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Headache Camp

Last summer, as millions of kids were headed off to camp, I was preparing to go too. I bought new pajamas, I stock piled magazines, and had a list of movies to watch while I was away. But I wouldn’t be zip-lining or doing potato sack races. I was going to Headache Camp…somewhat of a last resort to control the Chronic Migraines. The only medal or badge I hoped to earn by the time I left was a life with more manageable headaches.

I would be spending 3-7 days at the Jefferson Headache Center in Philadelphia. Affiliated with Thomas Jefferson University and Medical College, this Center is only one of a handful of its kind in the US that specializes in Migraines (not just pain management) and has a dedicated in-patient program (that my friends dubbed “Headache Camp”). My neurologist said most patients leave with significantly reduced pain levels although their goal was for me to leave pain-free. Some patients get relief with only need one treatment, while others come back once a year for a “tune-up.”

Admission

The admission process to get into Headache Camp was as rigorous as getting into Yale. It wasn’t until after I’d spent years trying to control my Migraines with my Headache Specialist at Georgetown University Hospital in DC, did she finally say it was time for a trip to Jefferson. My initial consultation with the Center included a full recital of my medical history plus loads of paperwork, a 400 question personality test (called MMPI-2) and a one-hour session with a psychologist. The Center believes in treating the whole person and not just the disease, hence the therapist and personality test. Also, depression and anxiety can be comorbid with Migraines. Delving into your personal background will only help in the treatment process. After a four hour evaluation, the team at Jefferson agreed that a stay at Headache Camp was the next step for me.

Initiation

Excited to get the party going, I arrived prepared to stay as long as it took to battle the Migraines. My friends armed me with a handmade blanket, a horseshoe necklace for good luck and coloring books to pass the time. But I didn’t have too much time to get cozy. Initiation into camp began upon arrival with the placement of a PICC line in my arm (instead an IV) in order to better administer the drug cocktail I would be taking. At any point, I was on 6 medications at a time, although it changed daily depending on my body’s reaction. The mix usually included meds for anti-nausea (Phenergan, Zofran or Compazine), anti-inflammatory (toradol), an ergotamine (DHE), an anti-epileptic (keppra), and magnesium. I was now permanently tethered to my IV stand, only released for 15 minutes a day to shower and change…

I’ve been on a combination of all these drugs in some form or another without success. What makes this in-patient treatment program different is adding Lidocaine in the mix to control the pain. Most commonly used to treat cardiac arrhythmia, Lidocaine is an anesthetic. It can be used by dentists for procedures, as a topical numbing agent, and in higher doses as anesthesia for minor surgery. In recent years, doctors have discovered that Lidocaine can be effective in treating chronic neuropathic pain. The drug works to desensitize pain pathways. As my doctor explained to me, the drug gives your brain a vacation, a chance to forget that it constantly fires migraines. The desired effect would be like rebooting a computer.

Sounds great and makes sense. Until the doctor tells you to be prepared for the HALLUCINATIONS. Yes, you read that correctly. At therapeutic levels, Lidocaine causes hallucinations. This is why the treatment is considered a last resort, after everything else has been explored. I had no idea what to expect, but bring on the dancing bears and purple dragons if it means less pain!

Camp Activities

Before the Lidocaine fully took hold, I had a few days of rest. Sleep is a popular sport at camp. Most of us are champions at home and being here is no different. The majority of the time was spent in my room listening to music, writing and watching Revenge. A dear friend of mine who lives in Philly visited every day. We went through a National Geographic magazine and decorated my room with tigers from Bangladesh and palm trees in Puerto Rico. My loved ones became my pen pals through email status updates and I enjoyed reading their words of encouragement.

Once a day, the camp counselors rallied us together for a class (assuming I could manage it). Each day was different- Chair Yoga and classes in Coping with Stress, Family Interactions and Dietary Needs. These were great topics and offered all patients a non-judgmental place to share their feelings or fears.  It also gave me the opportunity to meet other Chronic Migraineurs for the first time. It was amazing to talk to someone who basically had a similar path in getting to Headache Camp. Occasionally the psychologist would stop by to check on my progress and see how I was handling the medications, hallucinations and my expectations. It was nice to be in a place where I felt understood.

Getting Down to Business

As the days progressed, so too did the doses of Lidocaine. By Day Three I began to see shapes and colors, whether my eyes were open or closed. I became dizzy very easily and I had a bed alarm requiring me to ask for help when getting out of bed. On Day Four, I started to slur my words and have extremely vivid dreams. Day Five became melancholy and emotional. Day Six, I was giggly but didn’t make much sense, which was frustrating. I also started seeing more complex hallucinations than just shapes. A man in my room disappeared after I told him he wasn’t welcome and a pack of menacing wolves visited me another night. Not gonna lie, it was a dark place toward the end of my stay.

But I knew there was a reason for going through this, the potential to reclaim my life. Before coming to the Center, I lived at a pain level of 7 (out of 10). Over the eight days at Camp my pain fluctuated, which was normal. On Day Five I had a breakthrough after my doctor performed an occipital nerve block. I was immediately teased with a complete lack of pain! The dreary fog that had clouded my head for years had lifted. I couldn’t help but think about the possibilities of returning to normal. Maybe I could go back to work soon. I felt a peace inside me. I laid in the dark and enjoyed the Lidocaine fueled shapes and colors swirling around me for the first time. And I drifted into sleep.

Hours later when the nurse woke me to perform an EKG, my happy blissful state vanished. The pain returned in full force. Tears rolled down my cheeks, pooling in my ears as I laid there hooked up to the monitor. I was trying to keep it together, but I unnecessarily blamed myself for the relapse. What was worse- knowing what it was like to live without pain for a few short hours or to never have had that experience at all? Sometimes life just isn’t fair.

The temporary relief was promising to my doctors and my drug cocktail was increased in hopes of recreating a pain free environment. While the headaches never completely subsided again, my pain hovered around a 2-3 level by the time I was discharged.  To me that had a potential to be life-changing.

Going Home

I was nervous to go home, not knowing what my new normal would be. During my time at Headache Camp, I met 2 people with extremely different stories that made me wonder what my fate would look like when I left. One man had Migraines for 15 years. He had been at the Center for 2 days when his headaches broke. He had complete relief for 48 hours and he was going home that day. In contrast, I met a woman who had been admitted to the Center six times with her most recent stay 3 months ago. She said a week-long visit was the only thing that helped her to control the pain. I’m an optimist, but I didn’t expect a miracle for me. I would count my treatment a success if I ended up somewhere between these two extremes.

The week after I left Jefferson, my emotions were a mix of hopeful and frustrated. If a headache hit, I could take Relafen and get relief- a huge improvement over needing triptans and opioids. The mental fog stayed away, which made me giddy. On the other hand, I was having a hard time with the Lidocaine substitute I was given, mexilitene. I felt jittery, like my skin was crawling and I stayed awake for days on end. My neurologists from Georgetown and Jefferson consulted on my medications so I could get some relief. But within a week, the sun began to dim and the fog rolled in. The occasional headache became chronic once again. My hopes of returning to work slowly slipped away.

Next Steps

Overall, I would say that the Migraines have changed positively. While they are just as frequent, the severity has decreased. I used to live at an average pain level of 7 and now I’m more comfortable at a new 4-5 level. Of course, I still have daily flare-ups where the pain can go up to an 8 or 9 and I work hard to use yoga and deep breathing to get through it. I’ve continued Botox therapy but find I still need a trip to the ER when it starts to wear off.

Headache Camp was not as successful for me as the doctors had hoped. Apparently I’m a tough nut to crack. They say some patients see better results with additional treatments. Think of it as chipping away at the layers. I’ve only scratched the surface. So on February 3rd, I’ll be returning to Headache Camp for round two.

This is just my story. Clearly I believe that it could do some good, or I wouldn’t be going back. I’m also aware of how scary it sounds, having all of those drugs pumped through you and causing you to see castles on fire and a marching band rehearsing in your room. In the grand scheme of treatment, I try to balance alternative methods of healing along with medication. The Jefferson Headache Clinic may not right for everyone, but I wanted people to know it’s out there. It’s not a quick fix or a quick process (I didn’t even go into the maddening insurance issues).

I’m cautiously optimistic for my stay next week. I’ve learned with any treatment to go in with an open mind but not have unrealistic expectations. Maybe one day I’ll be pleasantly surprised. So wish me luck and I’ll follow-up with my adventures from Headache Camp.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • IrunonDD
    3 months ago

    Thank you for this. My 18 year old daughter goes in tomorrow for the migariane she has had 24/7 for two years at a constant 8/10. This was insightful ( even though I hope she doesn’t have to keep going back ) I like the reminder to focus on less pain and not complete pain reduction! No one mentioned the hallucinations ( she had college work she was planning on doing) good to know that might just have to wait. Thanks again for sharing your experience!

  • noelle_elissa
    3 years ago

    Hi Katie,
    I was just wondering have you ever had a reaction to DHE, my doctors at phoenix children’s Barrow neurological tried everything and there last hope was DHE but it cause me to have an hour and forty minute seizure. This headache camp sounds like an option for me my neurologist has brought it up but its just the DHE part that i am scared about because i don’t really want to go through that again. I have read your other articles and seems like our migraines are similar i have done all the same meds except for me the botox shot only made the migraine worse.Any Advice??

  • Katie M. Golden moderator author
    3 years ago

    Noelle,
    Thanks for the info. It really does sound like going to Jefferson or another in-patient headache facility is best for you.

    Sometimes when you call to make your first appt, it takes longer to get in with an Attending physician. Ask about a resident and you’ll get in faster. The resident consults with the doctor immediately and they usually go over their recommendations together for you. Just a tip.

    -Katie

  • noelle_elissa
    3 years ago

    Hi Katie
    I have tried nerve block shots and they worked for two hours and I have done the spsso many times it doesnt work anymore, my neurology team has signed off because they have literally tried every drug they have and i have done every alternative they are calling it chronic migraine

  • Katie M. Golden moderator author
    3 years ago

    Noelle,
    I’ve never had a reaction like that or any at all with DHE. I’m sure they would take that out of your medications they would give you if you went for an in-patient stay.

    Have you tried a nerve block or an SPG block?
    On the more natural side of things, have ever done yoga or walking to build up some strength? I also try to meditate, although I’ve never mastered it. These are all things that I do or have done.

    Jefferson is very cutting edge and may want to try other things before going in-patient, but if you’ve documented all the meds and treatments you’ve tried you may get in quickly.

    Let us know if you go or if you have any other questions.

    -Katie

  • CH
    4 years ago

    Katie,
    Can you tell me whether Jefferson emphasizes and teaches biofeedback at their in-patient “headache camp?” Also, other treatments such as accupuncture, massage, etc? Based on my research so far, Jefferson in-patient seems to focus mostly on various “medicine” treatments as opposed to some of these other treatments. I’m comparing it to Diamond, where in-patient appears to have more of these “non-medicine” treatments. Thanks – – CH

  • Emilie
    4 years ago

    Katie,
    Thank you so much for writing about your experience. It is so helpful to have an idea of what to expect. I just had my initial consult at the Jefferson Headache Center this past week and am scheduled to come back for an inpatient stay in about a month to receive IV lidocaine. I did have a couple questions. I was wondering if anyone could let me know what I should bring, anything that you wished you had brought with you and didn’t or things that you brought and didn’t need. Also, is it better to have someone with you all the time, or is it better to just have someone there part of the time or not at all so you can really rest? What are the groups like? Is it a group therapy type of thing? My final question, which I know is kind of stupid, what is the food like? Do you have options or do they just bring you the typical hospital slop? Thank you so much for sharing your story, it’s so beneficial to hear from someone that’s already walked down this road.
    -Emilie

  • CML13
    4 years ago

    Katie, thank you so much for your excellent description! I am currently there now, and your story greatly helped me in what to expect, bring with me, etc. I would like to add some updates for those who are going for the first time.
    I was extremely disappointed to find out that the headache patients are no longer segregated in their own wing, we are mixed in with various other patients. What does that mean? It means we are surrounded with noise, some of which is loud.For example, I have a woman who screams all night long directly across from my room, and she happens to be screaming right now. Several other patients are hard of hearing, and have their televisions on maximum volume 24/7. I close my door, but I can still hear a lot of it.There are no empty rooms for me to move to, so I have to put up with it. The other headache patients I met at our classes told me they have the same problem.The nurses can give you little foam earplugs, but they are very uncomfortable. I strongly advise anyone coming here to bring a different type of earplug or noise canceling headphones in case they are needed.
    I am not sure if Katie or the others experienced this, or if it is just my body, but the drugs are extremely constipating and also dry out your lips and mouth really bad. The doctors automatically prescribe Colace (sp)?, so they must know this. I had to ask for Miralax, but the nurses kept delaying me, so if you anticipate this problem, I would advise to bring your own laxative/stool softener. Also bring lip balm and maybe Biotene for your dry lips and mouth.
    Camp is extremely boring, so bring plenty of activities for yourself. I brought my Nook e-reader and my laptop for e-mail and movies, but I wish I had brought some other activities as well. Also bring an extention cord to charge all your devices, as the plug may not be in a good spot for you.(mine is behind the bed). I brought an extention cord, and am very glad I did.
    Food: The food is pretty bad, and there are very few healthy options. I normally eat healthy foods at home, and am unable to here. They do have oranges, bananas and apples, as well as a green salad, but that’s about it. I am a vegetarian, and the choices are EXTREMELY limited. They have grilled cheese, Gardenburgers, and occasional pasta for vegetarians, but that gets old. The non-vegetarian options are unhealthy as well, and consist of all processed foods. When I had my knee replaced at a different hospital, there were plenty of healthy, as well as vegetarian options, so I expected it here. You may want to bring some healthy snacks with you.
    The nurses and aides are wonderful, and I have yet to meet a crabby one. They are overworked and understaffed though, and sometimes it takes a while for one to get to you. The reason you will need one is that the pumps for the iv are all computerized, and extremely sensitive, and have the tendency for the alarm to go off several times a day.If you watch them carefully, you will learn how to fix it yourself.
    I am being treated extremely well here, and hope it helps, as I have exhausted many options.
    If anyone has any questions, I will try to answer them. Best of luck to everyone in their quest for a less painful life.

  • Judee Dee
    5 years ago

    Dear Katie and fellow campers:
    I am scheduled to go to Jefferson Methodist Hospital in about 2 weeks for migraine treatment (aka headache camp). This will be my first, and hopefully only, stay. Although it looks like many folks have had only temporary relief and have had to go back. That’s a little disappointing, but I know each person’s outcome is different. I am going with an open mind and with the attitude that this is THE thing that will help ease my pain. I have tried EVERYTHING, like Katie has said.
    I have a few questions that haven’t been answered on this thread – Should I take novels to read? Or am I going to feel too puny to read anything other than a magazine? I tend to get cold
    easily, so is a sweater going to be a problem with the picc line? Is the psychiatrist or psychologist that visits you a provider that participates with common insurance companies? The one I saw at the Headache Center, central Philly, was not. I am very concerned about out of pocket expenses, and this is already an expensive trip for me to make from Virginia. I know every insurance company differs but if anyone could give me a heads up on costs, or give me an idea on troubleshooting insurance snaffus, I would really appreciate it. I love all of the stories here, and knowing that I am not alone is a great help. Keep up the good work!

  • Katie M. Golden moderator author
    5 years ago

    Hey Jamie!
    Thanks for your comments. I’ve already got the Miles for Migraine walk on my calendar! Maybe I’ll see you there!

    I’m glad you’ve had a positive experience at Jefferson. They can’t be expected to have all the answers, but I at least feel like they listen to me, offer cutting edge treatments, and don’t give up. Finding doctors like that can be extremely difficult and once you find one, you want to spread the news!

    Here’s hoping you have a Migraine free day!
    -Katie

  • Ryan
    5 years ago

    Katie,
    Yours was a well written story. I have done bids at Jefferson and Michigan Headpain. In Michigan, I had the same experience of finally being relieved (reacted really well to IV DHE) and having it come back 2 days later. They did a nerve block after that (dubbed the “block party” by my friends on the unit since we all went at the same time). My recovery from the block party was especially bad. I was there for 13 days and left because I could not stand being there anymore despite somewhat worse head pain. About 9 months after that I went to Jefferson. I found Jefferson to be more of a traditional “hospital” experience. Basically they just pumped me full of drugs. There was very little patient interaction and I was not allowed outside. Both times I did impatient I felt worse or the same leaving but after a few days resting at home I was better overall for a time. After Jefferson I started working full time again for two years. Now I am back to daily high pain levels and thinking about another trip to camp. I’ve been working with Dr. Ailani at Georgetown Hospital. She was my resident at Jefferson and has opened up a shop in DC. They offer inpatient and I’m in DC so it makes sense. If I were going to travel to camp again, I’d probably go with Michigan Headpain over Jefferson because I made solid friends with a lot of the patients. We keep in touch even after 6 years. I wish you luck in your battle and to anyone else reading this who is struggling. The answer is out there, we have to keep fighting for it.

  • Katie M. Golden moderator author
    5 years ago

    Ryan,
    Thanks for sharing your story. Actually Dr. Ailani is my Headache Specialist too. I live in DC and have been seeing her for 3 years. Last year she referred me to Jefferson (since she did her residency there). I’ve done inpatient there twice now with some improvement. I see her on a regular basis and travel to Jefferson on an as needed basis. She is in constant contact with Dr. Young in Philly and they kind of co-manage my treatment plan. It’s worked out well for me so far.

    It was interesting to hear your experience at Michigan. I’ll definitely look into it.

    I agree with you that you have to keep trying, the answer is out there somewhere!

  • Katie M. Golden moderator author
    5 years ago

    I wanted to update everyone now that I’ve been back from my second trip to Headache Camp at Jefferson. I was there for 6 days. I’m still a little loopy and adjusting to the new meds I’m on. I plan on writing a more detailed article about my experience. Overall, this time was dramatically different in a positive way. Honestly I felt the drugs used this time were less toxic (if that’s possible). I still had hallucinations, but they were calm and inviting unlike the Lidocaine fueled nightmares I had before. I’ve been at an average pain level of 2-3 with some spikes at night time, but I have meds that are working effectively to bring the pain levels back down quickly. I’m still cautiously optimistic as it’s only been 5 days since I’ve been home and I just hope that I can maintain the headaches at these levels. Only time will tell.

  • Lex
    5 years ago

    Does anyone know a website where I can find information on this Headache Camp? I’ve looked on the Jefferson website and can’t find much. It’d be greatly appreciated if someone could help me out.

  • Katie M. Golden moderator author
    5 years ago

    Lex,
    Unfortunately, there really isn’t much information on their inpatient program online. The link below describes the different services offered by the Center (which you may have already found). Within that page there are other links within the Headache Center to check out (About the Center, New Patients, etc).

    http://www.jefferson.edu/jmc/departments/neurology/programs/headache/services.html

    My doctor told me about the Center because she had done her residency there and she was able to give me details. Other than that, I was only able to find info about it on the internet from blogs and message boards like this from patients who had gone through the experience.

  • StephHarville
    5 years ago

    I love the perspective you share, and have had similar experiences with the Diamond Headache Clinic in Chicago and Michigan Head Pain and Neuro Institute (MHNI) in Ann Arbor, MI. Inpatient at both multiple times and would never recommend or do it again. At Diamond you are isolated in a private room with IV infusion therapy to break rebound cycles and attempt to prescribe new meds. I was a patient for 2 years and went back to the clinic, every 2 months for check ups. They just threw med after med at me, I was a zombie.
    At MHNI I had to spend 10 days in a hotel waiting for a bed and then was in patient for 18 days and then 14 days two months later because the TEAM (and I mean team, you go into a board room each morning to report your progress to docs to have your treatment plan reviewed and modified. There was no magic potion, nothing that hadn’t been tried before. ONLY positive was the connections I made with other migraine sufferers that I am still in contact with today. My opinion is save your time and money in exploring these options. Invest your time and energy in finding a good reliable local Neuro.

  • Katie M. Golden moderator author
    5 years ago

    Steph, sounds like your experience at Diamond was exhausting at best. The idea of going into a board room to report your progress is intimidating. There were days I had so many meds in me that I didn’t know what day it was, so having to convey your progress, or lack thereof, to a room full of doctors sounds awful. At Jefferson, I had daily conversations in my room with the head of the department and residents in a casual way. I always felt like they listened to me and also took my non-verbal cues about how I was responding to the infusions.

    Another thing you mentioned was that you waited in a hotel for days on end for a bed to open up. I too had to travel to get into the program, but it was scheduled weeks in advance when they knew a bed would be open so I never had to spend the money to wait in hotel nearby.

    I’m so sorry your experience was so bad. And I’m definitely not pushing Jefferson, I just wanted to share how my experience differed in a positive way from what you shared.

  • Vicki
    5 years ago

    You write a good story! And always, it’s good to hear something from another migraineur.

    Very interesting about the Lidocaine!

  • Danielle E.
    5 years ago

    There is a very similar “camp” in Michigan. I started going to the Michigan Head Pain and Neurological Institute (MHNI) in Ann Arbor, MI three years ago. (I was currently living in DC at the time.) They have a in-stay hospitalization program that sounds exactly like Jefferson’s. Whole person treatment, psych evaluations, educational classes, the works before even being admitted. Then once your admitted, your pumped with medication after medication and nerve block after nerve block and other procedures and tests as necessary. There are classes and therapy during the day and evening, etc. The first time I was hospitalized was in November of 2011. I was there for two and a half weeks. Unfortunately, I didn’t receive any relief. In fact, I returned to DC while coming off of a nerve block that left me with a horrific rebound migraine. My boyfriend was beside himself. I followed up every three months after that until I was hospitalized again in April of 2013. Another two weeks with more medication than one can imagine. Unfortunately, I’m a tough cookie to crack too. Nothing seems to work. Although, I wouldn’t agree to stay a third time, I will say that meeting other chronic migraineurs who are in the same situation as you was probably the best part of both of my stays. They are truly the only people who can actually understand what you’re going through.

  • Katie M. Golden moderator author
    5 years ago

    Danielle,
    Sounds like you and Steph both had a positive experience in meeting other Migraineurs while at Diamond, but that was the extend of making progress on managing your headaches. With my first visit, I too felt that a nerve block gave me the boost I needed to get me on the road to recovery, but then I quickly came down from the high days later and it was awful. There’s nothing more demoralizing than having your hopes crashed so quickly after you’ve invested so much time and money into a new treatment.
    I hope you find something soon that helps.

  • StephHarville
    5 years ago

    Agree 100% with your experience at MHNI.

  • valeriefago
    5 years ago

    I was just discharged from Headache Camp last week. I had a PICC line placed (didn’t enjoy that experience at all). They use a PICC line vs a regular IV because the Lidocaine is very caustic and so is Phenergan and DHE. I arrived at a level 9. I’ve had chronic migraines for yearsssssssssss. They started the Lidocaine almost immediately. I got all my regular medication plus methadone 5mg because I had been taking narcotics at home. The next morning I started hallucinating. I was placing invisible bowls on my laptop, seeing people and weird shapes. They backed off the dose by half a milligram. The lidocaine had brought my head pain level to about a 7/8. They decided they were going to add DHE which also requires Phenergan (I’ve been known to projectile vomit on DHE even with Reglan or Zofran) and Benadryl. The day after they added all that, the then added IV Ibuprofen and IV magnesium. Every 8 hours that cycle would be repeated. The Lidocaine was a constant flow 24 hours a day. My heart was being monitored 24/7 via telemetry and nightly EKGs. They continued to bump up the dose on the lidocaine and DHE until they took my BP and it was a lowly 70/43. I had no symptoms of having low BP but they had to back off the dosages they were using and bombard my body with a bag of saline. It took 2 days for my BP to recover. I was also getting heparin injections in my belly every 8 hours. I hate them!! My stomach is still black and blue and I have all sorts of lumps in my belly where it was injected. I’m still wearing elastic waisted pants!

    I only attended one of the classes. I couldn’t stay awake long enough to go to class. I probably slept 18 hours a day. I woke up for meals and would watch tv until I was asleep again. I didn’t even have the strength to get on Facebook and that’s saying something because I’m on it every day. On occasion I would grab my trusty pal, the IV pole and go for a walk up the hall. I was lucky enough to get stuck down there for the massive snow storm that left 15 inches on the ground. I was to be discharged on Tuesday morning but I couldn’t because there was no way into the city for my husband to get me. I got an extra day of meds.

    I left the hospital with a pain level of 1. Several times towards the end of the week I was completely pain free. I’ve been home 9 days. They sent me home on the pill form of Lidocaine and DHE that I have to inject myself if need be. The first few days I was home I was a mess. I was anxious, jittery, shaky, emotional, feeling like I was going to end up in the funny farm. It was BAD!! I took so many Ativan just to be able to function. Those feelings lessened at about day 3 being home and have since cleared. I’ve had one major 8/9 headache that was different from any headache I’ve had. I called Jefferson and they told me to go to the ER, get treated with meds and get a CT scan. The scan was negative, thank goodness. The ER gave me IV Benadryl, Zofran, Dilaudid and fluid. Head pain went away and I’ve only been to a level 4 since. I’ve had sinus and tension headaches but those even seem to be more manageable since my admission.

    Just a side note, I have both chronic migraine and Idiopathic Intracranial Hypertension. For those of you who aren’t familiar with IIH, I’ll give you a quick break down. To break it down: idiopathic (cause unknown) intracranial (inside the cranium) hypertension (high pressure). What’s happening is my Cerebral Spinal Fluid (CSF)doesn’t drain yet my body keeps producing it. It’s considered to be a rare disease; only 1 in 100,000 people are diagnosed with it. One’s vision can decline quite rapidly due to the pressure of the fluid on the optic nerve. It can be managed by diuretics, shunts or stents or repeat lumbar punctures to check pressure and to also drain some excess fluid out. I had a lumbar puncture while I was in. I will say that the procedure was the worst thing that happened to me while I was in Jefferson. The physician doing it kept hitting a nerve sending excruciating pain into my right hip and down my leg. By the eighth stick, she finally got it. I lost count how many times I screamed at her. I have a lot of scar tissue in that area due to previous taps. Once she got it, she learned that my pressure was only 9. That’s a far cry from the 38 it was in September when I was diagnosed with this lovely disease (average pressure should be around 10-18).

    I get to follow up next week and hopefully they will clear me to go back to work. I miss counting bodies and listening to some of the dumbest stuff one will ever hear (I’m a corrections officer)! Its a mentally and emotionally draining job. It highly stressful even on a good day but I love it.

    I hope that my story will help someone out. Everyone responds to treatments differently. Katie, I was really excited to see your post on here about Jefferson. Keep us all posted please. Did you see where the FDA has cleared a magnet type device to stop a migraine with aura?

  • Katie M. Golden moderator author
    5 years ago

    Valerie,
    Thanks for sharing your Headache Camp story!
    We must have matching black and blue stomachs right now from the heprin shots- not pretty and it takes a long time to go away. I also had a rough time when I came home with the Lidocaine pill form (mexilitene). I can deal with a lot of side effects but not sleeping and being jittery and feeling like my skin is crawling is what I hate more than having a Migraine. I eventually had to come off it.

    It sounds like you’ve stabilized at a pain level of 4. That can seriously be life-changing if it can be maintained. Don’t rush too quickly back to work. I completely understand wanting to go back to your normal life, but it could take a while for your body to even-out. I’m sure your doc will help you with the decision, but also listen to your body.

    You also mentioned a magnet device to stop Migraines. In Dec, the FDA approved the Transcranial Magnetic Stimulator to help Migraine patients. Here’s some more information on the topic:

    http://migraine.com/blog/fda-approves-first-device-to-relieve-migraine-pain/

    My best wishes to you!

  • Krista
    5 years ago

    Thanks for sharing. I’ve never done inpatient but have done intensive outpatient (with the brutal iv meds amongst other treatments) twice. I’m glad it helped you some. Each time I’ve done it, it has helped a lot, but was brutal though not near as brutal as yours. I wish this treatment was more affordable and more widely available. Good luck with your second round!

  • Barb
    5 years ago

    This story sounds so familiar..I went to Jefferson about 6 years ago with similar results. I felt like I was a dartboard the 3 months I was there. I don’t have much faith in them-all migraines are so different. I was inpatient for only 3 days-not sure why I didn’t do a full “camp”? I left without a headache and woke up the next day like before..so discouraging. And I was so hopeful because it is close to where I live

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