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Jefferson Headache Clinic

  • By Katie M. Golden Moderator

    Has anyone been to the Jefferson Headache Clinic in Philadelphia? My neurologist is sending me there in 2 weeks for an initial consultation and is suggesting that I am hospitalized for at least a week to receive lidocaine infusions. She said that the treatment will likely cause hallucinations, which could be scary or really fun- haha!

    Any feedback on the process at the Clinic, what to bring, what to expect, etc would be appreciated!!

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  • By Nancy Harris Bonk Moderator

    Hi,

    I haven’t been to the Jefferson but have meet a few of the doctors who work there and they are absolutely wonderful. They are kind, caring and compassionate and are world class migraine specialists too boot!

    Let us know how your appointment goes, OK? Do you have everything read for it? All your questions and concerns mapped out? Let me share some information that may help you get ready for your appointment; https://migraine.com/blog/6-tips-for-optimal-results-at-your-doctors-appointment/ and https://migraine.com/getting-help/prepare-docto-visit/ and https://migraine.com/blog/doctor-patient-communication-set-up-your-own-migraine-summary-document/.

    Good luck!

    Nancy

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  • By wao618

    I would like to see a topic that asks if anyone has been inpatient at any clinic & what was their experience. I’m trying to determine if this is the next course of action for me and would love to read about others’ who have done inpatient. Thanks

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  • By Becky

    I went there and they had my doc put me in the hospital and come off all meds and start all over again with a clean system. However, that was 13 years ago, I am now getting Botox injections. Botox helps but it isn’t a cure. I did like Jefferson though. I guess they would have done more if my insurance covered it but my parents were paying out of their pockets.

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  • By Nancy Harris Bonk Moderator

    Hi Rebeccapa,

    Thank you for sharing your experience at the Jefferson with us.

    I’m glad to hear Botox is working for you. You are so right when you say “Botox helps but is isn’t a cure.” Botox is a migraine preventive medication that works wonders for some people. Having said that, we still need to be careful about our triggers and lifestyle as we manage migraine.

    Nancy

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  • By Ellen Schnakenberg

    Rebeccapa – There are some new thoughts on getting patients out of medication overuse headache, and many doctors now begin preventives before withdrawing medicines to help ease the transition. I’m not lucky enough to be one of the Jefferson’s patients, so I can’t comment how they deal with that now, but it is entirely possible that this has changed over the years 🙂

    ~Ellen

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  • By Becky

    Coming off all the meds helped for a while and Ellen yes I was taking preventives (still am) but I guess since my migraines are genetic they will never go away. I had a hystectomy at 40 (with no children) to prevent the menstrual related migraines. I do good but still have to go get a shot (at the PCP) every 4-6 weeks but not er. I have come to realize that I will have them forever.

    Thanks,
    Becky

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  • By Nancy Harris Bonk Moderator

    Hi Becky,

    It is true that migraine is a neurological genetic disease that currently has no cure. Have we discussed trigger identification and management? They must have covered this at the Jefferson, right?

    Nancy

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  • By Becky

    I will tell you the truth, I don’t remember, that was 13 years ago. But they really didn’t have to discuss that w/me because I have done soo much research that sometimes I tell my docs stuff!
    Becky

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  • By Ellen Schnakenberg

    Reveccapa – I guess the important question here really is, do you know your triggers? Have you revisited them again lately in case they have changed? Managing them is super important, and if you’re doing that, you’re on to something good. However, I encourage you to always be on the lookout for new and different ways of dealing with them. 🙂

    ~Ellen

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  • By Becky

    I know my triggers. Barometric pressure changes are hard, then I have to watch my diet. But the worse is when the Botox wears off. That is horrible.

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  • By Ellen Schnakenberg

    Rebeccapa – I’m right there with you. My Botox wore off before my last injections. My specialist informed me that there are a few patients for whom the Botox lasts 10 weeks instead of 12. That leaves us in a pickle, because not only are we without our medicine for two weeks, but in my case at least, I lost the cumulative effect I had gained by keeping up with them to begin with.

    This Friday is my next set of injections. I’ll be just a smidge over 10 weeks so am hoping that this will work in my favor. I guess we’ll soon see.

    In the meantime, I am going to talk to my specialist to see if there is any way we can get insurance to cover them at 10 week intervals instead of 12. I’m not holding my breath, but maybe if enough doctors and patients make a point of it, perhaps we can get them to at least pay some attention to our squeaky wheel 🙂

    ~Ellen

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  • By alib

    I am new to this site and I am currently being treated at Jefferson headache clinic. I just
    went through the out patient infusion of 3 consecutive days of DHE & torodol. The infusions did not work and they are recommending inpatient for me too. I did speak to someone going through the infusions with me and she described the hospitalization. She said they do use lidocaine drips along with other medications (each person is different)they also have group therapies and other support people there for you. They can also use higher doses of things
    like DHE because you are being monitored.

    I am still considering the possiblity, i have not tried botox yet so will probably do that first.

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  • By Katie M. Golden Moderator

    I’ve now gone through the Jefferson Headache Clinic in Philadelphia and would like to share my experience. I was there for 8 days in August. Each day my doctor visited me and discussed my treatment plan based on my current response to the medication. I had a PIC line inserted on Day 1 instead of just a regular IV, since I was on a continuous drip of medications. The nurses would only disconnect the IV once a day for a max of 15 minutes so that I could take a shower (everyone has a private room and full bath). The main medication they give is lidocaine. Each day they would increase the dose and monitor my response. After Day 4, I started to feel the effects. My headaches began to ease. The most common side-effect is hallucinations, which I experienced. Mostly it was in the form of shapes and colors, similar to an aura. After a while my vision became blurred and I had trouble speaking full sentences. Around Day 5 I witnessed objects and people who I knew really weren’t there. It wasn’t as scary as it may sound. I knew I was in a safe place and this was part of the process. The nurses continually checked on me and the lidocaine was adjusted down when the side effects became too much for me. On Day 7, my headaches had improved significantly and they made plans for my discharge the next day.
    While I was there, I participated in 2 classes (Yoga and Coping Strategies) in which I was able to meet other migraineurs like me. I had never previously talked to anyone who suffered on the same level I did. Their stories were varied. One man was headache free within 3 days of being admitted and was about to be released. Another woman had been to the clinic 6 or 7 times and returned as frequently as every 3 months in order to maintain her headaches. I hope to be somewhere in between the two.
    Another big part of the Clinic is meeting with a psychologist. I took a personality test and had a one-hour session. The main objective is to determine if there are other factors contributing to the headaches to make sure they are treating the whole person and not just the symptoms. The psychologist would occasionally drop by to check on me to see how I was handling the treatments. While I don’t consider outside stressors to be a big part of my situation (and they agreed), I understand why they focus on this aspect. Depression and anxiety are co-morbid with lots of migraineurs.
    I’ve been home for 3 weeks now. The treatment was not a quick fix and I’ve had trouble adjusting to the medications I took home. It’s been a process and I know I have to be patient. My headaches are just as frequent, but they are not as severe. The abortives I take work more effectively than they did before, so I consider that a victory. I just returned for a check-up and we changed my treatment plan so I’m hoping things will improve shortly. My story, however, is not typical and doesn’t mean you wouldn’t respond more positively to the treatment than I did. Overall, the Clinic was a good experience, well-run, friendly, professional and competent.

    Feel free to ask me questions if you have them!

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  • By Nancy Harris Bonk Moderator

    Hi katie.golden.migraine,

    Thank you for sharing you experience with us. I am glad to hear it was positive.

    Transitions home can be difficult, but it sounds like you are handling it well.

    Keep us posted on how you are doing, OK?

    Nancy

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    • By Jules2dl

      Hi katie.golden.migraine,
      I know it has been a while since you posted this, but I’m hoping you still check back or get notified about any updates to this thread.
      I have an upcoming appointment at the Jefferson clinic, which I made after reading what you had to say about it in your pictorial essay (which was great, by the way).
      I was one of the first patients of the Diamond clinic when they opened back in the 70’s, and then did a 10 year stretch with them from 2002 to 2012, which included 3 stays in their inpatient unit. During my last 12 day stay, they failed to even break the headache, and I left feeling exactly the same as I did when I was admitted. Now I’m seeing a new neurologist who prescribed the very first drug that Dr Diamond started me on in 1975! I need some aggressive treatment; this every-old-drug-is-new-again-game just isn’t cutting it anymore. My chronic daily headaches have morphed into chronic daily migraines in the last 3 years, with a daily pain level of about 7, broken up by levels of 8 to 10 when the weather changes. Like you, I’m on disability, afraid to drive, and my mental capacity, or what’s left of it, is well, not so great any more.
      So I’m wondering about the little details such as…is there an inexpensive hotel near the clinic you could recommend? Do the patients wear pajamas or real clothes during their inpatient stay? Is it safe to bring my iPad and cell phone? Any other little thing you might suggest that I bring to make the stay more pleasant? A teddy bear?
      Thanks much!
      Julie

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    • By Katie M. Golden Moderator

      Julie,
      You can wear your own pajamas. You might want slippers to walk around in. You’re not going to feel like getting out of bed, but you should try to walk up and down the halls if you can.

      I brought my own blanket or quilt, the one they give you is pretty thin. There’s wifi, so bring your cell phone and iPad. There’s a TV in the room, but you have to pay like $8 a day to use it. And there’s a small fridge in the nurse’s station if you want to bring food. There are a ton of hotels in the area, but I stayed with a friend who lived in Philly, so I don’t have any recommendations.

      Try to go to the group classes. It’s a nice way to meet people who are going through the same thing.

      If you haven’t gone to the initial consultation, be prepared for at least a 4 hour day. On the first visit, you’ll meet with a psychologist. You fill out a 400 question personality test and then you meet with the doctor. It’s a long day, but they use everything to figure out the best treatment plan for you.

      Let me know if you have other questions!
      -Katie

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    • By Tonya

      Thank you for posting about the Headache camp. I have been looking into trying to go to a camp or clinic or some sort of inpatient treatment like this since my chronic migraines have been getting worse and worse. I spoke to my neurologist today and she didn’t seem to know much about the Jefferson Program. Was this something that your Doctor knew about and got you into, or was this something that you contacted Jefferson yourself about? I’ve looked online at Jefferson and can’t seem to find anything that links directly to an inpatient program. I don’t know if I’m just not looking in the right places or what. I live in Texas and my Dr. suggested Baylor, but I don’t know if they offer the Ketamine treatments or not. I still need to look into that, but it sounds like you had really good results with that. I’ve been struggling for over 7 years years now, with every medication they can throw at me and nothing works. I pretty much have a migraine every day at this point. I guess I would just like to know how to get the ball rolling so I can see if going to Jefferson would even be an option for me. Also, do they only do the clinics once a year or do they do them year round?
      Thanks so much! Your input is so helpful!

      Tonya

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    • By Katie M. Golden Moderator

      Tonya,
      Jefferson’s website doesn’t have much on either the lidocaine or ketamine infusions done in the hospital. My Headache Specialist in DC had done her residency at Jefferson, so once we had exhausted a lot of options, she suggested that I see the doctors there. Now, the neuros at both places, DC & Philly, collaborate on my care.

      I’m not sure what other large medical centers do ketamine infusions. I think it’s fairly cutting edge because there hasn’t been a ton of research conducted yet. Jefferson is going to publish a paper this summer about their patients who have tried it. It is definitely being used more often to treat depression patients.

      Jefferson takes patients year round. Sometimes they have a back log of patients and it can take a few months to get scheduled for the in-patient stay.

      I’ve never been to Baylor, but have heard good things. I don’t know exactly what they offer, but I’m sure they’ve heard about using ketamine. Other renowned headache centers that might be slightly easier to get to since you’re in Texas is the Diamond Headache Clinic in Chicago and the Michigan Headache and Neurologic Institute. Of course insurance will play into where you can go. But maybe try Baylor first and see what they can offer.

      Let me know if you have any other questions!
      -Katie

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  • By Jules2dl

    Thank you both so much for your information, you have been very helpful! I’ve got the place to stay problem solved in an amazing way that still blows my mind. My husband absolutely cannot take off work or he will lose his job; we cannot afford for that to happen. Though we were both concerned about me flying by myself (I always get severe migraines when I fly) and navigating around a strange city by myself, I was ready to do it. Then a friend of mine called me up and said it’s all settled, she’s going to drive me to Philly and we are going to stay at her friend’s house. I’ve never met her friend, but she’s willing to put me up, and she lives only 30 minutes from the clinic. If I do get admitted to the inpatient unit, I will most likely need a hotel 1 night after I am released and then fly home from there, as I don’t expect my friend will be able to stay indefinitely in order to drive me home. But it just touches me how willing these ladies are to go out of their way to help me out.
    I absolutely did not know that the clinic and the inpatient unit are not in the same building! That is very helpful information to have! I suppose it might be a good idea to have the name of an inexpensive hotel near the inpatient unit. The ones near the clinic were all wonderful hotels that I only wish I could afford! I’m more of a Comfort Inn or Quality Inn than a Hilton or Hyatt type. If you could help with that Jamie, I’d really appreciate it!
    And Katie, if I am blessed with some treatment that actually helps with this 44 year old monster in my head, I’m gonna owe you a whole lot more than thank you!! ;-P

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  • By Danielle

    Hi everyone!

    I am being admitted as an inpatient at Jefferson at the end of this month. Does anyone have any recommendations on what to bring? Thanks in advance!

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  • By Katie M. Golden Moderator

    Beggsy21,
    I’m very excited for you, I hope they are able to help you.
    You can wear your own pajamas. You may want to bring your own pillow and an extra blanket (the one they give you isn’t very warm). There is wi-fi, so you can bring a laptop or tablet. There is a small fridge there and you can put personal food in there. There’s also a TV, but you have to pay a small daily charge. You’ll have a shower so bring what you need.

    I encourage you to go to go the daily classes. And be patient with your daily results. You may feel improvement one day, but feel worse the next. They’ll be throwing a lot of meds and ideas at you and it will take your body some time to adjust.
    Take care and let us know how you’re doing!
    -Katie

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  • By Jules2dl

    Jamie
    I can’t thank you enough for all of the invaluable information you’ve sent!! This will help so much with the nerve-wracking, migraine-mounting details!!! God bless you!!!

    Katie, big hugs to you as well… I wouldn’t be going if it wasn’t for you!!! God bless you as well!!

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  • By Jules2dl

    Jamie, you’re a doll! Thanks so much!
    I can’t believe it’s almost time to leave! My friend and I start our drive to Philly on Monday the sixth, and my outpatient appointment is on Thursday the ninth, just a week from tomorrow!
    Of course I’m stressing myself out trying to get the house clean before I leave and making arrangements for my 2 Cockatoos and my Bichon Poo to be taken care of while I’m away.
    Last week was the best week I’ve had all year migraine wise, as there was no rain and no drastic changes in temperature.
    This week is quite a different story however, and a #9 migraine woke me up at 1:00 A.M. My husband and I are using his time when the animals and I will all be out of the house for a time to bomb the house and hopefully rid ourselves of the flour moth infestation that has been driving us bonkers. So I’ve got to empty, bleach, and spray all of the cabinets and drawers in the kitchen this week, and pitch all of the infested food. Fun doing that with a migraine.
    I can’t wait to get on the road because I’m really stressing out about all of this stuff!
    I’ll be sure to keep you informed as much as I can, at least until I start seeing little green men or large pink elephants. At any rate, you’ll get the news at the latest when I get home!
    Hugs to both of you!julie

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  • By Melly62

    I have contacted Jefferson and am waiting for a phone call back.
    Although I hear that now that I am on Lamictal and Topamax combo no one will want to treat me.
    After 75 days of Status Migraine I will try anything.
    Thanks for all the details Katie!

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  • By Jules2dl

    I just got back home today after my treatment at Jefferson Clinic. I am happy to report that the continuous migraine which started on 12/31/2011 has finally bitten the dust! What a blessing!!
    My friend and I left for Philadelphia on Monday, 10/06/2014. We arrived at her friend’s house the following day.
    Wednesday I got to see a bit of Philly and take a trial run to the outpatient clinic. My outpatient appointment was Thursday morning. At 1st I was told by a nurse that inpatient admissions (which is what I was hoping for), were running about 3 weeks out. I was totally dismayed at the thought that I might have to drive back to Chicago and return to Philly in a few weeks. It had been very difficult financially, as well as syncing all of our schedules for the trip, and arranging to board my 2 Cockatoos and have a friend care for my dog while I was away, and it just was not very likely that a return visit so soon would be able to happen. However, I lucked out and was able to get in as an emergency patient the following day.
    I have to say that the protocol I was on for the 8 days I spent as an inpatient was entirely different than anything I’ve experienced in my 3 hospitalizations at the Diamond Inpatient Clinic in Chicago. It was the most unpleasant hospital stay I’ve ever had, but by far the most beneficial. Diamond had me for 12 days in 02 and 03/2012, when my never-ending headache was in it’s infancy, and their 3 day DHE protocol (done 3 times consecutively) was unable to break the headache cycle. The staff of the Jefferson unit were unfailingly pleasant and kind, and did everything they could to make me comfortable. The 1 thing I just couldn’t stand was the bed alarm. This would go off if an arm or leg strayed over the side of the bed, and the annoying tone would keep increasing until it was turned off by a nurse. Between that and the infusion pump beeping all the time it could get maddening as well as painful. When the meds kicked in and the hallucinations started, I was ready for them thanks to Katie. What I wasn’t prepared for was how paranoid I became. As Katie said, it was pretty dark at times.
    Aside from the infusions, I was given the most thorough nerve block I’ve ever had, targeting not only the occipital area, but up along my head, temples, and forehead. I finally had my long-time concerns about Botox addressed intelligently, instead of just taken at face value as a refusal. The resulting conversation has me seriously considering Botox as my next reasonable step to take. It makes so much of a difference when a Doctor cares enough to spend a few extra minutes listening to and addressing a patient’s concerns.
    I have been migraine free since Thursday or Friday, even though it has rained consistently every day since then. This is a major milestone for me, as weather is my worst trigger.
    I am having a lot of trouble adjusting to the new preventive med I’ve been put on. Major jitters, like a constant anxiety attack, can’t sleep though exhausted, loss of appetite, and blurred vision. I’m waiting for the headache center to open so I can call them about this. I’m hoping that I’ll do well on it after a few tweaks. Being on new meds is a source of hope after so many years of “let’s try this again”.
    A comparison between Jefferson and Diamond Clinics left me feeling that Jeff had a lot more options as far as meds go. I’d been trying for years to get my preventative meds changed at Diamond, and was always directed back to the same handful of meds that I’d tried in the past with no success. I knew there were so many alternatives that I’d never tried, including whole classes of meds I’d never been on; it was frustrating.
    The whole experience at Jefferson, while something I would not want to repeat any time soon, was without a doubt the most rewarding in terms of results that I have ever had in my 44 years of migraines and migraine treatments. I can only say that if you are looking for treatment options for yourself or a loved one, go to Jefferson first.
    Thank you and God bless you to Katie, Jamie, and Nancy for helping me to prepare for my visit!

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    • By Katie M. Golden Moderator

      Jules2dl,
      I’m SO happy for you!!! I’m glad you felt comfortable at Jefferson and you felt like they listened to you.

      I have a few things to tell you now that you are home. Now that you feel better, you’ll want to catch up on everything you’ve been missing out on for so long. But take it easy to have the best chance of long term effects of these treatments.

      -A trigger is still a trigger. If eating one piece of chocolate would give you a Migraine before, you may be able to tolerate 5 pieces before a Migraine strikes, but a Migraine can still happen is my point. So stay away from the things that your head didn’t agree with.

      – I had similar issues when I came home from the new meds. Shaky, anxious, skin crawling and can’t sleep. For me this was due to the Mexilitene. If you are on that, ask your doc about taking a smaller dose or changing meds. It helped me a lot.

      -Now that you feel better, you’ll want to catch up on everything you’ve been missing out on for so long. But take it easy to have the best chance of long term effects of these treatments.

      -Do NOT panic if you feel the old Migraine starting to sneak up on you again. It doesn’t mean that the treatment didn’t work. Ride it out, use the tools and meds gave you when you were discharged and think of it as a chance to manage your Migraines better than ever before.

      -They say some people only need one treatment, others go once or twice a year. So if you find that things are reverting back to the way they were before this stay, maybe another treatment will help. I’ve been back once. I know you wouldn’t want to do it anytime soon, but it’s always an option.

      I’m definitely not trying to scare you. I hope you will continue to feel as great as you are today!! I just wish someone had told me all of this when I went home. It can be hard to adjust to the meds. Continue to take care of yourself and I can’t stress enough about how you still need to rest until you feel balanced on your meds. Don’t go out surfing or climb a mountain- although you probably feel like you could right now!

      I am so ecstatic for you. Keep giving us updates as things progress!
      -Katie

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  • By Jules2dl

    Hi Katie:
    Thank you for the heads up about coming home and not over-doing it. I can honestly say that it won’t be an issue; I’m exhausted. I’ve experienced this before after coming home from hospitalizations at Diamond, but never quite this bad.
    They run a lot of powerful meds through your system for several days, and you’re bound to get after-effects from that. I totally understand that. I’ve spoken to some nurses at Jefferson yesterday and today, and they told me that part of the jitteriness is coming down from the hospital meds. I cut down on my doses of Mexilitine over the weekend on my own, and started taking Benadryl with it, which is exactly what they would have advised me to do. They didn’t send me home with any Ativan, but last night I took a clonazepam and actually slept for 2 hours.
    Today they told me to stop the Mexilitine until I feel better and then try it again. Too bad I’d already taken my dose this morning! They also told me to follow up with my neurologist here, which may be tricky because I didn’t let him know I was going to Jefferson.
    I’m actually not panicking about if/when/how the migraines return. I think that realistically they will return at some point, but that hopefully their pattern will have morphed out of the continuous one they’ve been on for almost 3 years. As it is, it rained on our drive home from Philly, it has been raining on and off at home, and I’m incredibly still headache free. I am now planning on trying Botox when they do return. I feel hopeful about having new meds for both preventatives and abortives; I’m just nervous about adjusting to the Mexilitine. I have an entirely new plan and an entirely new hope for the future. If the continuous migraine comes back, I know they can break it at Jefferson, and much of my depression was fear that I’d have to go through the rest of my life with a migraine every single day.
    No worries, I’m not surfing or mountain climbing, but I am working on a mosaic to send to my new friend who opened her home to me so that I could save on hotels. I also promised the friend that drove me to Philly and back that I’d mosaic a gargoyle for her. Its good to have projects in the works, aside from the ones I donate to a local food bank.
    I hope you are doing well with your own migraines, and I’m keeping you in my prayers.
    Shalom ~
    Julie

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  • By Katie M. Golden Moderator

    Jules2dl,
    You have exactly the right attitude, which is going to help your recovery tremendously. With any new treatment, I tell people I am cautiously optimistic. You never know what’s going to help!

    I love that you have some craft projects to work on. It helps to have something to look forward to!
    If anything changes either way, let us know!
    Best wishes!-Katie

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  • By Jules2dl

    Okay, it’s baaacckkkkk……
    Right where it left off, on my left side, #7.
    I’ll admit to being a bit disappointed that it has reappeared so soon, but I am not devastated, as I have been at other times when I foolishly allowed myself to hope for a cure.
    There is no cure, except through Christ, and apparently He still has some lessons for me to learn from this migraine pathway that I’ve been on most of my life.
    Okay, I’m willing to learn some stuff. I’m willing to learn to pray for better management rather than a cure. I’m willing to learn how I can help others through my own experience. I’m willing to learn how not to let the migraines control my life and my thoughts. I’m willing to learn how to live a happy, fulfilled life which includes chronic migraines. I’m willing for this path to be the path I’m on for life, with the promise of no pain and no sorrow in the Kingdom of Heaven.
    Do I cast doubt upon the wisdom of having gone to Jefferson, or of their efficacy? Absolutely not. They accomplished the goals I had set for my stay there: They broke the never-ending 3 year old migraine; they got me off of the meds I was on that weren’t helping and got me on to new meds that I’ve never been on before. The combination of those 2 things alone has brought me to a new level of understanding as well as a new level of hope.
    And hope, my dear migraineur friends, is everything.

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    • By Katie M. Golden Moderator

      Jules2dl,
      I’m so sorry to hear the Migraines have returned. Again I am so amazed at your attitude about it. Even if you need to say it just to believe it- fake it til you make it!

      I’m sure you will have moments of blaming yourself. Maybe if I hadn’t gone to the grocery store or if I had gotten one more hour of sleep then I would have felt better for longer. Don’t beat yourself up. I did when mine came back about a week after being discharged. It’s so much for your body to process and it’s easy for your body to revert back to how it’s used to functioning.

      In the past few days, have you noticed a change in the headaches? Has the intensity or frequency changed? Do you find the new meds giving you relief?

      Wishing you the best!
      -Katie

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  • By Jules2dl

    Hi Katie;
    I have another migraine, which started yesterday morning. It has been raining here so I’m sure that’s why. As so far I do not harbor any grandiose illusions (or delusions!) about being able to control the weather, I find it difficult to shoulder any blame and/or guilt about this headache!
    I have noticed many differences since I’ve been back home from Jefferson. On the positive side, the chronic daily migraine which rated typically from 7 to 10 has reverted back to the chronic daily background headache which I always used to get.
    The daily dizziness and vertigo I had such a problem with are much, much better; the “optical migraines” are gone too. I’m more clear-headed as far as thinking processes go, which is a relief. I think getting off of the Topamax was a good decision. Now that the daily bad guy has been put down, it feels good to be moving again, out with my dog or just doing laundry. I need to get in shape as I’m so debilitated from that 3 year stretch of chronic moderate to severe pain.
    On the negative side, I’m not sleeping more than 2-3 hours/night, which is exhausting. I also can’t concentrate on much of anything. Normally I’ll start a mosaic or painting and just get lost in it for hours at a time. This past week I can’t seem to take an interest in anything. I’ve started several projects and just can’t find the direction I want to take with them or work for more than a few minutes at a time. I’m extremely restless, and it is very frustrating for me.
    I just started taking the mexilitine 3x/day yesterday, so we’ll see how that goes as a preventative once it builds up in my system. The frequency, duration, and intensity of the headaches have all seemed to change for the better, so I can hardly complain (no one listens anyway, except for my dog). I haven’t had a severe enough headache to try out the Haldol they gave me as an abortive. Maxalt worked on 1 headache but not another, so it continues to be inconsistent. Im going to follow up with my neurologist here soon.
    Hoping that the Autumn weather changes don’t hit you too hard and that all is well.
    julie

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  • By Katie M. Golden Moderator

    Jules,
    I had the exact same problem and it was maddening! I tend to deal with my pain by sleeping, so when I came back and was sleeping 2-4 hours a night I was a mess. Even though I was awake I felt like I never got anything accomplished. Just moved from one task to another without finishing anything.

    For me, the reason was the Mexilitine. Call Jefferson and let them know about the insomnia. They may take you down on the dose, give you a new drug or tell you to stop taking it. I eventually weaned off of it, but everyone is different.

    -Katie

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  • By Alicia

    Hello everyone.

    I just got back from my Jefferson 4-hour consultation, and I’m going for inpatient in a couple weeks. Problem is, I live 4-5 hours away, so this whole “we’ll call you the day before to let you know what time to show up” thing is kind of a problem. I’ll likely have to leave the day before (bus) and spend the night in a hotel; not cheap within the city, even for just me: ~$130+, for those wondering what to expect price-wise, but be prepared for something closer to ~$200. If it’s scheduled in the afternoon, I won’t have to.

    That said, to those who been inpatient in the past, was your check-in time first thing, or sometime in the afternoon? And did they really leave it until the day before? The person I spoke to at checkout from the clinic today said I might get the call that Monday (with the appointment on Wednesday).

    And now, to try to add something of use:
    Don’t worry too much about food availability at the Neuroscience Hospital (where the 4-5 hour first appointment is). There’s a little cafe-type area with at least sandwiches and drinks right inside the door, and there’s a bunch of food carts (standard hot dog/cheesesteak/chicken sandwich, fruit, sometimes gyros) within a block (I think there was even one right outside). From past experience living in the city, those carts tend to disappear by 3:00 or 4:00 at the latest. That said, take a PB&J or something small (granola bar, etc.) with you, because you do need to stay put in that waiting room just in case they want to come find you. It felt like it went pretty quickly (not a lot of waiting around, but you’re not rushing by any means).

    If you drive, the garage was easy to get into (just read the directions so you’re sure which street to be on; generally the named streets alternate which direction they’re one-way, and some numbered streets are one-way), but the turns are tight (and we were in a pretty small car). The directions say to pay before you go back in the garage, but since you’re going to the hospital, make sure you get it validated on your way out at the desk rather than the machine (it’s a significant discount; I think ours went from $24 down to $11).

    If you choose to stay in Old City (see: Best Western Independence Park Hotel; tea and cookies from 4-6, and has a decent buffet breakfast; parking is definitely NOT onsite like advertised though), expect everything to close by 6:00pm. The Bourse has a food court if you want familiar/definitely safe options (just search for it).

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  • By Katie M. Golden Moderator

    Shiroducki
    I believe that both of my inpatient stays were scheduled for mid-morning. It took a little longer than expected for my insurance company to approve the stay. Once that was taken care of, they had to find a bed for me. I knew at least more than 3 days in advance for both visits.

    I hope that your insurance company works faster than mine and you get in soon. Coordinating the stay can get stressful, but there are a lot of moving pieces to put in place.

    Bring things with you that make you feel comfortable. Your own blanket, laptop, pictures…whatever makes you happy. And the food service is pretty great. You can also order delivery from outside. And there’s a fridge at the nurse’s station that they allow you to use.

    Please let us know how it goes!!
    -Katie
    Migraine.com Moderator
    -Katie

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  • By Julia

    This thread has been very useful!

    I am here on behalf of my adult son who is severely disabled by his post-traumatic headaches/chronic migraines and cannot read or use a computer. I am managing everything for him right now.

    We went to Jefferson on Monday for his initial consult with Dr. Young. Although the doctor advised inpatient stay ASAP, the scheduler gave us the date of Dec 8, 5 weeks away! I just called to see if they keep a cancellation list and they don’t.

    I know my son will be anxious anticipating the hospital so I want to go ASAP. Also he has had a constant headache for over 13 months with extreme sound sensitivity and exertion sensitivity and I am hopeful this can help him get back to a normal life.

    Thanks for all this information, which I am passing on to him a little at a time.

    Julia

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  • By Jules2dl

    Julia32 ~
    Did you ask if they could get your son admitted as an
    emergency? That’s what they did for me, though they
    said I was lucky there was a bed available.
    They did break my long term migraine (I’d had it daily for almost 3 years). The headaches came back, but not every day, and with definite improvement.
    Sending prayers for your son ~
    Julie

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  • By Julia

    Thanks for your response, Julie. And for the prayers!

    It was Dr. Young who mentioned he could not ask for an emergency same-day admission for my son because his condition has been unchanged for 5 months now so it did not qualify as an emergency. He gave me the impression they would give me a date in maybe 2-3 weeks, so I was surprised to get a date 5 weeks in the future. I left a message with their scheduler Miriam this morning to see if there is anything she can do to make it sooner.

    I also forgot to ask if any hotels give a special rate for families of people in the hospital. Does anyone have a tip on tis? My brother has a house in Brigantine, but that is probably more than an hour’s drive away. Relatives in Monmouth County NJ too – again, pretty far.

    Julia

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    • By Katie M. Golden Moderator

      Julia32,
      I’ve run into similar problems getting a date for an inpatient stay. The doc says one thing, but the scheduler is the one who really knows what’s going on. It all really depends on if they have doctors who are doing a rotation in the hospital. They all take turns. Miriam can be your best resource (plus she’s super nice).

      And to be honest it could take a little while for your insurance to approve this stay. I hope they do it without any problems, but it seems like they make you jump through some hoops.

      -Katie
      Migraine.com Moderator

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  • By Julia

    The good thing about going in December is that the hotels have great availability and are giving good discounts that month – slow month for business and vacation travel.

    Joe is in terrible shape headache-wise after Monday’s visit to Jefferson. He has not had that much stimulation in one day since our cross country plane trip to move him in with me. That was June 1. He is sad that his one hope for making him better has made him so much worse and he is fearful that the hospital stay will be even worse. I haven’t even told him what someone said about the bed alarming if your arm or leg goes off the edge and the IV drip alarming. He is extremely sound sensitive and both of those things will make his headache much worse. So he is going there to help with his headaches and then they have alarms in the room that make people with sound sensitivities worse? I don’t get it.

    Julia

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  • By Alicia

    Ok, I actually got the call today for my arrival time (11:30) on Wednesday next week. The message said they’ll call again on Monday with more details.

    Jefferson’s phone system is absolutely maddening though. I wanted to ask a few specific questions about inpatient, but the initial phone menu is no help, and then I finally get to a person (operator, really), and he/she sends me off to a machine to leave a message. I managed to finally get answers by just calling Methodist and asking for the inpatient unit, where a lovely nurse was able to answer all the questions I had. (No complaints on that end so far!)

    But then again, I got to play phone tag all week with the nurses (started Monday, finally got an answer Friday afternoon). Dr. Young gave me a prescription to try, and I had a pretty scary reaction to it (as I tend to do lately), so I wanted to tell them about it, and find out if I should stop or not. I know it’s a busy place, but to not even have an option for the nurse line? I had to ask the operator each time. I’m afraid this won’t bode well for future long-distance office interactions, but I’m at least committed to this inpatient stay.

    Now to just figure out what I’m taking…

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  • By Barb

    Hi, Shiroduckie! I’m starting my inpatient stay this Wednesday (the 12th). Are you the same day, or a week later? Maybe we’ll meet there.

    For those who have done the inpatient stay, what is the food like?

    And are we able to adjust the temperature in the rooms? (I get overheated easily, so I’m bringing a small fan just in case.)

    Are the classes at a set time each day? How long do they last?

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    • By Danielle

      Hi BarbD!

      I’m so happy for you! Inpatient treatment has changed my life for the better!

      Surprisingly, I enjoyed the food. However, I did play it safe. French toast and bacon every morning, grilled cheese or chicken salad for lunch, and dinner varied by day.

      As far as the room temps I was comfortable being that I am always cold – I did bring a blanket and pillow from home though to make me more comfortable.

      Class times vary by day and last as long as you’re able to stay. I had a very difficult time staying the entire length of the classes due to the meds and my bodies reaction to them.

      Best of luck,
      Elle

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    • By Alicia

      Barb-

      Yes, it’s this Wednesday. I’m slowly gathering all the things I think I want to take, but my house is a mess right now. So many choices, and my brain tends to just shut down rather than make a decision (thanks, anxiety!).

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  • By Jules2dl

    Julia~
    I’m sorry if my earlier post (about the alarms going off) frightened you. Will you be staying with your son during the daytime hours? If you are, ask a nurse to show you how to deactivate the bed alarm if it goes off. They can also tell you how you can turn off the infusion alarm; sometimes its just a matter of adjusting the position of your arm, but they will also tell you when you need to call a nurse to reset the infusion alarm (for example, if the infusion has ended). Your presence will also help him to deal with any hallucinations he may have from the lidocaine, as these can be disconcerting.
    Remember also that your son will be on heavy-duty meds, so his reactions to sounds may be blunted. The doctors work very hard to get patient pain levels down to zero, and they have lots of tricks up their sleeves. Having experienced the kindness and dedication of everyone who works at the clinic, and their formidable wealth of knowledge, I can honestly tell you that they are better equipped to be able to break your son’s pain cycle than just about anyone. Have faith!!

    Barb ~
    The food is good for hospital food, but honestly I ordered fresh fruit plates with yogurt or cottage cheese and a muffin at least once a day. Oatmeal is a safe bet for breakfast. You can also probably get a burger or deli sandwich if you don’t like the menu choices; ask foodservice for a list of the alternatives which are available.
    I don’t remember if there’s a thermostat in the room, but I was able to crack open a window one night when I got overheated. Mostly I was cold, and glad I brought my throw from home. It was nice to have something familiar and soft from home too! It may be quite helpful to bring an extension cord for your fan (also for phone chargers) so that you can reach them yourself from bed.
    There should be an info sheet on your bulletin board about the class subjects and times.
    There should be a memo on the bulletin board in your room with the info on the classes, or ask a nurse.

    Shiroduckie ~
    I was frustrated by the phone system as well at first, and did the same thing you did. Subsequently I have learned that if you leave a message on the outpatient clinic’s patient help line you will definitely get a call back from one of the nurses. I always got my call back early the next morning, so be prepared to to wait till then to get an answer to your questions.

    Best wishes and prayers for all of you for your upcoming stay at Jefferson!

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    • By Alicia

      Jules-

      I will do that in the future. I tend to be up in the afternoon, and I think the patient line was only available something like 8-12 when I was calling around 3:00.

      Also, that fruit sounds really good. I didn’t think to ask before (never been admitted to a hospital before, so my only experience is with ER rooms), but were outlets easily available (single, I’m guessing), and were they usually pretty far away (since you suggested the extension cord)?

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    • By Julia

      Julie, Thank you so much for your encouraging and nerve-settling reply! I would like to be with my son as much as possible, especially the first day or two as he is adjusting to everything there. I think online I saw that visiting hours are 11-8 and in the brochure they gave me it says 12-8. And they wanted family members to abide by those hours, so I told Joe I could only help him during visiting hours. He is currently using a wheel chair even for short distances like getting to the bathroom and I have to wheel him, so he was concerned about how he would do that if I was not there. I told him there would be a button where he could call for help for things like that.

      Being able to turn off those alarms will be necessary, as even with noise cancelling headphones on, that noise would be torture for him. And he does try not to wear the earphones ALL the time, since he was told by an audiologist that doing that will make the sound sensitivity worse.

      I was also encouraged by your information about the food, since that was the next thing I was worrying about. Joe has been gluten-free, dairy-free, and egg-free for months, and eating any of these things now gives him nausea. At our consultation at Jefferson last Monday, my sister was kind enough to be with us all day and got him a sandwich for lunch. He ate it because he was hungry and did not think it would bother him, but just in time for the nurse and doctor appts., he got nausea. So now we know he should avoid gluten and probably dairy and eggs as well. So I was glad to hear he can get oatmeal and fruit for breakfast, and maybe the other two meals will be dairy and gluten free too like he has at home – mainly meat or fish and vegetables. I suppose it is OK for him to bring a stash of snacks like nuts, dried fruit, and seaweed?

      Good luck to shiroduckie and Barb on your hospital stays this week. I will be waiting for your reports on how it went.

      And thanks again Julie for all your detailed info. It really helps us plan and eases a mother’s worried mind.

      Julia

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  • By Julia

    The other thing I was wondering was if the group therapy sessions were mandatory. Joe is interested in one-on-one very short sessions with the psychologist, but he would not have the tolerance for group therapy of any length. He is very sensitive to stimulation, and can only converse, interact, listen or speak for short periods – like a couple of minutes at a time right now.

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  • By Jules2dl

    Julia ~
    I know that a gluten free diet is readily available at Jefferson. I’d contact the foodservice director before your son is admitted to arrange for egg and dairy free. They are so accommodating I feel sure that Joe will be able to stick to his preferred diet. It’s perfectly okay for him to bring a stash of snacks; there is even a refrigerator on the floor which is available for patient use. He will have to ring the nurse for help to the bathroom, they don’t want anybody getting up without assistance (Call, don’t fall is the motto they live by!), luckily, response time is pretty quick!
    When you leave for the evening, just be sure the call button is looped securely around the bed rail where he can easily reach it, and that he knows exactly where it is. That will reduce a lot of frustration.

    Shiroduckie ~
    Outlets were on the wall behind the bed, so I was super glad I brought the extension cord. I found it helpful to pull the chair up next to the bed and keep my cell phone and iPad resting on that while recharging. That way I could reach them easily without setting off the bed alarm. I think the extension cord I brought was 3 feet long, and that was satisfactory.

    I hope everyone will keep in touch and let us know how your stay was!!

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  • By Katie M. Golden Moderator

    Julia32,
    The docs strongly encourage going to the classes, however also understand that a patient may not make it if they can’t tolerate it. For me, at the classes was the first time I had ever met a chronic migraine patient in person, so it was nice to make a connection. But take it as it comes and don’t force him to push it.

    And the psychologist will visit multiple times during his visit, especially in the beginning to make sure he is adjusting to the hallucinations.

    There were 2 things that the psychologist told me during my visit that was extremely helpful. 1. A trigger is still a trigger. When you leave the hospital, no matter how good you feel, stay away from the same things that made your Migraines bad.

    The second thing was that things improved one day for me and I got so excited. Then later in the day, it was worse than before I got there. I was devastated. The psychologist told me she had seen that happen before. It’s normal. The body needs time to work through these meds. It’s not a linear process for getting better. There will be ups and downs in the hospital and the down time is how the docs know to adjust meds and try something else. Patience is key, but can be frustrating.

    -Katie

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  • By Julia

    Thanks, Katie. His triggers are any kind of stimulation or activity. His goal is to build up his tolerance for those things so he an get out of the damn wheel chair and live in the world again, but he knows he has to take it slowly when he feels able to do those things again. This week he is so bad after his appointment last Monday with Dr. Young (way too much talking) that he has been using Naproxen, which he rarely does. He knows that will mask his pain and he has to avoid stimulation while on it.

    Julia

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  • By Julia

    About the alarms that go off when an arm or a leg goes off the side of the bed, is that to alert the nurse that someone is trying to get up without assistance? Couldn’t they accomplish the same thing by using bed rails? I told my son about this alarm and he is concerned.

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  • By Jules2dl

    Julia ~
    You are correct about the purpose of the bed alarm. Putting the bed rails up does not serve to alert the nurse, but it will effectively aid in keeping Joe’s arms and legs from straying over the side of the bed.
    Please, please try to convince Joe not to worry excessively about his stay at Jefferson! I know that this is difficult, but the important thing to keep in mind is that he will be in the care of brilliant and compassionate doctors and nurses whose number 1 priority is to get his pain level down to zero. When he is getting the infusions and any other type of treatment they give him he may not respond to stimuli or triggers the way he does now. His mindset going in should be hopeful. Perhaps deep breathing or progressive relaxation techniques can help to keep his stress level down. Concentrate on the fact that he is going to be getting world class, cutting edge treatment in a facility designed and run with consideration for the patients. No sense in getting all worked up for 5 weeks.

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  • By Alicia

    I was discharged on Monday, so I’ve been home for a few days now. Still exhausted, but I can say the migraine hasn’t actually come back yet. I can identify pain in my head, but it has an obvious cause (eyestrain, bright light, sleepy). Really not happy with the functionality of my right arm thanks to the PICC line (has anyone else had pain and decreased motion after having one of those? starting to worry, and they didn’t warn me about it at all).

    Overall, I’d say that in my case, I shouldn’t have gone in the first place. I have a kind of anxiety about control (knowing what’s going to happen when, being able to deal with an issue on my own if it comes up), and inpatient in the hospital is the OPPOSITE of control (see: constantly attached to the infusion pump that needs to be plugged in almost all the time, plus the heart monitor). I also had issues, for example, when someone said the doctor would be around at 9-9:30, but I hadn’t seen anyone by 11:00 (day of discharge). Like I said, this is in my own personal case; I was also ~5 hours from home, with no visitors and no clear way of knowing how I’d be getting home until the morning of my escape.

    I experienced horrific hallucinations, but that was obviously caused by mixing the lidocaine with a muscle relaxer. Without that, I just had increasingly blurry vision (my eyes actually still aren’t back to normal yet, even without trying the home pill version of it) to where I couldn’t read. (note: don’t plan on reading as your main time-waster, because it is progressive and should end as soon as you stop the lidocaine.)

    Food was pretty good; be aware that while portions may seem small, as my nurse (Kelly, she’s great) explained, you can always ask for double portions, extra fruit, or a sandwich if nothing sounds good that day. For breakfast, you can ask for eggs AND pancakes AND cereal (packaged, so you could save Cheerios for a snack later) AND a banana if you really wanted to, and for multiple drinks as well. I got to a point where I barely ate (first due to nausea, then too sleepy, then just not hungry), so this was only really an issue in the beginning for me.

    I didn’t need blankets at all, because my room temperature was Screwed Up. They had to keep calling down to maintenance to have them cool it off (no in-room or on-floor adjustment at all). A poncho-type shawl might be useful (over the head and done, not fussy like the scarf kind), thanks to the likelihood of placing a PICC line right above your elbow.

    Miscellaneous thoughts:
    -Classes weren’t useful to me, to be honest, but you’re still expected to go.
    -I hope they get a new/different yoga teacher. I have some flexibility/joint pain issues, and was told I wasn’t “trying hard enough.” Same with attempting moves my body just isn’t built to accomplish.
    -If you have a tape/adhesive allergy, they seem to be well aware of options/alternatives, which was great.
    -I had no issue with the bed alarm, but I was super-aware of its presence (bright green light on the end of the bed). Best choice: don’t wait until you REALLY have to use the bathroom before you call the nurse. I had a couple good nurses at night, but the rest were borderline negligent (20 minutes+ to answer a bell at one point, with NO ONE in the hall to flag down for help; this was for a very irritating, loud, “infusion finished” alarm that no one could have missed going off).

    If there’s something I forgot, I’ll try to add it if someone asks. I’m probably nitpicking a million things, but I’ve never been admitted to a hospital before, so I don’t know how much of my concerns are extreme or just standard procedure. I’m not trying to scare anyone off, but I personally won’t be doing it again.

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  • By Katie M. Golden Moderator

    Shiroduckie,
    I’m glad you’re home, but sorry that you didn’t have a pleasant experience. If you’ve never been in the hospital before this, I can imagine how hard it was to cope and get used to. This is an intense experience! It’s also hard to go through by yourself. Despite having offers from people to come stay with me, I wanted to do it on my own and I regretted it. The second time I went in, I had more people around, but that’s not always a luxury.

    While the hospital stay wasn’t the best, how are you feeling?? Do you notice a difference in the frequency or severity of your headaches? Are you following the take-home meds and protocol they gave you? Sometimes that can be an adjustment as well. It will probably take you a little while to get your bearings as your body adjusts to the new meds. And did you feel that the doctors listened to you and were helpful?

    I wish you the best recovery!!
    -Katie

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  • By littleb15

    I can’t thank everyone enough for sharing their experiences and great advice. I have a consultation to go to Jefferson in February. I was wondering if anyone would be willing to share how much their out of pocket expenses were after insurance. I understand all insurances are different but I’m looking for a “ball park” figure. Just trying to prepare.

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  • By Julia

    My son Joe’s consultation was Nov.3. Because the Clinic is a preferred provider for his insurance, he paid the usual $15.00 co-pay for the nurse/doctor visit. For the psychologist piece, they do not bill insurance and you are required to pay the full fee up front and then seek reimbursement from insurance. The psychologist charge is $300. The MMPI, which is required in most circumstances, is another $180. So you have two charges to your credit card – one for the psychologist fees and one for your co-pay. Joe’s insurance is still processing the psychologist part of the claim – I am not sure what they will reimburse us.

    Julia

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  • By Alicia

    Katie,

    My headache had actually been pretty good, until what happened tonight. I haven’t started the mexilitene yet, partially because I had the blurry vision on the lidocaine, and my vision hasn’t totally fixed itself yet (more on that in a moment), so I have concerns about whether I’d be able to drive with that medicine.

    Disclaimer: To those who have not gone yet, know that the following story is probably uncommon.
    I ended up going to see my primary doctor today, because my arm hasn’t been behaving since I was released (few tingly/numb fingers, limited range of motion without pain, and no comfortable position to rest my arm). I was sent for an arm ultrasound and shoulder x-ray. I went immediately after, and found out I have a clot in my arm (above where the PICC line was, I believe). I’ll be on Coumadin for about a month, plus some kind of shot 2x day for a week.
    I give the disclaimer because thanks to the Heparin shots and flushes, this SHOULD NOT HAPPEN TO YOU. I tell the story anyway, because I do think you need to know that if you’re having pain there and generally not feeling well (I was still having blurry vision, sleepy, and sort of woozy) to get it checked out. It scared the absolute crap out of me tonight, but I’m glad I did something about it sooner rather than later. Apparently, the general unwellness was my body knowing something wasn’t right, but not being able to figure it out.
    ***I want to credit the migraines for making me more aware of when my body’s just tired or actually crapping out on me. Before, I might have just ignored it. So, thank you, chronic migraine.

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  • By Katie M. Golden Moderator

    Shiroduckie,
    I am so glad you got that checked out! You’re right having a blood clot after a PICC line is not very common. Glad you followed your gut!
    -Katie

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  • By Julia

    As my son’s date for inpatient treatment draws closer, he is having doubts about the wisdom of doing it. The problem is that any mental or physical activity makes his post-concussive condition worse. In the past, he increased activity while getting relief from his headache with prednisone. He is afraid this will happen again with the DHE, the main medication he is getting inpatient. Since the DHE, like the prednisone, will take away his warning sign (when the headache increases, he stops activity) he will not know how much activity is too much. So he thinks the only safe thing to do is no activity at all. And then he and I are both wondering if stopping all activity is a good thing at all.

    I don’t know if I explained this well. It is hard to explain. I think you have to have experienced post concussive syndrome to understand and his triggers are extreme even for a person with PCS.

    If anyone has any thoughts, please share.

    He is trying to get a call back from the doctor about this to help him make his decision, but the call-back last week was from a nurse, and he really needs to speak to the doctor about this.

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  • By Barb

    Working backward through the comments:

    Julia32: “The problem is that any mental or physical activity makes his post-concussive condition worse.”

    In my experience at Jefferson the only activity is dragging the dang IV pole to the bathroom and back. And to classes and back if you’re so inclined. The classes themselves consist of sitting around a table talking, except for the yoga class which is involved VERY light chair yoga. I chose to walk the halls a few times, but just because I was going stir-crazy in bed.

    I did not have DHE this hospitalization. I did get DHE while inpatient at my local hospital, and personally, I couldn’t have been very active while on it because it made me feel off-balance. Everybody (every body) is different, so your son’s experience could be completely different.

    Shiroduckie: “I haven’t started the mexilitene yet”

    Hi, Shiroduckie! Have you started the Mex yet? It took about 5 days for me before the weird side-effects ended, and I’m still not sleeping well at night.

    Julia32: “For the psychologist piece, they do not bill insurance and you are required to pay the full fee up front and then seek reimbursement from insurance.”

    This may have been different for me because I’m on Medicare. I did not have to pay upfront for anything.

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  • By Barb

    More working backwards…

    @bam1970live-com: “I understand all insurances are different but I’m looking for a “ball park” figure.”

    You’re right, every insurance will be different. I had ZERO out-of-pocket, except for parking and gas! I have Medicare and Carefirst Bluechoice.

    @shiroduckie, One of my nurses told me to NEVER TOUCH the IV machine, but another one showed me how to silence the ()*$)# alarm. This was after it went off for about 45 minutes while he was at lunch, and none of the other nurses responded to multiple calls. Fortunately this experience was a one-time thing. For the most part my nurses were pretty responsive. We must have been on different parts of the floor.

    I was fortunate to only have one very mild hallucination in the hospital, and another one at home. This was my main fear. I’m so sorry you had horrible ones.

    Reading? Ha! No focus.

    I agree that the food was decent. No gross vegetables. They were actually edible. I’m not a picky eater, though, so someone who is used to really good cooking might disagree.

    My room temp stayed consistent and reasonably comfortable. We must have been on totally different ends of the floor.

    I totally agree about the yoga instructor. I don’t think she “got” that migraine sufferers don’t exercise as much as other people. Who can exercise when your brain is about to explode out of your head?

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  • By Barb

    @julia32, my alarm was set so that it would go off once I set foot on the floor. I was glad, because I had all my “stuff” on the chairs next to the bed, so I wouldn’t have been able to get to it with the other alarm on. Some of the nurses were even willing to leave the bed alarm off all together once they saw that I was steady on my feet.

    Also, it IS possible to turn off the IV alarms, but some nurses won’t be willing to show you how. Keep asking until someone does.

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  • By Julia

    My son’s concern about limiting activity is for the entire time the DHE is effective, including after he goes home, because as long as the DHE is masking his headache, he will not have his usual warning signs that he needs to stop activity. His activities are already minimal. He does not walk more than a few steps – like 2 steps from his bed into the wheel chair and then 3 steps from the bathroom door to the toilet or shower, where he sits. His talking and listening is limited to 2 or 3 sentences every half hour with one person. So being in a hospital will definitely be much more stimulation than he is used to, even if he does not attend any classes.

    About the out-of-pocket, his insurance did process the $300 psychologist bill – they paid $138, leaving us with an out-of-pocket for that of $162.

    I hope we get that nurse that shows us how to silence the alarms. Noise is so critical for him. Noise like that could set him back months or even years.

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    • By Barb

      @julia32, the nurse who showed me was Stan. (I hope I don’t get him in trouble!) Ask for him. Tell them someone asked you to say hi. (And if you do get Stan, tell him Barb and her family did go to Tony Luke’s for cheesesteaks, and they were amazing.)

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  • By Barb

    Things to take with you:

    All your chargers (phone, computer, tablet, etc.)

    Extension cords

    Your own grippy slippers or Crocs unless you don’t mind hospital socks

    Comfortable clothes (I lived in yoga pants and T-shirts)

    Your own comfy blanket

    A CLIP LAMP!!! I can’t tell you how many compliments I got about mine from the nurses. I clipped it to the bed rail. I was able to have a small amount (25W) of non-fluorescent light directed exactly where I wanted it. They didn’t have to turn the room lights on to do much of anything. (ONE lab person insisted on room lights.) Mine had a translucent shade. I got it for less than $10 at Target or WalMart.

    Your own pillow if you’re attached to it. (I am.)

    Some snacks and sodas if you might want them between meals. (I can’t have sugar, so I brought some sugar-free chocolate. Otherwise, no dessert for me. They did have sugar-free jello, but jello is not my idea of dessert.

    A water bottle if you don’t like styrofoam cups.

    A cat. Just kidding. I missed mine.

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  • By Barb

    Also, @julia32, the rooms are small and at least my room didn’t have space for an extra person to stay, unless you don’t mind sleeping sitting up in a straight chair. If your son will need you there (and it sounds like he might) I’d keep asking AHEAD OF TIME until you find someone who can help you make this happen. Maybe there’s a room that does have room for a roll-away or something.

    If he’s under 18 I think you can stay with him, but I don’t know how comfortable you’ll be. Escalate this as far as necessary.

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  • By dizzyblonde

    Thanks everyone for sharing your experience with this clinic. I live in a state where there are no real headache specialists. I have had awful experiences with the doctors I’ve seen in my area. The last doctor I saw looked at me like I was crazy when I told her that I get severe pain in my sinus areas with my migraines. She had no suggestions for new treatments, so I suggested something and she said “oh, that’s a good idea”. I try to stay as educated as possible about this disease.

    I have tried about 8 preventives, some of which I’m still on and I’ve been told numerous times that I’ve tried everything. Going to Philadelphia would be quite a distance for me to travel, but I have severe headaches and vertigo and need to get better. I have days where I can barely function. I know this thread is about the Jefferson Headache Clinic, but if anyone knows of any other good ones could you let me know? I know a lot depends on which doctor I get.

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  • By Jules2dl

    Hello Julia;
    My heart aches for your son. Although I know very little about PCD, I truly believe that if any place will be able to help him it is Jefferson. I literally had a gut reaction when you said he is considering cancelling his stay. Why continue to make his world smaller and smaller when there is hope for improvement? I understand his fear, but if it was me in his position, I would be more afraid of reducing my world to a perpetually silent, motionless, unfulfilling place. What he has been reduced to is not living, it’s simply existing, and he deserves so much more. If there is hope for improvement through Jefferson, and I believe there is, why throw that hope away?
    I’ll be praying for him; please keep us updated.
    Hugs,
    Julie

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    • By Jules2dl

      @dizzyblonde
      I went to the Diamond Headache Clinic in Chicago for years (well over a decade anyway), and the Jefferson Clinic did more for me in 8 days than Diamond did in all of those years. Just sayin’…

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  • By Alicia

    @barb

    I tried the mex yesterday. It seemed ok until I tried to sleep overnight (definitely prevented me from doing anything more than dozing when I should’ve been conked out). Considering what happened with the lidocaine/muscle relaxer combo in the hospital, and that mex is supposed to be a replacement for lidocaine, I probably won’t be using it. I end up using muscle relaxers pretty often to try and avoid pain medication, so that’s not going to work (especially since I have to avoid NSAIDs for a while now).

    @julia

    Ask your son if he thinks he’ll regret not going. It’s what managed to convince me: I was at a point where I was told there weren’t many options my local doctors had for me anymore, so it was either suffer on my own or try something different. If I hadn’t gone, I’d still be in the same situation. At least now I have a few more abortive options that I didn’t before.

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    • By Jules2dl

      Oops, I meant to say that I also had severe vertigo along with the daily migraines. I took many falls because of the vertigo. I’ve not had dizziness or vertigo once since I’ve been home from Jefferson. Such a blessing!

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  • By Katie M. Golden Moderator

    @dizzy blonde
    As Jules2dl said there is the Diamond Clinic in Chicago and there’s also the Michigan Head and Neurological Institute. Those plus Jefferson are the top three.

    I’ve also heard good things about the Cleveland Clinic and the Mayo Clinic, but I’m not familiar with their programs. What state are you in? Are any of these closer?

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  • By Katie M. Golden Moderator

    @jules2dl,
    I’m glad to hear you’re seeing some results at home after being at Jefferson. I know it wasn’t fun being there, but no more vertigo is a great life improvement! I hope it continues!

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  • By Katie M. Golden Moderator

    @shiroduckie
    I found that the me wasn’t as potent as the lidocaine. I never had hallucinations while on it. But as others have said, it can make sleep very difficult. I was only able to get about 3-5 hours of sleep a day on it. But everyone is different.

    Besides that, how have you been feeling? Are you noticing a change in your daily headaches?

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  • By dizzyblonde

    Thanks Katie. It’s good to know where the in patient clinics are and therefore what my options are. I’m in TN but even though Diamond is closer to me, I haven’t heard as many good things about it. I tried to get into MNHI, but I was rear ended in a car accident last year so they refused to accept me as a patient. It was not a serious accident, but I ended up with whiplash. I found out other clinics have the same policy, they won’t accept a patient that has ever been in a car accident. One clinic told me even if it had been 20 years ago, it was against their policy. I’m just wondering who hasn’t been in a wreck by the time they get to their 30’s, 40’s and over.

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  • By Katie M. Golden Moderator

    @julia32,
    I can’t imagine being a parent whose child is in so much pain. I don’t have kids, but my parents still worry about me and helped out when I was at Jefferson. It’s got to be hard to know what to do. You only want to help him and give him a good life.

    Jefferson is a chance for him to improve. Considering his condition is so severe, you might be there a while. And the docs aren’t going to make him do anything he’s not readd for. It will be more stimulation than he’s used to, but a very large portion of the time he’ll be sleeping from the meds. Honestly he’ll be a little out of it, so it should be easier to tolerate.

    Please let us know what you decide. We’re all routing for both of you!
    -Katie

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  • By Katie M. Golden Moderator

    @dizzyblonde,
    I had no idea that some clinics won’t accept patients who have been in car accidents. That’s odd. Jefferson never asked me but I’ve never been in a severe accident.

    I’ll try to see if I can find out why but also look for other headache clinics.
    It sucks when you feel like you have no more options.
    -Katie

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  • By Julia

    shiroduckie, what new abortives did they introduce at Jefferson?

    I told him what you all said, also what my sister and cousin said, all thinking he should go. He will try to get more information from Dr. Young tomorrow, but his inclination now is that since prednisone has made his life the Hell it is today, he can’t risk another drug that could do a similar thing. He says he could not survive that. So he doesn’t want to risk any abortive med. He wants to try only preventatives. I don’t know what makes a preventative so different in his mind than an abortive. It is hard to have in-depth conversations with a person who can only speak two sentences at a time. He is very bright, and I am sure he has thought this through. I also have a call in to his local headache doctor with the same question: how do the benefits outweigh the risks of using these powerful drugs, when doing this has been disastrous for him in the past.

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  • By Jules2dl

    @katie
    My headaches are more under control now than they have been in more years than I can remember. Weather is still a trigger, but not every single time it rains/snows. I’ve only been down-for-the-count once since I’ve been home from Jefferson. I’m getting used to not sleeping, but what really gets me is that I can’t sit and do mosaics or paint for more than a few minutes at a time. I used to spend hours and hours doing art, and I miss that concentration and relaxation

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  • By Alicia

    @katie

    I haven’t noticed much of a difference in the pattern since the daily headache came back. I’m pretty much back to where I was, but I have options now beyond vicodin (though it’s still in the rotation, at least until my follow-up in January with Dr. Young).

    @julia
    I was given prescriptions for Migranal (nasal spray), haldol (pills), and toradol (injection). In the hospital, I was given the haldol via IV, and while it didn’t seem to make much a difference there, it definitely works now that I’m home to stop the pain (and no side effects that I’ve noticed). I had the Migranal in the hospital as well, and it seemed to really work for me, but it’s ridiculously expensive, so I need to get a 3-month prescription to make the cost remotely acceptable (same price for 2 retail as it is for 6 mail). (It does make me wonder if something is available in pill form in that same class since it worked so well, but no one around here seems able to compound Cafergot for me to try.) Toradol’s an intramuscular shot, and I’m a big baby when it come to sticking myself sharp pointy objects (plus not allowed NSAIDs for now), so I really don’t know how useful it will be.

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  • By Katie M. Golden Moderator

    @jules2dl,
    so glad you’ve noticed a difference! And it seems like a hard trade off when considering going off the me so you can enjoy your hobby or stay on it and get better relief. It’s all about your quality of life.

    Maybe you can ask your doc about taking a lower dosage to if that makes a difference in your concentration. Just a thought.
    -Katie

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  • By Julia

    I got a few more sentences out of my son. He reminded me that meds do not knock him out, in general they do the opposite – give him extreme anxiety, a wanting to jump out of his skin feeling, increase his heart rate and blood pressure, and make him feel like he would rather be dead. This comes from meds that knock out most people, like Ambien, Benadryl, Nortriptyline, torodol, and Topamax. I have had that reaction to some drugs too, as did my Dad, so maybe this is partially heredity as well as being from his messed up brain.

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  • By dizzyblonde

    Katie,
    I know, it’s crazy. And it was not even a severe car accident. I don’t want to lie about it to anyone, but I’m certainly not going to bring it up. MNHI did ask whether I had been in any car accidents over the past year or so while I was talking to the new patient person.

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  • By Julia

    This may sound like a dumb question, but can those who have been inpatient at Jefferson tell me how long doctors spoke to you at a time when they did their rounds or visited you in your room?

    Thanks, Julia

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  • By Katie M. Golden Moderator

    @julia32,
    i have a similar problem with Regland and Compazine. My skin crawls. Ativan canbe used to counteract those effects while still allowing the original med to work. Just a suggestion if he’s never tried that.

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  • By Julia

    @katie are these meds you take every day and so you would have to take Ativan every day? My son does have a prescription for a very light dose of Ativan which his California doctor gave him in response to his fears about the stimulation of air travel to move him back here. It did nothing for him at that dose.

    Thanks everyone for all the helpful suggestions and advice and if we go, we will look for Stan, Barb!

    My son left a message for Dr. Young this morning but was not his usual articulate self and I don’t think it was clear what he was asking. He wants to know what the alternatives to inpatient stay are given his risk for noise and abortive meds. At this point, we don’t think all alternatives have been tried yet and there was miscommunication about that at our consult. Dr. Young thought our local headache doctor referred us and wanted inpatient stay from Jefferson. That was not the case, and we should have corrected Dr. Young immediately about this mistaken assumption. But we didn’t so we are trying to fix that now only one week before he is scheduled to be admitted. Can you spell S-T-R-E-S-S?

    Julia

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  • By Katie M. Golden Moderator

    @julia,
    I was given high doses of Ativan at Jefferson when they gave me Compazine. I do not take it on a regular basis, however they said it was an option to have a prescription at home if I get those skin crawling feelings.

    As for other options at Jefferson, I believe the only out patient option is to go and get daily IV infusions. I’m not sure about the set up for that, so it’s possible it could be way more stimulation than staying inpatient. And I would suggest that you leave a message for Dr. Young since it’s difficult for your son.

    Keep the faith!

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  • By Julia

    We have not received a call-back yet from the patient help line message Joe sent yesterday. Yesterday he only had time to discuss his concerns about the medications before the message was cut off. So today he called again and left a very brief, succinct message: given my extreme sound sensitivities, doesn’t it make more sense to try Botox and other preventives and save risky inpatient for the last resort?

    His problem is different than most people with migraines. His primary problem is not severe headache. So he doesn’t really care about breaking the headache with abortives. Jefferson’s goal of breaking the headache only to have it recur has no value whatever to him. His primary problem is the dysfunction of his brain that makes any sound or activity worsen his headache. I agree with Joe that abortives are not the answer for this problem.

    I am hoping Dr. Young will still work with us to find an effective preventive.

    And the two people who described loud alarms – one that went off for 20 minutes, and another person who said 45 minutes. A loud alarm of any duration would destroy my son. He would have to rip out the IV, put on his coat and leave for home, in terrible pain. We just can’t put him in that situation.

    Julia

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  • By Julia

    I tried to accurately summarize the experience people here have had with Jefferson for my son, as he makes his decision whether or not to do it. I told him everyone had their headache recur in about a week, which is also what the nurse told us would happen. I told him one person had their dizziness disappear, But that everyone was glad they went, in spite of the fact their headaches all came back. He asked me why and I didn’t know the answer.
    Julia

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  • By Alicia

    @julia

    I’m glad I went for a few reasons.

    1. I wasn’t sure my headaches *could* go away. At all. Even for a short time. They did, from the hospital stay. That they came back was expected.

    2. I only had opiates and muscle relaxers before that could deal with the pain, and you can’t use them too often because (1) in danger of overuse headache where I’d then have NOTHING and (2) you become dependent on them eventually. Jefferson gave me a couple more options in different classes of medicine, so now I can rotate them if I need to.

    3. I ran out of options from local doctors as to a preventative (trying to keep the headaches to a minimum to start with, as well as reigning in my constant fuzzy-tv vision). Jefferson might come up with something that works (considering they do research on this stuff, and might have some idea what to do with me when my other doctors don’t), though it hasn’t happened yet (in the all of 1 visit I’ve had with Dr. Young and then the inpatient, and I’ve learned this is a long game, so I’m vaguely hopeful but not expecting much in the end).

    I’m looking for control, not a cure.

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  • By Katie M. Golden Moderator

    @julia32,
    I’m glad I went because the frequency and severity of the Migraines decreased. I was also given preventatives and abortives to take home that no one else had every suggested. While not a cure, it has helped me to manage the Migraines better.
    -Katie

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  • By Jules2dl

    @julia
    I’m glad I went to Jefferson because they effectively ended the chronic daily migraine I’d had for almost 3 years. The dizziness, vertigo, and falls I experienced every day have also stopped.
    I got off of meds that clearly weren’t helping, and got on to meds that do help. My migraines are less in severity and frequency, and better controlled now than they have ever been during my 44 year history with the beasts. Jefferson was a tremendous blessing.

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  • By Julia

    Thanks so much Katie, shiroduckie and Julie for answering my question. I summarized your answers for my son this morning and those are good reasons for him. He especially needs new preventative meds prescribed. We can push our local headache doctor to do this also but Dr. Young seemed surprised that this hadn’t already been done and so I’m pretty sure it would be done before we leave Jefferson.

    I also appreciate the suggestion to call the hospital nurses with questions appropriate for them. I will call them today to find the answer to the noise question. How to mitigate the noise in the halls and from other rooms even if he is able to silence his own alarms. Will keeping his door shut at all times help enough? Is the heater very noisy? He is able to tolerate the heater in my apartment, but he used to use fans to block out the traffic noise outside and now he is unable to tolerate the sound of the fan itself. So yesterday he said what if the heat at the hospital sounds like the fan? Are there sirens outside? I know Broad is one of the busiest streets in Philly – is there lots of traffic and truck and bus noise?

    I am so grateful for this group. It is better to be prepared with information and all of you have been so generous with your time and your sharing.

    Julia

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  • By Julia

    I called just now and talked to Alicia, one of the floor nurses. She was brutally honest about the noise level Joe would be exposed to and it sounds much worse than we thought. There is a PA system to call nurses that is in the hall but is meant to be heard inside the rooms, even when the room doors are shut. They frequently test the fire alarm system and that is likely to happen at least once and maybe more often while Joe is there. She said no one is allowed to shut off the bed alarm or the IV alarm except for nurses. I know she HAS to say this on the phone, but it does not help Joe decide to do this. I think she said he could not turn off the bed alarm, but that if the unit manager approved it, I could turn off the sound and then turn it back on again. She did say she would try to put him in a room as far away as possible from the PA loudspeaker, but that she could not guarantee this until she saw what beds were available Monday morning. She also said he should try to come, even if he is only able to tolerate it for one day, because he will still get some benefit in one day. Joe’s response to this is that exposure to noise doesn’t affect him right away so he would have already allowed much damage before he is aware of it.

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  • By Julia

    Joe is wondering if I misunderstood the nurse’s PA system explanation. I thought that was just a system for alerting nurses or doctors when staff needed them. But Joe thinks it might be going off whenever someone presses the nurse call button or someone in any room sets of an IV or bed alarm. Which is it? And does this occur all during the night?

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  • By Barb

    @julia32, in 6 days I think I only heard the PA system a few times. It may have been because of my location on the floor — I was at the far end (room 617.) I could hear faint traffic noises and sirens, but from the 6th floor it wasn’t very loud at all.

    With the door shut the only alarms I could really hear were my own. I made sure that everyone shut the door as they were leaving.

    There are definitely no audible alarms from other rooms just because someone pushed a call button.

    I’d say that at least the room I was in was reasonably quiet.

    Talk to Stan about turning off the IV alarms. The bed alarms are FREAKING LOUD and will definitely be more of an issue. There would be no way Joe could turn that alarm off by himself, but you could probably figure out how to do it. (It’s in a console at the foot of the bed.)

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  • By Julia

    My son has been at Jefferson 4 days. He was originally scheduled to be discharged on the 4th day but then it got extended to 5-6 days and yesterday at rounds it sounded like 7-8 days. So taking it one day at a time. Yesterday was the most hopeful day so far since they had his heart issues checked out that developed in response to the lidocaine and determined he could try it again with an antidote for the heart and anxiety issues but he is still on a low dose of it so headache still there.

    They are practical about the sound issues and those have not been a show-stopping issue. As long as his headache improves, he is willing to use his headphones as much as he needs them. On the phone, the rules sounded inflexible but then after we got there, they were more accommodating.

    So far he is glad he went.

    Julia

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  • By Katie M. Golden Moderator

    @Julia32- how is your son doing? Give us an update when you have a chance!

    @shiroduckie- it’s been a little while since you’ve been home, how have things changed for you?

    -Katie

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  • By Alicia

    Lately it seems like I’ve had more better days than awful, but this past weekend (Thursday night-Sunday) was a fun one with the dizziness, and I didn’t feel totally back to normal until today.

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  • By Julia

    Katie, Thanks for asking about Joe. He stayed 9 days at Jefferson and while he had some brief periods where his headache got a bit better, it got worse again the longer he stayed. Our analysis is that the lidocaine did help but the stimulation of being in the hospital and all the talking and listening he had to do canceled out the benefits of the medication. Now that he is home he is finding a small benefit from the mexilitene. This has given him hope that he can come out of this prison he has been living in. We will be trying botox before the end of the year and he also is considering the neurostimulator.

    The physical therapist at Jefferson, Jessica, was very helpful in showing him small steps to regaining some cardiovascular fitness and he has been very diligent about doing the exercises at home. His first goal is being able to walk to the bathroom and back to bed. I’m all for that goal since it would free me up so much.

    Dr. Young is a dynamo and his optimism was catching. I think Joe got an infusion of hope and courage from having Dr. Young as his doctor. We return Jan. 8 for our follow up appt. with a nurse-practitioner since Dr. Young was booked all month. Meanwhile, we hope to keep getting his advice by using the patient call line.

    Julia

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  • By Jules2dl

    @julia ~
    I’m so happy to hear that Joe is seeing some improvement! Even the littlest bit helps! As for your opinion of Dr Young, I agree…I wish he was my doc! Hope is a blessing, and I’m glad Joe has been infused with some.
    @katie
    I’ve noticed that the mexiletine seems to work better over time. My biggest trigger is weather, and it has been raining here all day and I haven’t had a migraine in a week! That is a major victory for me. When I first got home from Jefferson I was still getting migraines with every change in weather, but I’ve noticed recently that’s no longer the case. Also, I’ve noticed a distinctly good feeling in my head at times. It’s difficult to describe, but it’s very welcome! I’m totally not used to having a good feeling in my head, that’s for sure. I’m still not sleeping well and can’t get back to my art, but I guess that’s a small price to pay. I saw my local neurologist and he is willing to work with Jefferson. Dr Young convinced me to try Botox, so that is in the works with my insurance. He also is getting the equipment to do SPG nerve blocks, so that is a future option. My abortives have not been working since I’ve been home.
    I wish everyone a happy holiday season and a healthy new year!
    Shalom,
    Julie

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  • By Jules2dl

    Just to clarify my above post:
    My local doc is getting the equipment to do the SPG block, not Dr Young.
    Bad grammar = yuck!,
    Julie

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  • By Katie M. Golden Moderator

    Hey Everyone!
    I’ve been a little quiet over the holidays with family fun.
    @Julia32- I’m really glad to hear that Joe is finding that Jefferson was helpful. And I hope he’s recovering well at home. Dr. Young is really kind and compassionate, which makes the whole process better when you feel you can trust your doctor.

    @Jules2dl- Have you done the SPG block yet? Would love to know how it went for you.

    I recently had a follow-up appt at Jefferson and will most likely be going back in February for an in-patient visit. This will be my 3rd stay and the effects of the treatment seem to help me really well for about 6 months. I would love to get more mileage out of the treatment, but am grateful for the relief I get and am so thankful for the docs at Jefferson.

    I hope everyone has had a great holiday!
    -Katie

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  • By Jules2dl

    @katie No Katie, I haven’t had the SPG block yet. My doctor wants me to go back to the ENT who did my septoplasty first, since I’m still having daily problems with sinus congestion.
    I’m curious to know how far away from Jefferson you live. Going there for a follow up seems daunting to me. It was such a project to get there the first time!
    @julia, I hope Joe is still seeing some improvement!
    Wishing you all a Happy & Healthy New Year~
    Julie

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  • By littleb15

    Hi Everyone! Saw your posts about SPG blocks. I’ve had occipital nerve blocks without any relief. Is this block something different? I’ve never heard of this before. It may be something I want to try. I just tried the Cefaly with terrible dizziness side effects. So this is another migraine relief possibility down the drain. Going to try another round of Botox the first week of February. If all else fails, I have an appt with Dr Silverstein at the end of February. I’m trying to exhaust all possibilities before going to Jefferson.

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  • By Katie M. Golden Moderator

    @BAM1970- sorry it took me a while to get back to you. Yes an SPG block is different than an Occipital Nerve Block. In the most basic of explanations, it is kind of a nasal spray administered in the doctor’s office that is aimed at a bundle of nerves located behind the sinuses. I’ve never had one performed, but you should definitely ask your neuro about it. Here’s more information on it:

    https://migraine.com/blog/facial-pain-explained/

    Also, how many Botox treatments have you had? It can take up to 2 or 3 times before you notice a difference. Here’s some info on Botox that might be helpful:
    https://migraine.com/blog/botox-basics/

    I hope you have a positive appointment with Dr. Silberstein next month. Out of all the doctors at Jefferson, he can sometimes be very matter of fact and quick. But if you come prepared with questions he will stay and answer them all.

    -Katie

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  • By Katie M. Golden Moderator

    @jules2dl,
    I live in Washington DC so it’s a huge pain to get to Jefferson. By car it’s about 2 1/2 to 3 hours. I used to have a friend who lived in the city, so I would stay with her the day before, but she recently moved. I’d say 90% of the time I go to Philly, either my boyfriend or mom are able to come with me so I don’t have to deal with the drive.

    If for some reason I have to go by myself, I’ll take Amtrak. I set an alarm and sleep both ways.

    I don’t have to go often because my Headache Specialist in DC did her residency at Jefferson. I usually do regular appts with her and when she feels it’s time for treatments she can’t perform, she sends me up to Jefferson.

    While it can be a lot of travel, it’s so worth it to me!

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  • By Barb

    @katie, I’m near Baltimore and my husband takes off work and drives me each time. If we could coordinate appointment times maybe you could ride up with us. My next appointment is on 1/20 in the early morning.

    I see Dr. Silberstein and love him. He is quick, but not dismissive. And considering everything he has on his plate I feel incredibly grateful to have him as my doctor.

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  • By Julia

    I am happy to see that some of the people like Katie and Barb who have helped me here are also my neighbors!
    I drove up to Jefferson today for the hospital follow-up visit with the nurse practitioner and I am exhausted and feeling like it was not worth the trip and the risks of driving at my age and in my own health condition. Our next follow-up is with the doctor but not until March 19, so a loooooong time away. How often do you Jefferson patients follow up when you are traveling? I am wondering if in addition to the March 19 appt., we should schedule the next one, so maybe we don’t have to wait so long.

    Joe had Botox Dec 31 but no benefit yet. He is doubling his mexiletine. But we want more action and are not getting it. So frustrating. We have an appt for a consult with the Neurosurgeon who does neurostimulators at Jefferson on March 1. That will have to be approved by Dr, Young so not sure how that will go. Joe is so disabled and wants his life back/
    Julia

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  • By Katie M. Golden Moderator

    @julia32 do you have a Headache Specialist that Joe goes to near your home? I’ve been able to have my doc at Georgetown University work collaboratively with Jefferson so I don’t have to go to Philly so often. It also helps that she did her residency there and all the Jefferson docs know here. In the past when I felt meds weren’t working, I left lengthy messages for the doc at Jefferson and we had a phone consultation because he knew it was hard for me to get there. If he wanted to change up my meds, he would mail me a new prescription. It sometimes took a day or two to get back to me, but maybe that’s something you could try.

    And as you meet with other doctors about nerve decompression or the neurostimulator, you should definitely call Dr. Young to discuss instead of waiting until your next visit.

    Also, Botox can take 2-3 times before it makes a difference, so don’t get discouraged yet. Your body needs time to adjust.. I wish it could happen overnight, but you have to be patient.

    -Katie

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  • By Julia

    Barb, that information really helps. We were told yesterday to make a follow-up appt. with Dr. Young for 6 weeks, but since Dr. Young is scheduling 10 weeks out, it ends up being 10 weeks instead of 6 and Joe would have liked 6 weeks at the most. So I will call Monday and get an appt. 6 weeks after March 19! We live in Alexandria. It took 2 hours and 45 minutes to get to Philly and 3 hours and 15 minutes to get home. I was almost crying getting through the Washington rush hour traffic in my fatigue.

    Katie, Joe does have a local headache specialist and they are the ones doing his Botox. He does want to keep Dr. Young since Dr. Young has many ideas for additional things to try if the current meds do not work well enough. Unfortunately, we didn’t meet with him yesterday, we met with a nurse practitioner who would not share any ideas for additional meds with us – she said we would have to wait and discuss that at our next visit. I don’t think she feels the desperation of a 32 year old who has just finished school and started work and then became totally disabled and has spent a year this way – unable to read, listen to audio, look at screens or have long conversations.

    When you leave lengthy messages for the doc is that through the patient call line? We have used that several times but Dr. Young does not return the call. It is a nurse and changes to meds have not been done that way – she has said to wait for the follow up visit- but at the follow-up visit yesterday, no meds were changed then either and we started feeling very discouraged after we left and so Joe called the Call Line this morning to suggest 2 new abortives. I don’t know what the response will be. So far this method has not worked for him. When you call the call line, do you specify that you want a consult with Dr. Young?

    Thanks for your responses Barb and Katie!
    Julia

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  • By Julia

    My son Joe is scheduled to go back to Jefferson Methodist Hospital on Friday for about a week stay. His condition continues to deteriorate and nothing has helped it in the year I have been caring for him except the slight improvement for a month after his Jefferson stay of 9 days in December. He has decided that going again is his best hope for any improvement. We tried 13 sessions of two different types of Neurofeedback, but they were not effective.

    Hope you all are doing well.

    Julia

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  • By Katie M. Golden Moderator

    @julia32,
    I’m so glad that Joe found it helpful and is willing to try it again.

    I was actually at Headache Camp last week, but for a different infusion of ketamine. I’ll be writing about it soon. Still coming out of the fog.

    Keep us updated!
    -Katie

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  • By Julia

    Thanks, Lisa!

    Katie, Dr. Young mentioned the ketamine treatment, but decided the Methodist plan is probably the best bet since it did work a bit once and we don’t know what the other one would do. I can’t wait to read your experience with it. Where do they do that? He also prescribed Oxytocin for Joe, which is still experimental for headache and has to be compounded. We are still waiting for the pharmacy to check our insurance on doing that for us and we will probably get it after we get home from the hospital.

    Julia

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  • By Anonymous

    I just found this site. My doctor has told me to go Jefferson Clinic since I have failed all the meds he has suggested. I am a doctor and hospital phobic, which I know is completely unproductive. My first appointment is May 21. Any advice?

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  • By Skaterx999

    Katie, thanks fro starting this group. My wife goes to the Georgetown Headache center as well, and probably sees the same doctors. She is about to take her first trip to the Jefferson center and we’re hoping that they can help her get back on track. She’s had migraines for at least 8 years, but they were fairly well managed until about 2 years ago. Now they are shattering her quality of life and have all but derailed her career. I’ll keep you guys posted on how her visit goes, as well as I can.

    Is there any way to view the messages here in chronological order?

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    • By Katie M. Golden Moderator

      @skaterx999,
      Please let me know if you have any questions along the way. Sadly, I feel like Jefferson is a second family. They have been amazing at doing treatments that Georgetown didn’t offer. She’s definitely in good hands. I’d say go in with an open mind with no expectations that they will be able to cure her. It’s all about finding the best way to manage her illness.

      And sorry, I don’t have a trick to show the posts in chronological order.
      -Katie

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  • By imorgan

    Hi,

    Thank You for all the helpful information!

    I was wondering how to go about making an appointment with the Jefferson Headache Clinic? I have called several times and left several messages but have not heard back. Is this the norm? Thanks!

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  • By grammy08

    Hi I have been referred to go to Jefferson headache clinic. I am a little nervous about going. I have been suffering with complex miagraines since I have been in second grade and I am 52 yrs old now and they are getting worse and more aggressive. I have been to a lot of neurologists and never any long term results. This has been 45 yrs and I am at the breaking point. I don’t drive well or see well my vision continually changing my brain feels like it is scrambling. I have visual miagraines I get numbness that is associated with the miagraines that resembles strokes and my memory that seems to be getting funny. Any information or encouragement you can give me would be greatly appreciated. Thank you

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  • By Nancy Harris Bonk Moderator

    Hi grammy08,

    Thank you for reaching out and being part of our community – we’re glad you’re here!

    Good for you! Seeing a true migraine/headache expert is a great step in getting an accurate diagnosis and treatment plan. The Jefferson has some of the best doctors in the headache world. I’ve heard many, many good things about them and have two of the doctors there.

    If you have trouble getting through, don’t give up! You may need to be persistent with calling them, but that will pay off in the end.

    Keep us posted on how you are doing,
    Nancy

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    • By Rebecca Keymaster

      Hi @grammy08

      Just wanted to chime in — I’ve been going to the Jefferson Headache Center for almost 9 years now. My doctor is Dr. Nahas.

      I felt the same way as you described – and almost panicky because I kept thinking, “What if they can’t help me?” I have had migraines since I was 6 years old and then developed cervicogenic headaches (which is my main problem now). I was really at a breaking point and scared.

      A few things that might be helpful to know:
      1. Be prepared that you may have a wait. Waiting times have improved incredibly since I first started going, but due to the volume of patients and the amount of time they spend with you, it can take a while. Especially for a first visit – they go over a lot.

      2. When you arrive make sure sure you check in on the laptop that is next to the main service desk (you’ll see signs)

      3. They are very anti-narcotic pain relievers. In 9 years I only received a narcotic once (it didn’t help me anyway!).

      4. These truly are the best doctors. I’ve seen a few others in the practice, and all have always made me feel like they are truly listening and care. I’ve never had a bad experience with their treatment teams. The toughest part (as many have posted) is dealing with the phone system and leaving messages. Again, I attribute this to volume of patients.

      I really wish you the best of luck and will send good vibes your way. Please let us know how it goes and how you feel about the treatment plan they recommend.

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  • By GardensatNight

    I have kind of a weird version of chronic migraine and am in desperate need of a doctor who isn’t afraid of tough cases.

    My main problem USUALLY isn’t out of control migraine or migraines that go on for months, although that happens too, and I am on the tail end of a two-month streak that was absolute hell. My triptans/NSAIDS no longer work for more than a few hours before the migraine recurs. I think I had MOH going on too, even though I was always careful not to take them more than 2-3 times per week. But that’s beside the point…

    My main problem is that I am SO oversensitized to triggers that even a tiny exposure always ALWAYS triggers migraine. And my triggers include:

    -All man-made light and direct sunlight (which essentially traps me in my house… can’t drive since 2015, haven’t been to a store in years, no TV, movies, cell phone, have to use special computer screen from china with no light/flicker). It takes a one second exposure to flourescent or LED light and it’s like I’m having acid poured in my brain. And then the migraine comes. We don’t take me anywhere except when husband drives me to the doctor and I go in blindfolded with a blanket over me.

    -Sound. I used to be a music teacher until a few months ago. But now the sound of my fork touching my plate makes me want to cry, and we had to switch to paper plates, so you can imagine, all music/instruments/children being children is WAY too loud. (I had been using earplugs at school for several years already at this point, and even with the over the ear protectors–like people wear when directing airplanes–it isn’t enough.)

    -Cold fronts. I’m toast. Can’t avoid air.
    -Food. I’m good here. I completely control what goes in my mouth.
    -Reading-my eyestrain has gotten so bad that when I get a migraine I can’t use my eyes for a few days, and even after that, only for an hour or two a day without triggering a new headache
    …and I just get more and more sensitized to EVERYTHING with each passing month. I’m so scared about what will be next. I need experts, but when I say this to my neurologist that I need an expert in people with wacky sensitivity to triggers, she says there aren’t any.

    So, I’m basically trapped in my dark house by my triggers. Fortunately I have a great husband who is the best person on the planet. But this disease is really limiting my life. I have days where my pain is just a background thing and where it’s not constant. But if I were to step out of my carefully controlled box and upset any of these triggers, instant migraine.

    I don’t know if anyone can fix me. None of my neurologists (3) so far have known what to do with me. All of the neuro-ophthamologists (3) I’ve seen thought maybe the light sensitivity (which is the most limiting) could improve somewhat if I could have fewer migraines. But we can’t seem to make that happen. I’m on a bunch of preventatives, do botox, infusions, etc.

    My neurologist (who isn’t a headache specialist–I went to the only one in town for years, but he doesn’t do botox and I had exhausted all the treatments he offered) wants me to get a second opinion, which I agree I want too. But I also feel like she is just pushing for it because she doesn’t approve of people with migraine being on disability. She doesn’t get it. I feel very demeaned. Of course I wish I could be healthy and go back to my old life. Don’t we all? But I was getting a migraine triggered every day by the accidental light flashes and sound at work. Those last few weeks triggered the two-month out of control migraine we couldn’t stop even once I was at home and getting infusions every week.

    Anyway, sorry for the long story. We live across the country from Philly. But we have travelled out of state to see doctors to try to fix me before. Would the doctors at Jefferson be a good fit to try to fix me? Would they be willing to work with my local neuro if I went to see them x number of times per year? I loved what Dr. Young said about migraine and stigma, and how it can be disabling. I would never have chosen this.

    Thanks for reading.

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    • By Katie M. Golden Moderator

      @GardensatNight,
      Thanks for sharing your struggles and being honest about your frustrations. You’re not alone.
      First I have to say that nobody can fix you. There is NO cure for migraine disease right now. Focus should be placed on finding better ways to manage your pain. Even reducing your average pain by a few points can be life-changing.

      I’m sorry your neuro hasn’t been helpful and made you feel that way. It’s definitely time to get a second opinion! Where do you live? There may be headache specialists reasonably close by to try before getting on a plane to go to Jefferson. This link lists all of the certified headache specialists. https://www.ucns.org/globals/axon/assets/10300.pdf

      Of course, I’m not discouraging you to go to Jefferson either. I know they have a long wait list for new patients (as do most headache specialists) and then scheduling an in-patient hospital stay could take another 3 months after that. Again, I want to be realistic with you.

      Also, another alternative is to find a pain management doctor. There are many who will do one-day ketamine infusions in the office. If you can find one near you, it just might be worth trying and you could probably get in faster. Or make the appt with Jefferson and go to a pain doctor while you’re waiting.

      I am so grateful to Jefferson for what they have done for me and I encourage you to look into it more. Just knowing that travel would be hard for you, I thought it would be helpful to have some other suggestions.

      I hope this helps and feel free to ask more questions.
      Be well!
      -Katie
      Migraine.com Team

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  • By GardensatNight

    Thanks for answering, Katie. I’m in Texas. More than anything, I wish I had a neuro that I felt like was on my team. My neuro flat out told me and my husband she thought I was making up my light sensitivity. She just doesn’t get it, and it’s so demeaning to have to keep going to a doctor who thinks I’m a liar. Who doesn’t beieive my symtoms are rel and when I tell her I haven’t been able to read for months without triggering a headache… I had to start using a screen reader to type bindfolded…. doesn’t take me seriously or understand the level of despair I feel. I’ve tried to look at patient reviews for all the headache specialists in nearby cities but they see to say the same things… that the doctors just won’t listen. I feel very discouraged.

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    • By Rebecca Keymaster

      @GardensAtNight –
      Wow – your neurologist actually said that? Man. Time for a new one. That’s just unacceptable (and, honestly, light sensitivity is one of the most common symptoms!).

      It’s so frustrating when doctors don’t take us seriously. I mean, we’re dealing with enough as it is – – we don’t need to feel dismissed by the very people we need to help us. Eventually you will find someone — but like Katie said it’s not easy sometimes. I really hope you can start getting the treatment you need. Let us know how you make out!

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  • By Katie M. Golden Moderator

    GardensatNight,
    I am a firm believer in educating doctors about our condition. Unless they specialize in it, they don’t get it. And to tell someone that they don’t believe them is horrible. First rule in my book is to never blame the patient!
    I do know that there are a few pain specialists in Texas that will do ketamine and there’s several headache specialist in your area. The link I provided should help you find a specialist. There’s a Facebook group called Ketamine and Migraine- you may want to check them out. They have good information and I know of a few group members who get infusions in Texas.
    I’m proud of you for wanting to take the next steps. It’s not easy. I hope this helps to give you a starting point.
    -Katie
    Migraine.com Team

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  • By GardensatNight

    Thanks, Rebecca. I have been trying for the past week to find a headache specialist closer to home with zero luck. They may be interested in treating plain, uncomplicated migraine, but NO ONE wants to treat migraine coupled with severe photophobia coupled with severe phonophobia.

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    • By triciaf

      Hi GardensatNight. This is my first time writing here. I have a similar profile to yours, but my docs have believed me-shocked at your situation! I had to go on disability and am stuck in my dark bedroom but luckily have a great husband. My headache Dr. referred me to Jefferson and helped me eventually get thru. I had my intake in early May and will enter in-patient on July 6th. I wanted to ask you about what (and how) you got from Japan so you can see your phone and/or iPad? Thanks and good luck with finding a better doc.

      My other questions are about the food situation and visiting hours or rules at the hospital. I know they say “restricted caffeine ” but am not sure what that means. Coffee in the AM? And can I bring my other med’s from home so I can take them at the right time? For example, thyroid, blood pressure, vitamin D…..?
      Thank you

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  • By spill1983

    My first appointment is in a week in a half. Does anyone know how long it takes to get admitted for inpatient treatment if that is recommended? I would like to have a better idea of what to expect, especially regarding timelines. Any input is appreciated!

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    • By Katie M. Golden Moderator

      @spill1983- If inpatient treatment is recommended, they are currently scheduling 2-3 months out. Typically they do a hospitalization where you get a lidocaine infusion (along with other medications). If you don’t respond well to lidocaine, then they would do another inpatient infusion of ketamine. It is a long process, so be mentally prepared. And sometimes you won’t notice a difference until weeks later. Let us know if you have any questions!
      -Katie
      Migraine.com Team

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    • By Katie M. Golden Moderator

      @spill1983- If inpatient treatment is recommended, they are currently scheduling 2-3 months out. Typically they do a hospitalization where you get a lidocaine infusion (along with other medications). If you don’t respond well to lidocaine, then they would do another inpatient infusion of ketamine. It is a long process, so be mentally prepared. And sometimes you won’t notice a difference until weeks later. Let us know if you have any questions!
      -Katie
      Migraine.com Team

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    • By spill1983

      Thanks Katie! I am so thankful for everyone being willing to share their experiences. I have been seeing a neurologist for just over two years now for my chronic migraines and when she told me “I give up”, I about had a breakdown. Thankfully she has referred me to Jefferson, and while I am not looking forward to the travel, I at least have some hope again, though I am still petrified they will not be able to help me.

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  • By GardensatNight

    Triciaf, the screen is made by Dasung. It’s from China and it’s called a Paperlike http://www.dasung.com/english/
    It’s an E-ink monitor so it’s just like the earliest Kindles. It doesn’t flicker or flash. It doesn’t emit any light at all. It is THE ONLY way I can use a computer. I cannot use a cell phone. Being flashed with the screen even for a second triggers a migraine. I just use the house phone.

    The one trouble with the Dasung screen is that it’s a secondary screen, so it has to be booted up by another screen (i.e. if you absolutely can’t look at a screen for even a second, someone will have to turn on a regular screen, double click to start the Dasung, then turn the other screen off. Or, if you’re not as sensitive as me, you can do it.)

    It is like a Kindle, so it doesn’t want to do things like play a video, etc. But then your brain probably doesn’t like that anyway, if it’s sensitive enough to need this screen. It works fine for web browsing and regular activities if you set it to the A2 setting (where stuff is literally black and white.) When we tried to make it do a bunch of grays, it would freak out and freeze a lot. Not perfect but SO MUCH BETTER THAN NEVER GETTING ON A COMPUTER. I love Dasung for making something that works for me.

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  • By triciaf

    Katie, When in the hospital. The literature says “restricted caffeine ” but am not sure what that means. Coffee in the AM?

    And can I bring my other med’s from home so I can take them at the right time? For example, thyroid, blood pressure, vitamin D…..?

    Thank you,
    Triciaf

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  • By littleb15

    Hello! I was reading these posts about the Jefferson Headache Center. One in particular mentioned that her doctor was eventually able to help you get through to set up an appointment. I’m having a horrible time trying to set up an appointment. Ive been trying to set up an appt for over 3 months now. I’ve had 3 doctors tell me to go to the Center. I’ve left messages and messages but cannot get anyone to call me back. Can anyone tell me how my doctor can get through to set up an appt? Is there another phone number I can try? A phone number just for physicians? I would appreciate any advice. I’m getting pretty desperate. Thanks so much!

    Beth Riley
    Fairmont, WV

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