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Michigan Head Pain and Neurological Institute / Chelsea Inpatient Program

  • By Chris Hicks

    At the end of the week I begin the next steps in the quest to better control chronic migraine. I am hopeful that this will result in the improvement that I so desperately need.

    Today I go, at my local hospital, to get an updated MRI of the head as well as an MRI of the neck. These are required prior to admission into the inpatient program. With the images from these studies in-hand I head down to Ann Arbor on Friday for an outpatient visit with my former neurologist (also a prerequisite for the inpatient program). The final piece, clinically, that I must satisfy is an outpatient visit with one of the psychologists at MHNI.

    The tentative plan is to enter the inpatient program this Sunday, after my outpatient visit (they do not admit on Friday’s). If there is any issue with my insurance the admission may be Monday of next week.

    This means that I will have Friday afternoon, Saturday all day and possibly Sunday all day in Ann Arbor. From my home to Ann Arbor is approximately a four hour drive. I have decided to stay in Ann Arbor after my outpatient visit until the time of my admission. To drive four hours there, four hours back and four hours back down just seems like too much driving.

    So, I will be in Ann Arbor for the weekend, with part of that hopefully spent being admitted into the program.

    Lots of stuff is running through my head as things move forward. Of course, front and center is the sincere hope that Dr. Saper and his team can find effective treatments that both better manage my migraines while in the hospital as well as post-hospitalization! A close second has been concern over time away from work. The amount of paid time off (PTO) I have available is quite low, because of time off due to migraine. I just have not been able to build up a bank of PTO. As I look at the 5 to 7 day inptaient program I am definitely concerned about PTO. I cannot really afford to take unpaid time off from work. My employer, thankfully, seems to be willing to work with me to overcome this potential issue!

    Another competing message is the idea that by going into such a program I have somehow lost to the migraines, or that I have lost control (which I never had to begin with). My raional mind knows this is simply “garbage”, yet it keeps popping back up in my thoughts. It seems I am having a bit of push-back as I process the new idea that I cannot effectively manage the migraines, work, family… life! The right answer is to pursue treatment that might be effective. The garbage answer is that I am stepping onto a muddy hill on which I might just slide “down farther”. Again, I know how silly such thoughts sound even as they continue to move through my awareness.

    My intention is to write about my experience in Dr. Saper’s inpatient program. I want to share my experience so that others can get a glimpse into the program.

    In the interim, this week, I am working on a list of questions, ideas, possible treatments, etc. that I can discuss with Dr. Saper and the team.

    This is an exciting step that I hope will result in some much needed relief and more effective relief from the curse of chronic migraine!!!

    Stay tuned!!!

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  • By Ellen Schnakenberg

    Chris – This isn’t you losing to your Migraine, this is you taking the proverbial tiger by the tail and fighting back! May of us as patients tend to feel victimized… that this happened to us, that our lives have been taken away from us. It’s rare that we get an opportunity to fight back in such a tangible way.

    I am wishing you all the luck in my heart that this will lead to better things for you. Remember it’s a process though. You didn’t get this way overnight, so don’t expect to get better overnight either. But to find another step to take forward in a positive direction is – for me – the very definition of SUCCESS over the beastie!!

    ~Ellen

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  • By Chris Hicks

    An update…

    Well, I have reached my last day at work for the week. This afternoon I drive to Chelsea Michigan, as soon I finish in the office. My outpatient appointments with my “old” neurologist and the psychologist at MHNI are tomorrow at 8a and 2p. With those two appointments I have the three prerequisites for inptatient admission new MRIs of brain & neck and outpatient visits with neuro and psych. If things go as planned I will enter the inpatient program on Sunday.

    As I get moving into my work day I am simply not “here” mentally. I keep drifting to thoughts of what is to come. I am keeping my hope at a minimal and guarded level. I have, in the past, been completely enthusiastic and hopeful about new treatments. When those treatments fail or are less than successful I always seem to fall into a dark hole. With this next step, this inpatient program, I do not want to fall into that same dark hole. So, if things turn out well I will be SUPER excited! If things do not turn out so well I will not fall because I did not set myself up. This might seem a bit dark, but it is a coping mechanism (maybe not the best one).

    I am also actively researching neurostimulator implants as a backup plan. It helps me to have at least two things on my list and this is my second. I am early on in the process of thorough research. Of course the clinics/physicians that perform these procedures have wonderful, glowing things to say about it. I am, however, not swayed by their perspective. I need to look for more information and do more digging into the data. I am also searching for something closer to my home (Michigan) than Houston Texas. I know there are at least a few clinics around the country that work with these stimulators and I would like to find something closer. I am definitely looking for the occipital/supraorbital combination. My research will continue as I move into and through the inpatient program.

    Between the inpatient program and the research on neurostimulators I have some positive points on which to focus. This alone is helpful.

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  • By Chris Hicks

    Update: I had my outpatient visit on Friday. Everything seemed to go well. I was told that the team had to prepare some material/documentation and submit to my insurance carrier, BlueCross, for approval. I was not given any indication that there were expected issues. Admission either Sunday or Monday.

    Monday I am told that I have been denied by insurance. Now the physician is presenting an outpatient 4 day IV infusion program as an option. I would go for IV infusion 8 hours a day for four consecutive days. I would need someone to drive me and stay with me in the evening/night hours at the hotel to make sure I have no significant reactions to the meds.

    So, I stay in a hotel over this past weekend, which adds up quickly and now I not only have to do that again, but my wife has to take a week off of work to be my designated driver and monitor.

    I wish that the team down there had, as I would think they know the critiera from the insurance payers, mentioned this possibility to me on Friday so I could simply go home (4 hour drive for me).

    Finding out “at the last minute” yesterday was extremely frustrating. They had all my information. They knew all the answers to the clinical questions. Couldn’t someone have seen this denial coming?

    Poorly managed expectations. I was told I was going inpatient. This was always the plan with absolutley no mention of anything else until Monday mid-day.

    At this point I am glad to have a plan but am still hugely disappointed, angry and frustrated.

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  • By Ellen Schnakenberg

    Chris, I’m so sorry. At least they told you. I had a circumstance where we were *ahem* misled and told a surgical procedure was covered, lock stock and barrel, only to receive a bill for many thousands later. We were told the hospital was covered, but not the doctors.

    I know it hurts to have been treated this way, but be thankful you didn’t have to foot that bill.

    We have unfortunately learned how to play the game. The game means that we never believe what we’re told as we’ve caught them in too many lies errrrr mistakes. We speak with a manager to be sure until we know how to roll with whatever the procedure is. We call ahead of time and then call a day or two ahead to be sure we’re still all go. If things haven’t been okayed by that point, then we ask that they be approved before we leave. So far we’ve not had issues with staff not wanting to be helpful. In our experience, it is usually the insurance company playing games with us.

    Hang in there…

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  • By Chris Hicks

    Ellen,

    Thank you for your response. You are absolutely correct in that it could have been worse. Getting a LARGE hospital bill would be bad right about now. Things are pretty tight for us financially. So, despite the lack of communication during my appointment and leading up to the “false start” at least I am not walking away with a large bill.

    You are also right about the insurance companies. My neurologist, near home, and my old neurologist at MHNI both agreed that I would benefit from the inpatient program, as did the clinical team at MHNI (during their weekly clinical review last week). In this case it was completely the insurance company, Blue Cross and Blue Shield of Michigan, that stopped things. In my discussion with the neurologist on Monday it was clear that he was pretty frustrated with being pushed into a different direction by the insurance company’s decision.

    One thing I have learned along this journey, in part thanks to the migraine, is that no matter how frustrating, there is little sense in fighting about the things that are outside of one’s control. At this point, changing the course around the inpatient admission is out of my control. This is not to say that I could not work toward that goal, it just is not going to happen this week, or next. When I completely step back, in an objective way, I can see the logic in pursuing the IV infusion program first. It is a logical next step and something I have not yet tried.

    Speaking of this program I wonder if anyone has had experience with something similar? This is a four day (consecutive) outpatient IV infusion program where one spends five to eight hours each day on infusion. If they follow something similar to the plan going into the inpatient program I suspect the initial course may include DHE and Toradol. Beyond that I am not sure what to expect. The goal is to break the cycle of non-stop migraine and set up me up for a better outpatient, at home, management program. I would be most interested to hear the experience of others with similar programs.

    As always, a big “Thank You!” to everyone in this community! It is so helpful to be part of this community!!

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  • By merrie

    Hi Chris,
    Sorry to hear the inpatient thing didn’t work out. Hopefully the iv infusions will help. I will be thinking of you, and eating for you.
    Merrie

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  • By Chris Hicks

    A long overdue update…

    I successfully made it through the four-day outpatient IV infusion program at Chelsea Community Hospital in Chelsea Michigan (Dr. Saper’s program). The medications used were nothing surprising or “cutting edge”. DHE, Toradol, Benadryl, Magnesium in a variety of strengths and combinations.

    The result was that the intensity dropped by more than 50%, which is good because I had been running at the top of the charts, daily, for quite some time. The frequency did not, and has not, dropped.

    I intensity has remained lower since I left the program in late September. The intensity of the migraines has crept up a bit but remains lower than prior to the program. I am bouncing around the middle to above middle of the pain scale rather than top of the charts. Some days I go all day with nothing more than what I would call a “minor” migraine. Given the length of time I have dealt with these things I have developed the ability to function in a state of low to mid-grade pain.

    I would love to move these even further out of my life, but for now I will take this tremendous improvement!

    I go back for an outpatient visit with my old neurologist at the Michigan Head Pain and Neurological Institute, in Ann Arbor, later this month. I am sure we will be evaluating the outpatient medication plan at that time. We may end up adding more preventatives. Right now, coming out of the IV program I am taking Methergine and Magnesium as preventatives with injectible DHE, Vistaril and Baclofen as abortives.

    I am also watching my blood pressures as they have been running a little high before the DHE and Methergine. Since those can make B/P go up I have been advised to keep a log of my B/P with three readings throughout the day. I may end up with an antihypertensive added to the abortives. I have tried these in the past, but perhaps in my better state, something like this could supplement the improvements I have seen in the last few weeks.

    I am also still on track to continue the Botox injections for chronic migraine. My insurance has confirmed that the original approval is good for 12 months and that the IV program does not impact that approval in any way. So, in the middle of November I go for my 4th round of Botox injections. Again, I am hopeful that with the horrible cycle broken there may be some additional relief post-injections.

    All-in-all I would definitely say that the outpatient IV infusion program was helpful and worth doing.

    I continue my quest to find further relief from chronic migraine.

    Thanks to everyone here who provided support!

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  • By Ellen Schnakenberg

    Chris – I’m so glad you’ve found some relief. We didn’t get this way overnight, and it’s going to take a while for us to get better. Still, every single baby step is headed in the right direction. It’s progress. You can do this – hang in there!

    ~Ellen

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  • By Nancy Harris Bonk Moderator

    Hey Chris!

    I’ve been waiting for an update from you, thanks for sharing it with us.

    Baby steps – as Ellen said this doesn’t happen overnight. Thinking in terms of baby steps can be helpful. You’ve come so far with a 50% reduction in intensity – that’s amazing!

    I’ll be keeping my fingers crossed for you!

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  • By PLR

    Would love an update. I am heading to MHNI with my 16 year old son on 12/1 in hopes on inpatient admission. We have BCBS of Western New York and I believe we have as much chance of getting rejected for inpatient as you did. Hope not!

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  • By Chris Hicks

    An update… Well, as you have read I originally thought I was headed for the inpatient program. Because I did not meet the criteria established by my medicla insurance I was denied. The good news is that I did make it into the outpatient IV Infusion program, also ran by Dr. Saper at Chelsea Memorial.

    That program, a four-day course, involves IV therapy each day for five to eight hours. As an outpatient program, the patient leaves the hospital each afternoon and returns the following morning.

    I finished that program in late September. The migraines have dropped off in intensity. Originally, just out of the program, the drop was half. Over time the intensity seems to be slowly edging back up a bit. The frequency, however, remains daily at this point. Honestly, a drop of 30 to 50% in intensity is a wonderful thing! I would love some days free of migraine, but I will take what I can get with this decreased intensity!

    Coming out of the program my oral medication program was completely redesigned, based in part of some of the IV medications I received during the program. This new medicaiton program seems to be keeping things much more in control than before the program.

    I am also continuing Botox injections with my neurologist in Traverse City Michigan. She works MHNI to coordinate with their care program. I spoke with my neurologist at MHNI during a follow up appointment and he was supportive of continuing the Botox. I go for my 4th round of injections next week.

    I am hopeful that I will find an even more pronounced decrease in intensity as well as a decrease in frequency once this next round of Botox begins to take effect. For me, that seems to be about three weeks after the injections.

    I am definitely improved from where I was three or four months ago. I see a lot of room for further improvement and hope to continue in that direction. For now, I grateful that something broke the horrible cycle I had been stuck in for so long!

    I hope your son does get into the inpatient program. I have heard great things about it! If not, rest assured that there are other options that can provide real meaningful improvement!!!

    Take Care,
    Chris

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  • By Nancy Harris Bonk Moderator

    Hi Chris,

    Thank you so much for the update! I’ve been thinking about you and wondering how you were doing.

    Many times our improvement is measured in baby steps and I’m happy to see you are heading in the right direction. I’m sure you are aware that we may always need to be vigilant about our migraine triggers, frustrating but mandatory for people with migraine.

    Please keep us posted on your progress, good news is always welcome!!

    Nancy

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  • By Nancy Harris Bonk Moderator

    Hi plricotta,

    Do let us know how your son’s visit at MHNI goes. A member of my migraine and headache disorder support group (the WNY Migraine and Headache Disorder Support Group) has been there and speaks very highly of it. Dr. Saper’s experience is vast, he has seen just about everything!

    Good luck to you and your son,
    Nancy

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  • By PLR

    My 16 year old son spent 9 nights inpatient, 12/5-12/14/13. We both have nothing but glowing reviews about the program in general. He had his outpatient visit at MHNI on Monday 12/2, and was admitted on Thursday 12/5, after we waited for BCBS of Western New York approval. Our BCBS approved days incrementally; first 3, then up to 7, then the full 9. All insurance approval was handled by MHNI or Chelsea Hospital staff of Dr. Saper’s program.

    My son has had 24/7 pain for 2.5 years. Additionally, 3-4 migraines/week. He missed 76 days of school last year. Our local migraine specialist/neurologist told us he exhausted his options; our 2nd opinion MD at the Cleveland Clinic told us the same. Our local migraine specialist/neurologist recommended MHNI.

    MHNI uses a 0-5 pain scale which took some getting used to. He’s been functioning, sort of, at a 7/10 for 12 months or so now. He told Chelsea he was at a 3/5 when he entered. Tried to say 3.5, but they don’t work in 0.5 increments. He left at a 1/5, never reaching 0/5. He has remained at a 1/5 now for 4.5 days, with two spikes up to 2/5. One he used his first line abortive on, Klonopin and Naproxen together, and caught the migraine. The second spike he used Flexeril at bedtime, his 2nd line abortive.

    He had an IV in him from time of admission until 11pm on the night before departure. That seems to be typical of all inpatients. IV protocols are administered at 6am, 2pm, 10pm ish. Preventative meds are given at 8am, 4pm, 12am ish. Recommended abortives are available to try to test effectiveness. The meds given, and need for blocks or other procedures are patient dependent. My son seemed to be on a rather standard concoction: DHE ramped up to max dose; replaced by Methergine as an outpatient. DHE mixed with various meds to make cocktails that have been proven successful for at least some patients at Chelsea. Same with combinations of preventatives.

    All staff was professional and knowledgeable. Least senior nurse we encountered had 8 years experience in the head pain unit; some nurses 30+ years. Rounds are held daily, in a conference room, around 7-9am. Each patient is seen individually. Dr. Saper was at rounds each weekday, Mon-Fri, along with various other MDs, DOs, NPs, PAs, and/or nurses. Patient treatment is tweaked at rounds for the next 24 hours. An MD visits the patient rooms on weekends for rounds.

    Patients roll out of bed to rounds; no one is expected to dress for the occasion. Walks are suggested; there are coordinated walks with a recreational therapist 3 days/week. Crafts, Pain Meds discussion, Care of Neck discussion, visits by Therapy dogs, and religious personnel were available. A chapel is very near the head pain unit.

    There are several rooms with pull out sofas for a companion. I saw at least 5 individuals with family staying in their room. I chose the Holiday Inn Express in Chelsea. All patient rooms are private, designed with headache sufferers in mind. Low lighting, solid wood doors to hall way, etc. There is complimentary laundry and laundry products for the patients and families.

    Meals are available to the patient anytime they call Dining between 6:30-6:30. Patients have a menu equivalent to a small diner to choose from; call as often as you wish. My son ordered 2 bags of pretzels and milk one day for a snack and they were delivered in 5 minutes. Not the way meals are handled at hospitals around Buffalo.

    Parking is free at the hospital; Chelsea is a lovely small town. Home of the Purple Rose Theater, founded by Jeff Daniels, and headquarters to Jiffy Baking mixes.

    If you have chronic migraine pain, or some other migraine related problems that your local Migraine Specialist cannot address successfully, run, don’t walk to MHNI. They are so dedicated to improving the health of the patient. They have a wealth of knowledge. Dr. Saper has been doing this since 1978; you see him, as well as staff he is developing. Go, go, go.

    The 2 hotels in town, Holiday Inn Express and a Comfort Inn have hospital rates around $80.

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  • By Chris Hicks

    Hello to all reading this thread. It has been a while since I posted something. An update is long overdue.

    Although I never made it into the inpatient program I did go through the four-day outpatient IV Infusion program at Chelsea Community Hospital back in September. Initially there was a substantial improvement in intensity of my migraines, if not frequency. Since September, unfortunately, things seem to be sliding backward a bit. Intensity is slowing rising. The frequency never dropped below daily for me.
    I continue to work with Dr. Weintraub of MHNI on an outpatient basis, making adjustments to my preventative and abortive medications. I am also working with a neuro closer to home for Botox injections. This neuro is both certified for migraines and has a close relationship with MHNI.
    The truth of the matter is that I have begun to question whether or not I should continue the Botox. I received my 4th round in late November and have not seen any improvement in either frequency or intensity since that time. If anything, the intensity is going up, not down. At my last visit with Dr. Weintraub at MHNI, he was of the opinion that it did not make sense to continue the Botox. He left it, however, to me and my neuro in Traverse City (Bruining).
    Lately, with the increasing intensity, I find myself sinking into something of a depressed state. The all too familiar feelings of hopelessness are creeping in again. I have worked with Dr. Weintraub for nearly ten years now. We have gone through many, many, many medications. My chart at MHNI is several inches thick. I am fighting the negative voice that threatens to steal my hope.
    I must remind myself that, even with the backward “slide”, I am still in a better place than I was this past summer.
    The bottom line is that, as the years pass, my tolerance for these intrusive, life-stealing migraines seems to be growing smaller and smaller. Today is not a particularly good day.

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    • By Ellen Schnakenberg

      Chris Hicks,

      Hang in there. Have a frank conversation with your doctor re: the Botox and make a decision that is right for you. Some patients continue to improve thru 7 and 8 cycles. I too am holding on to that hope. My frequency didn’t fare any better than you, but my severity definitely got better. I still suffer daily, but have fewer of the horrible agonizing variety thankfully.

      As to hope, I know what you’re going through. I’m at that awful place right now myself. One reason I’ve not been as active here. My comorbid conditions have ramped up and my life is miserable right now. I am always the cheerful optimist who finds joy despite the pain. Not lately though.

      For me, I am trying hard to keep in mind that there are some truly amazing options that are being worked on for prevention right now, and they are so promising that I feel one of them may truly be my ticket out of misery. The key is in hanging on until they become available. This takes more than strength for me. It is willpower, which is also low at present. I get frustrated easily and anger has been creeping in more than ever before. Thankfully I have a supportive family and a lot of Migrainey friends who are there to lift me up when I become distraught. My mind wants to go to dark places, and it’s taking concerted efforts to keep it focused on good things. Especially in the winter when everything slows down and seems cold and dead. NOT a good thing for the chronically ill!

      What do you do for yourself to try to keep your mind positive?

      ~Ellen

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  • By Ellen Schnakenberg

    PaulaJan

    I’m so sorry you’ve had to suffer so much that you found you couldn’t stay employed. I hope your experience with the headache specialist will be better. Remember though that not all specialists are created equally, and it can be a bit of a challenge to find one that fits just right for you. Still, this is probably the best thing you could have done.

    The reality is, that it would take 25 years to try all preventives separately, and to try them in combination would be even longer. The good news, is that even now there are some preventives in the works that researchers are very excited about. I haven’t been this excited about the future of preventives in well… ever.

    You said you don’t tolerate triptans – what happens?

    Have you tried DHE? Other IV therapies including magnesium as an abortive?

    ~Ellen

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  • By Chris Hicks

    Ellen,

    Lately I do nothing to keep myself positive. I am keenly aware that the last few weeks I have settled into a deepening hole. I can initiate a rational voice that will speak to the possible effectiveness of new and varying doses of preventative medications.

    I definitely have little that I find joy in these days. Most of the time I feel like I am going through the motions. I struggle to make it to work every day and most days end up getting home feeling pretty bad.

    I know this is a warning sign. Honestly, not feeling too motivated to correct this course. The chronic, daily pain is sucking my energy from me.

    I suppose my heightened feelings of frusration and anger, most acutely today, could be a good sign. I have not fallen too deep to lose sight that this is NOT how my life is supposed to be…

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  • By Award00

    I’m looking for “the next step” for my teenage daughter. PLricotta — I’m wondering how your son is doing now after being at MHNI?

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  • By PLR

    Hello Awardoo! My son is still doing very well after discharge December 16. He has returned to school FT, and missed only 2 days since January 1, which is remarkable for him. I have called MHNI twice to tweak medications and their call nurse handled the problems in a timely fashion. The abortives my son has now work much better than triptans did for him; if he does get a migraine, mostly, he can get over it and return to life on that same day. He has not had a 3 – 5 day migraine which were so frequent the past 2-3 years since returning from MHNI. He has perhaps 3 – 4 breakthrough headaches each week, which are 90% controlled by his new abortives. We would recommend MHNI in a heartbeat. I don’t know your daughter’s situation, but if it similar to my son’s, please try there with her. I don’t believe you will have regrets.

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  • By Award00

    Thanks for sharing your experiences. My 13 year old daughter had her first ever migraine on 8/29/13 and it responded to various abortive drugs for only a short periods of time- a day here and there. Even a hospital stay with DHE infusion on,y lasted 24 hours. Ultimately, they put her on two preventatives and put her to bed. The migraine lasted until 10/21. After that she had a few good weeks then a migraine that lasted 10 days. They changed her preventative and again she was good for a few weeks. She got a migraine on 1/6/14 and it won’t break. They’ve changed her preventative again 2 1/2 weeks ago and she still has her migraine. We see the only ,pediatric migraine specialist in our state and he told us last time that we are running out of options. Seriously? And he said that in front of my daughter. Ugh. We’ve called the non pediatric migraine specialists in out state and they won’t see her. One agreed to give her a TMS machine to try but only on referral from our neurologist. He refused saying that he doesn’t know enough about its effects on children to be comfortable referring her. It’s so frustrating. We are trying to figure out where to go next and MHNi is in the running.

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  • By Nancy Harris Bonk Moderator

    Hi PaulaJan,

    It’s difficult when you put all your hopes into a treatment and then life gets in the way, I totally understand that.

    How are you doing with trigger management? This can be tricky because our triggers can change and new ones can crop us. If MSG is a problem for you, there are so many hidden sources of this, it’s rather scary. I don’t know if it is, but here is information in case you need it; https://migraine.com/blog/locate-hidden-msg-migraine-triggers/.

    Hope this help,
    Nancy

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  • By Jean

    I am 49 year old female with chronic migraines over the past 3 years after a motor vehicle accident which worsened my chronic neck pain/issues of the past 23 years. Had to have a cervical bone spur removed for pain, numbness, and weakness in my left thumb and forearm. It’s been 3 years and I still have the numbness and weakness and occasional pain. I was a full time pediatrician before all this but had to go on disability 2 years ago. I have seen a headache specialist in Virginia Beach, VA and a head and neck pain specialist in LA at Cedars-Sinai. In LA they did DHE, steroid injections in my neck then radiofrequency ablation of the facet nerves on the right side of my neck. Sent me hope on the ergotamine which didn’t do much. I went 12 days without a headache while I was there but on my 4th day back to work, the migraines returned and having used up all my FMLA, I went on disability. My headache specialist here didn’t think he had anything to offer except to refer my somewhere else for the neurostimulators. I wanted to at least look around some more before I did that so I switched to a neurologist/pain management/headache specialist here. He put me back on daily opiods and tried Ketamine injections with limited success. (I had already done 4 rounds of Botox with first doctor.) Have tried 4 antiseizure meds without success. I had a gastric sleeve to see if loosing weight would help – it did help me get off of my 2nd blood pressure med and my cholesterol med and hopefully my CPAP. I’m still not to my goal weight because I just can’t exercise at any normal frequency. My head is about a 6/10 right now despite Oxycontin and Dilaudid and Ketamine nasal spray (which usually will knock it down a few points). Trying the Cephaly TENS unit for the past 3 weeks. No change. Went back to LA last week and Graff-Radford (love him wish I could move to LA) wants me to go to MNHI so I am set up for 6/2 there. They have told me I would most likely be inpatient which I hope is true for many obvious reasons. Have done DHE inpatient here before – lasted 6 days. If I am not the poster child for Failed Outpatient Management, I don’t know what is. Graff-Radford said he could do everything I need but it would take at least 6 weeks outpatient and that means renting an apartment again and coordinating relatives/friends to be here to take me home after procedures which was not easy to do last time. I have BCBS of Virginia/Federal. My husband would probably come the first week but trying to decide if my sister should come the next week. If I end up outpatient up there (please God no), then I would definitely need her. So I have all this on top of me – got to get all the medical records and of course it’s time for more paperwork for the disability claim. No matter what happens in Michigan, I have made up my mind that I can no longer deal with the office and their policies at my current pain management dr. and I will go elsewhere when I return. I like him personally but his staff is mean and sucks – Monday I called about getting appointment to have him fill out disability form because I already knew they would make me come in for it ($$$). Had to leave message on nurse’s voice mail. Her message at that time said she would call back in 24 hours. So I called again today (48 hours) and left another message. Her voice mail now says she will return calls in 48 hours. Make up your mind! and then do it! It took me 2 weeks to get a prior authorization on a medication I was already on and had refills for. I can no longer stand their incompetence. If was had done this kind of crap at my old office, there would have been parents beating down the doors!

    So onto the emotional side. I see a psychiatrist and have for some time due to anxiety (and being sued for malpractice by a friend – unfounded). I am more depressed than ever. I feel like I have lost my self – I am no longer who I was. My husband is hanging in there. My teenage son just shakes his head when I can’t remember anything he tells me. I am letting them both down so much. I cry almost daily. I’m due to see my psych but I’ve missed appointments because of the migraines so she wants me to call on a day I wake up ok and she’ll fit me in – I haven’t woken up Ok in over 6 weeks. MHNI already said they would be changing everything up when I get there so I don’t know if its worth adding on another antidepressant. Abilify – couldn’t sleep. Seroquel – gaining weight back (urgh). But I do have to get her medical record and she has to fill out a form for the disability also.

    So I basically wanted to hear from anyone with experience with MHNI – in or outpatient.

    And any little words of encouragement would be appreciated. I lost all my friends at work and my whole identity. Luckily I have two very good old friends that are sticking with me no matter what. One of them has been my best friend since 3rd grade and luckily just moved back to town.

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    • By Katie M. Golden Moderator

      To Jean,
      I can sympathize with you. It’s been about 3 years since the Migraines became chronic. It turned my life upside down. I have not been to MHNI, but I’ve been to the Jefferson Headache Clinic in Philadelphia, very similar to MHNI. I have been hospitalized twice. They didn’t have the magic cure, but have helped me to manage the Migraines better. Not to a point where I can return to work, but to a point where I can function better. I wrote about my first experience here if you want to read it: https://migraine.com/blog/headache-camp/

      You seem to be at the point that I was when I went. I had tried about all the same things. I think it’s a worthwhile option for you to consider, but don’t put all your hopes into it. I try not to get too excited about any new treatment so that I don’t get let down if it doesn’t work, but that’s just me.

      Please let us know about your progress. You’ll get through this!
      -Katie

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  • By PLR

    This is for Jean, who posted 5/7/14. I am plricotta and have two posts in this link. My son has had a much better life since MHNI in Dec 2013. We would certainly recommend you go. I am a little apprehensive that you already seemed to have had DHE and ergotamines at home with little success. Perhaps the dosage is different that MHNI uses. My son had IV DHE 3 times per day, for 9 days. He went home on 20mg Methergine, 3 times per day. He also went home with a variety of other medications. In March, at his 3 month visit, he was raised to 20mg Methergine, 4 times per day. They did this because they did not like the number of breakthrough migraines he was having. Go, see what they can do for you. You are in a bad place, you have to see if they can help you.

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  • By migrainestl

    This question is for Chris Hicks & plricotta or anyone else who has been an inpatient at Chelsea/MHNI: from teading the above it seems that your experiences were w/ lots of IV drugs. I’ve read that MHNI has physical therapists, nutritionists, behavioral specialists on site–were there any accompanying therapies that helped you cope better once you were home? My local headache clinic does outpatient IV therapies which have been unsuccessful in my case. I don’t want to travel 9hrs one way to just have more drugs pumped into me that I could try here. Thanks in advance for your reply.

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  • By PLR

    To: migrainestl
    My son certainly had IV infusions at our local headache clinic when we couldn’t break a 3-5 day HA. They consisted of
    Toradol,Metochlopramide(Reglan),Valproate Sodium(Depacon),Magnesium Sulfate,Phenergan, and/or Methylprednisone

    Never once did any combination of these meds help break a migraine.

    MHNI used DHE IV 3 times/day for 9 days. It was used with other meds, both IV and oral, but the DHE drip was the most important part of his hospitalization. However it works, it definitely brought his chronic pain from a Michigan (1-5) level 4, down to a level 2 or even level 1, when we left. It brought new life to my son, and he continues to be ‘so much better’ than 1 year ago. He had never had complete relief since Michigan, as his chronic headache from May 2011 continues. But, he has a much better life, to the point where he got his driver’s license this summer, worked 16 hours a week, did not go to summer school, and played 4 hours of soccer each week. He is now in his Senior year of HS. As he lays in a dark bedroom this morning, he has a wicked migraine. Today, there is unsettled rainy, cloudy, sinus weather. It’s to be expected. But, life is much better after MHNI.

    Answering the part of your question, yes, attended 1 group Nutrition education meeting, attended 1 ‘coping with chronic pain’ education meeting, attended arts & crafts session Chelsea migraine inpatient clinic holds, and he walked the hospital halls with a Migraine employee and other patients to ‘get moving’. These meetings, etc. were every day or every other day, but I personally would not call them an integral part of relieving the HA, per se. Good Luck.

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  • By migrainestl

    Thank you plricotta! I’m so happy to hear your son is doing so well, I can’t imagine having these chronic migraines as a child. One more question, had he tried DHE before MHNI? Your IV experience locally sounds similiar to mine except I was also given DHE intravenously & orally. I must have tried it several times over a month and it didn’t work for me. I’m hoping to get biofeedback, cranial sacral therapy and maybe a sleep study while I’m there.

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  • By PLR

    To: migrainestl:
    No, my son never had DHE IV or orally, locally. MHNI was our first experience with it. We did wean him off all pain meds before he went, on our own, specifically Percocet, so he was ‘clean’ for about 5 days before entering. That allowed him a clean start at MHNI.

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    • By Nancy Harris Bonk Moderator

      Hi migrainestl,

      There are a number of patients I work with who have had great results at MHNI. Be prepared for some ‘tough love’ as in they may wean you off all meds and go from there. I can tell you a member of my local migraine/headache disorder support group went there and her experience there increased her quality of life tenfold!

      Keep us posted on how you make out,

      Nancy

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    • By Nancy Harris Bonk Moderator

      Hi migrainestl,

      There are a number of patients I work with who have had great results at MHNI. Be prepared for some ‘tough love’ as in they may wean you off all meds and go from there. I can tell you a member of my local migraine/headache disorder support group went there and her experience there increased her quality of life tenfold!

      Keep us posted on how you make out,

      Nancy

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  • By Monkeybrew

    I too have had experience with MHNI. I did not go into the inpatient unit, but went through their four day IV infusion program. That program consists solely of IV sessions three times daily for four days. No overnights in the hospital.

    The primary cocktail was Benadryl, Toradol, Magnesium and DHE. I went from daily 4’s and 5’s (on a one to five scale) to 1’s and 2’s by the end of the four days. This relief lasted for a couple of months before the migraines started to increase again in intensity. I never got a break in the frequency, which for me is daily.

    I continue to work with MHNI, now pursuing some deep nerve blocks as an outpatient. After three nerve blocks that each brought one to two days of a migraine-free state, the next step is to work with my insurance company to approve radio frequency nerve ablation.

    In all, I would say that the team at MHNI is both competent and most are compassionate.

    As things are starting to fall apart again I may be taking another go at the IV program or possibly the inpatient program. Unfortunately the insurance company has a lot to say about the course of treatment. If they will not approve something it is tough to proceed as the out-of-pocket costs are prohibitively high.

    The bottom line is that MHNI is a very good partner when working to manage migraines. I would encourage anyone to be an active participant in their treatment, wherever you go. Research, study and be vocal about what you need and the direction that you would to see treatment go. It has to be a partnership in order to be truly successful.

    MB

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  • By Monkeybrew

    Hello to the group. I am sitting in a bed in the MHNI inpatient program at Chelsea Community Hospital. After quite a bit of pushing The team at MHNI as well as my health insurance company have agreed that this inpatient program is the wasy to go.

    Over the last several months my daily migraines have risen in intensity to the point where I hit near or at the top of the pain scale every day. Now that inpatient is moving along (this is my second full day) I am hopeful that we will be able to both break this bad cycle and put together an outpatient program that is more effective.

    Later I go for a lumbar puncture to check the pressue of my cerbrospinal fluid. It sounds like pressure that is too low or too high can contribute to chronic migraine that is not responsive to medications.

    Beyond that, I know that I am tentatively lined up for bilateral cervical facet (C2 – C5) nerve blocks tomorrow.

    Additionally, I am getting DHE, intravenously, three times a day (as long as their supply lasts). My abortive program has been deconstructed and I am moving, much more quickly, through different abortives in an attepmt to find something that will be helpful. So far we have burned through Skelaxin, Thorazine (IM), Toradol (IM) and Keppra. Of these the only one that may have been helpful was the Toradol. I have tried all of these in the past except Skelaxin.

    In my opinion the best things about this program are the access to team members, including Dr. Saper, and the pace at which changes can be made to try and evaulate new and different combinations of medications.

    I expect to be here through this coming weekend and possible into next week. Of course, that all depends on how things progress over the next few days.

    I will post more updates.

    MB

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  • By Monkeybrew

    Hello again to the group. I just returned to my room here at Chelsea Community Hospital Head Pain Unit after receiving my lumbar puncture. My pressure was within normal ranges so that is, apparently not an issue. They did take 22 cc’s of fluid that was sent off to the lab for analysis. I am told that analysis should be completed tomorrow.

    My back is pretty sore from the procedure. I have a pain patch and am drinking some Coke, which is suppose to keep the “spinal tap headache” away.

    For the remainder of today we continue to trial abortives between my IV protocol medication (DHE). Tomorrow is still lined up to be the cervical facet nerve block day.

    So far so good. I am pleased with the aggressiveness and speed of the treatment so far. I am confident we will find the solution that can result in significant improvement.

    I would definitely recommend this program to those who have struggled with outpatient treatments that did not bring about real results.

    Take Care,
    MB

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    • By Katie M. Golden Moderator

      Monkeybrew,
      Thank you for the play by play. Trust me this will be very helpful to others who have questions in the future about what to expect at MHNI. Keep the updates coming as long as you feel well. Your optimistic attitude is going to really help you through this process!

      Wishing you the best!
      -Katie

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  • By PaulaJan

    I have been to Chelsea and found that the tools I came home with weren’t as effective here as they were there. I do have better news now, though, as I am getting Botox injections (have had three rounds as of Sept. 22nd), and I am managing better. Have about one migraine a week, and the daily pain I used to have is reduced a great deal. I am hoping I can return to part-time work soon.

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  • By Monkeybrew

    Hello once again to the group.

    I am posting another update as I continue in the inaptient program at Chelsea Community Hospital (MHNI’s inpatient program). As you know, if you read my previous posts, I was admitted Monday evening. As I write this it is Friday evening. So I have had four solid days in the program.

    Unfortunately my migraine is not responding as everyone would like it to respond. I just dropped from a 4, on the 1 to 5 scale, to a 3. That is progress, but given the discussion at morning rounds with Dr. Saper and team it is clear that the expectation was better response.

    One of the best things I have found about this setting is the speed at which we add and subtract abortives and IV protocol medications. I also have the fast track to nerve blocks in the surgical center here. In the past four days I have moved through enough medication changes and nerve blocks to last nine to twelve months in the outpatient setting (try something for six weeks then return for another visit… change med or dose and come back in six weeks… etc.).

    Although I was hopeful to be closer to my ultimate goal of a 50% reduction in intensity and a significant decrease in my daily frequency pattern I am still very optimistic. I know that team here, lead by Dr. Saper, will continue to analyze the situation and take the appropriate steps to find something to help.

    I did notice comments about patients doing better here, in the inpatient setting… a controled environment, only to revert back once they are back in their home and/or work environment. I certainly hope that is not case with me. I can say that the opposite has not yet happened, that is to say I have not seen a dramatic drop in migraine intensity or frequency while here in the inpatient setting. I guess I can confirm that I am not allergic to work or home. The migraine seems to find me regardless of my location.

    I certainly understand the experience of progress eroding once one goes back to routine day-to-day life. A year ago I went into the MHNI outpatient IV infusion program. I was able to attain greater than 50% reduction in intensity. A slight, but not significant, decrease in frequency was also achieved. Upone completion of the four day program I went back to my regular life/routine… home, work, etc. The progress lasted about three to four weeks. From there things seem to fall apart and move back toward the pre-treatment pattern.

    I am not planning on that happening again. I do know that the reality is I will continue to experience migraines. What I am working toward is the ability to keep them better managed at a level less than every day with most being 4 and 5 on the 1 to 5 scale of pain.

    Ah, but I digress from the topic. The nurses and other team members here in the inpatient program have been very helpful. They all seem quite experienced working with migraine and are very compassionate.

    I think the plan for me over this coming weekend is to continue to utilize my list of abortives (there are about ten now in that list). We need to refine the list so that only the most effective remain. I presume that from that shortenend list we will pull some of these medications to be a part of my outpatient toolbox.

    In addition to the medications I have also had a lumbar puncture to check the pressure of my cerbrospinal fluid, cervical facet nerve blocks (C2 through C5) and an occipital nerve block. The blocks were done on Thursday and the LP was done on Wednesday. So far the blocks have not had an impact on the migraine. It is a bit early to declare that they were not helpful. It is my understanding that the steroids take a bit to begin working. I am hoping tomorrow I will see a decrease in intensity and possibly frequency.

    Bottom line so far is that the staff are very compassionate and knowledgable. Medication changes are fast-tracked in contrast to the timelines in the outpatient setting. Being inpatient has providen helpful to get in for procedures, such as nerve blocks, within days rather than the weeks / month(s) one experiences in the outpatient setting.

    I will keep everyone updated as my journey continues. If anyone has any questions please feel free to post in a comment. I will try to keep up with this over the weekend. I think things are going to be a bit more quiet around here.

    MB

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  • By Monkeybrew

    In looking at my previous posts I cannot help but feel I have been a bit verbose. I will try to keep this update more concise.

    First, I should tell you I am still in the inpatient program. My migraine will not back down to my goal level of a 2 on a 1 to 5 scale. I continue bouncing around between 3 and 4, with some 5’s.

    This morning at rounds the team decided to make some significant changes to my protocols (IV meds). Orally, one medication was added. The result is that I spent two large chunks of the day sleeping. I wonder if it is the medication or my body finally giving up on expending energy to function while also experiencing the pain of migraine.

    I have put together several notes/questions for the team tomorrow during rounds. One of the most significant, in my opinion, is speaking with the physician who perforrms more superficial nerve blocks around the forehead, temples, sides of head, etc. The C2 root nerver bllock prior to admission here brought about very short windows of pain-free time (one to one and a half days). I I would love to find more points that are involved in the migraine process (points where, if blocked, the migraine process shuts down).

    Another path that has been mentioned more than once is radio frequency nerve ablation. This discussion, so far, has been specific to the C2 root nerve.

    In the interim I try to stay positive. Today, as I type this post, I have been in the inpatient program for one week. I cannot say that I have made much progress at all. In fact, at home I would likely have had at least a few hours sprinkled throughout the week where I was complete free of migraine pain. This past week on the unit I find that I have some level of pain (mostly 4 and 5) constantly.

    I know this will break. I just do not know when… I am very tired of the relentless pain. I know, however, that I am in the right place.

    One of the most important things I have identified is the need to be well educated around the medications and procedures as well as to read up on the medications. Finally, discussing thoughts, conerns and comments with the nursing staff can help to solidify one’s communication to the clinical team during morning rounds.

    That’s it for now. A short walk around the hospital to see how my migraine responds.

    MB

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  • By Katie M. Golden Moderator

    MonkeyBrew,
    When I was at the Jefferson Headache Clinic, I had days where my pain level decreased only to find the next day that it spiked up again. The doctors told me that is a common occurrence since they are constantly changing your meds. While it can be very frustrating and you feel like you’re going backwards, these changes in your pain will actually help the docs determine what works and in what dose. There are so many meds and combinations thereof that its almost impossible for them to get it right the first time.

    And I’m sure after a week, you are ready to go home. Just remember all it took to get there. Stay until you feel better for longer than 8 hours at a time. Stay until you feel like you can use what you learned and take it home. Be patient.
    -Katie
    Migraine.com Moderator

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  • By Monkeybrew

    Hello again to the group.

    I am scheduled for discharge tomorrow from the MHNI inpatient program here in Chelsea. I must admit I am a bit anxious as I sit here, typing this post, with a high #3 (1 to 5 scale). I have tried my best to keep active so as to test our the impact of the medications and procedures. I have taken walks, worked on devices with bright screens. Katie, you nailed it when you mentioned the fact that medications are constantly changing. On a daily basis there can be at least a couple of changes. This does not taken into account the procedures that are also performed while in the program (cervical facet, C2 root, lumbar puncture, etc.)

    The compassionate and knowledgable care of the team members, including the physicians, goes a long way toward the overall impact of the program.

    To PaulaJan I would say that this seems to be a life-long journey for many of us. In my case, with a discharge from the program tomorrow, I already have follow-up appointments with two of the team members scheduled for next week in MHNI’s outpatient clinic. This will allow me to fill them in on progress and events over the next week. I am confident that, if changes are warranted, changes in medications can be made during that appointment.

    What I am a bit unclear with is the path of radiofrequency nerve ablation. I had gone through three of the C2 root nerve blocks with an MHNI physician. The idea, I was told, was to “prove” to the insurance company that ablation should be approved because the nerve blocks brought about relief, even if only for a day to two days each time. This is a bit of a loose end.

    Of to another group on medications.

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    • By Katie M. Golden Moderator

      Monkeybrew,
      Congrats on getting out of MHNI. Please take it easy as you transition back into the real world.

      I have not had a nerve ablation because the nerve blocks didn’t help. I’ve heard from others who have had mixed results. For some it helps tremendously, others not at all and then many find that they do get some relief. So manage your expectations. But I’m sure that you are used to doing that by now. You can never count on one thing being the final cure. I bet that if the nerve ablation decreased your daily pain even a little it would be a blessing.

      Continue to keep us updated!
      -Katie

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  • By Monkeybrew

    Hello to All!

    I have been out of the MHNI inpatient program at Chelsea Community Hospital for two and a half days now. What a relief it is to sleep in one’s own bed after two weeks of a hospital bed!

    I am happy to report that I had an absolutely wonderful Saturday with only a minor migraine in the early morning hours that was completely stopped by one of the new abortive medications prescribed for my outpatient “toolbox”.

    Let’s not make this sound too good because, to be sure, there were some tough times during the last two weeks. I started of with an IV protocol of DHE. As the dosage on that was taken up over the course of several IV sessions and then sustained at the maximum dose it became clear this was not going to be the answer. The unfortunate fact is that this truth became evident in the form of nearly constant 4 and 5 level migraines (on the one to five scale of pain). Once this was clear the team swapped out DHE for Depacon.

    Concurrent to the IV protocols the team also performed a few diagnostic procedures. First up was the lumbar puncture. I must say that this was the most anxiety provoking of the procedures. There is just something about it that made me uneasy. As it turns out, despite not being sedated in any way, the procedure was only minimally uncomfortable. The results showed that the pressure of my cerebrospinal fluid was within normal ranges.m Additionally, the physician performing the the LP drained off 22 cc’s of fluid to send to the lab for routine testing. Neither he nor his staff indicated any concern. Post procedure the migraine continued along the same track, which was simply horrible. All 4’s and 5′. Staff talked to me about the possibility of “spinal tap headache”, but based on the described symptoms what I was experiencing were the same migraines that have followed me for over half of my life.

    Another procedure, or more accurately a group of procedures, also diagnostic, were bilateral cervical facet nerve blocks C2 through C5. Thankfully I was give conscious sedation for this one! Unfortunately, the cervical facet blocks did not have an impact on the migraine. The pain level continued at 4’s and 5’s. Perhaps a relevant observation might be that while the procedures we lined up and performed my entire medication (preventative and abortive) had been dis-assembled and was being recreated with different medications.

    Next, you guess it, more blocks. This time I met with another team member who handles more superficial blocks that can be performed right there on the Head Pain Unit at the hospital, rather than the surgical center connected to the hospital. This makes things much more convenient. After a conversation with the physician and his nurse we decided to move forward with a bilateral greater occipital nerve blocks. These first blocks were with anesthetic only, no steroids. After reporting some short-lived improvement we went ahead with the same blocks again, this time with a mixture of anesthetic and steroids.

    Additionally, I had bilateral supra orbital, supra trochlear and zygonatictemporal. These blocks, with anesthetic and steroids did have a positive impact on my migraine within minutes. This quick-acting effect, I realize is the anesthetic, but I am never one to pass up any pain-free time!

    Throughout these procedures the other team members continue to follow my case, taking note of any changes in the migraine. Daily, changes were made to the abortive list. The IV protocols were not as quick to change.

    At the end of my stay, Friday 10/10/2014, I was hopeful that the procedures and medication changes would have a positive impact on the migraine. I must admit, if I am to be completely honest, that leaving the hospital I was at a 3 on the pain scale. My goal of a 50% reduction in intensity may have been met (close anyway), but the frequency was the same, daily.

    Finally, upon returning home I was so glad to see my family and also so very glad to sleep in my own bed! The next day, Saturday October 11/2014, I awoke with a very mild migraine. I would rate it a 2 on the 1 to 5 scale. Per my shiny new abortive plan I pick one of the abortives identified for use with mild to moderate migraines. In this case it was Lyrica 75 mg. One capsule… an hour later, the migraine still hanging on, one more (and my final for the day) 75 mg capsule of Lyrica.

    Great news! within another hour the migraine had completely left!!! This was such a shock to me. These things almost never leave completely… Wow, what a great day!!!

    Today, I woke up feeling great again, with no migraine. I seem to have quickly shifted back into my normal waking pattern as I was up just before 5a EST. Things are quite in my home at this time so I usually read or write or post updates here!

    Somewhere along the way of the reading of all my paperwork from my inpatient stay and drafting this far too long update about my stay at MHNI, a small migraine has tried to sneak by me though the pet door or something. Since this is early on in the migraine and I can use Lyrica up to three times a week without entering rebound headache territory I think I will walk away to address this and finish my update in just a moment (because of stuff like the Space-Time continuum, String Theory, Quantum Mechanics and the Internet – this will seem as those it did not take any time at all). Science and the Internet are Magic!!!

    Okay, let’s cover more of the last two days, out of the hospital days. As i mentioned above, Saturday was good. Minor migraine in the morning. Lyrica knocked it completely out of my head! I spent the rest of the day running errands and visiting with family. The migraine stayed gone all day! This is nearly a miracle!!!

    Concluding thoughts (for this posting)… The inpatient program that Dr. Saper directs and oversees is one filled with talented and qualified team members. The inpatient setting, although often cut too short due to insurance, does allow for more rapid medications changes/evaluations as well as diagnostic and therapeutic procedures. I would highly recommend this program to anyone who has struggled with chronic migraine. This program and others like it (search the posts here at Migraine.com, there are a few clinics that specialize in migraine) might just help you to get your life back on track.

    I don’t want to sound like a pessimist, let’s say a cautious realist so I must remind the reader that this is a journey over mixed terrain. Some sections will be nice, smooth blacktop while others might be exposed tree roots or loose stone. I guess the moral of the story is to adept the best you can for the terrain on which you are currently running while always looking for signs leading back to that smoother section of trail. Oh yes, do not feel obligated to visualize your self running some sort of race. The visuals work just as well for someone, like myself, on a nice brisk walk on a very chilly October morning.

    To all of you who have provided so much support to so many members/readers, please allow me to say, “Thank You!!!!!”. This group, this community, has been such a blessing!!!

    MB

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    • By Katie M. Golden Moderator

      Monkeybrew,
      For the 2 days you’ve been out of MHNI, I’m excited for what your new plan can do for you. It seems like the doctors laid out a specific plan for you to follow. I think that’s what the majority of u

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    • By Katie M. Golden Moderator

      Monkeybrew,
      For the 2 days you’ve been out of MHNI, I’m excited for what your new plan can do for you. It seems like the doctors laid out a specific plan for you to follow. I think that’s what the majority of us really want. What do I take when my pain is at X. How many times can I take it? What can I do when it doesn’t work? Who do I call, how can I figure out the system to get immediate attention? I’m so glad they’ve given you an outline to work with. Jefferson did the same with me and it was so helpful. Over time it has changed, but when you’re in pain you don’t want to have to think about what you can or cannot take and this plan seems to help with that.

      You’re also cautiously optimistic, which is very realistic. This attitude will help you down the road. If the headaches come back stronger, you won’t be as upset since you weren’t betting everything that you had found a cure. And on the flip side, if the frequency and severity of your headaches decrease even more, than you’ll be pleasantly surprised!

      I really appreciate the detail you have given about your stay so that I can direct others who are thinking about the program to read your story.
      And as always, keep us updated!
      -Katie

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    • By Monkeybrew

      Katie,

      Thanks so much for the encouragement and feedback. I cannot help but think that my narrative of the MHNI inpatient experience is a bit fragmented, across all theses posts. I would certainly be willing to write a single narrative document for publication or posting in a way that would allow for readers to more easily digest the experience, from my perspective.

      Now for another update… Today I intentionally pushed into dangerous territory, by that I mean triggers. I helped out with some physical chores, which most would consider “lite” or “moderate”. For me this work was well into the danger zone. I followed that up with some wild “yard tennis” with two of my sons. A short hike to see Fall colors. Finally one single, lonely beer.

      Normally any one of these induce a moderate to severe migraine. Before the inpatient program any two of these activities would have had me at a 5 on the 1 to 5 scale! I can say, as I type this, that I allow I am not free of migraine pain I am at a 2. Keep in mind this is post-evening preventative medications. Before the the medications I was at a 3.

      Queations that are rolling around in the old noggin…

      Are these improvements the result of the complete dismantling of my medication regime and the replacement new
      medications (fewer)?

      Is it simply that the two weeks of inpatient, with intensive therapies broke the bad cycle of migraine and I am now on the other side, with the dark storm clouds behind me?

      Beyond the changes in medications there were other therapies. Nerve blocks primarily. Some of these nerve blocks involved only anesthetic, serving as a short-term diagnostic. Other blocks included steroids, which the team members told me could take up to four days to impact the migraine process. I would be in in the window now, where the steroids could be working. So, I cannot help but wonder if that steroids from the nerve blocks might be bringing about the relief?

      Of course, because the true source / root cause of the chronic migraines is not known (I have no history of head or neck injury, no obvious organic issues that can be identified as the cause of the migraines) it is difficult to pinpoint the source of the relief. With the time constraints of the inpatient program there really is no choice other than to plough forward with rapid medication changes and nerve blocks in quick sequence. This, however, leaves one guessing at what might be effective. Perhaps in follow up we can discern such details.

      Again, to all who are following and reading, I hope you find some of this detail and perspective helpful. I am certainly willing to answer any questions that anyone might have. Please feel free to post them!

      The evening medications are pulling me toward sleep. I hope everyone can find some peace this evening.

      Take Care,
      MB

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    • By Katie M. Golden Moderator

      MB,
      I don’t have the answer as to why you’re feeling better now. Could be the new meds, could be the 2 weeks of rest you got, could be a placebo effect (although I doubt that one). Whatever the reason, I am really excited for you.

      I am concerned that you’re taking on too much so soon after leaving the hospital. I know you want to go on a hike, work around the house, and play with your kids but you may be tempting fate a bit by doing too much in one day. You’re still in the very early stages of the healing process. You’re allowed to feel good, but that doesn’t mean you should be going crazy with catching up on all the things you’ve been missing out on. Take it slow!

      And yes, if you are interested in condensing your story about being at MHNI, please do so and submit it via the Migraine Stories section in the Community section.
      -Katie

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    • By Monkeybrew

      Katie,

      You raise a very meaningful concern. After feeling so bad for so long I do feel this compulsion to jump up and start doing all sorts of things!!!

      I can tell you, however, that today taught me a bit of that lesson. I kept things lite through the afternoon. Honestly, I mostly got caught up in sorting and filing paperwork that had been piling up for some time now. A few other odds and ends.

      About the time I drove to my youngest son’s school is when it started, when my nemesis, Marvin [the migraine]. The late afternoon and evening were not as pleasant as the morning, but at least the migraine did not move upward in intensity.

      Still, definitely a warning shot across my bow… “I am still here and I can still grab you!”, says Marvin.

      Thank you soo much for your reminder of the fact that this is a process and not an On/Off switch!!!

      Take Care,
      MB

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  • By Sunnynshare

    Dear MB,

    I am so glad you were discharged from MHNI with some success and feel like you have some tools to deal with the life of migraines. Maybe I wasn’t the only one that sent them the message of trying to put everyone in the same mold and treating their patients as individuals with their own treatment of care and helping them what their goals are. It still doesn’t sound like they aren’t offering any new cutting edge therapies. I can get many of the therapies you mentioned through Michigan Pain Consultants (I live in the West Michigan area) as an outpatient. My pain specialist physician is trying very hard with offering help with the battle of chronic pain. I had steroid injection blocks last week and know what you mean about the few days after being given steroids. I have had my share of like stresses (as most people do) but that 10 days of my life is up there with the worst in my life experiences (at MHHI).

    Keep writing about your experiences. I am really interested in your results. I get a lot out of Migraine.com and it has given me support and hope on a regular basis. (Thank you Migraine.com!) I loved Kerri’s article written on September 14 on “Invisible Illness, Invisible Person”. It is a great support to know others’ struggles with the same issues of chronic migraines with possible solutions.

    I’ll be watching and wish you all the best!

    Sunnynshare

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  • By RogueOne

    Hi, sorry to “bump” such an old thread, but I have been seeing a doctor at MHNI for almost a year now. That doctor was wonderful, but has recently left the practice. I had my first meeting with my new doctor a few days ago and after reviewing my history and consulting with Dr. Sapier, he recommended the inpatient clinic. The thought of a week long hospital stay frightens me, as I’ve never been hospitalized (other than my somewhat frequent ER visits). This thread has helped.

    My concern is that while I always have a migraine, the severity varies greatly. I have a full-time job that I can function well enough to get by, but some days are really hard to focus and I probably *shouldn’t* be working. I usually miss about 10 days of work per year (even though I’m officially only allowed 6). I can start my day at a 2, then hit a 4 for a few hours, then settle back to a 2 without even taking any medication as I’ve yet to find any that helps. I’m not sure how myself or the doctors will be able to evaluate whether the medications I am given are helping or if the pain is subsiding on its own and will come back in a few hours/days. Never mind that the pain sometimes starts at a 3 and just stays there all day. Obviously, if I become pain free we’ve really hit on something, but I’m not getting my hopes up. And a small part of me wonders if all of the treatments they cram into that week will “break” me, making my migraines worse than what I am able to handle.

    Basically what I want to get out of my treatment is a reduction in the number of days I have a migraine, and an effective abortive for when I have bad ones, so that I don’t feel that I am squeaking by at work and maybe have some sort of social life/reliably make plans without making sure I have a way out.

    My doctor knows my condition and believes this will help, but I’m just curious if anyone who has been through the program has any thoughts regarding how it will work with my unpredictable pain levels. I’m still on the fence about whether I should try it.

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    • By PLR

      Hi RogueOne!

      Please read the plricotta posts. My son is still in a much better place since Dec 2013. Possibly because he has matured (now 18 yrs), along with the MHNI meds, he is handling life so much better. He has a summer job as a Laborer for our town, and although he has missed 1 to 1.5 days/wk due to a migraine, he has help the job down with glowing reviews from his supervisor on the days he is there. Probably best summer hire, even though his work week has fewer hours than the other employees.

      Methergine and DHE have been a huge help for him, as well as the non-triptan abortives. His life is not that of a ‘normal’ teen, but it is so much better than 20 months ago. If you are looking for some social life as well as fewer ‘sick’ days, I would say, don’t hesitate doing the inpatient program. Good Luck!

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  • By PaulaJan

    In 2000 I spent two weeks as an inpatient in Chelsea. I did very well there and was nearly pain free when I was discharged. When I got home and returned to work and home life, however, migraine returned and I wasn’t able to manage the condition with the tools used at Chelsea. When I’m in a controlled environment I fare better….but life just is NOT controlled by any means. I have quit working, continue to have migraines and am still searching for a regimen that is effective. I take a massage every week and that helps the most. I am seeing a different neurologist soon and she is listed as a migraine specialist. I hope she has solutions for my conditions. I have been on almost all the meds available, don’t tolerate triptans at all, and get Toradol and Phenergan injections when the headache becomes unbearable. I seek better preventives.

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  • By Sunnynshare

    Dear Monkeybrew,

    I’m glad you have had somewhat of a good experience at MHNI. I spent 10 days there in December of 2003. It took a couple of weeks to have a bed open up for placement in the inpatient program. I was so hopeful for answers to my migraines that I have struggled with since I was a teenager. I found it was nothing like I expected. When I was a patient, I felt like they would not listen to me. When Dr. Saper came in with his entourage early each morning, I was not allowed to ask questions. I was also not allowed to have my husband at the bedside, although, one morning he refused to leave because we were there for answers. I was assigned a PA to get my treatment plan and as many times I asked to speak to him, I did not get time with him until the 5th day of my stay.

    I kept asking the nurses what my “plan of care” was, which they kept preferring to but no one would explain it to me. I told them prior to my admission that any tricyclic antidepressants I had previously tried, it triggered a migraine. So the first medication they gave me was Sinaquan, and as expected, I vomited all night. The nurse came in, told me I would get “my protocol”, took my blood pressure and it was 200+/100+. She left in a rush and flippantly told me my bp was too high and I didn’t qualify for “my protocol”.

    I finally fell asleep and they woke me up for Dr. Saper’s rounds and then expected me to attend classes that were held throughout the day. Sure, they tried a few procedures, meds, and tests but in the end, I begged to be discharged so I could spend Christmas at home with my family. Did I mention I am an RN and know what “plan of care” and “protocols” were? But I never did get an explanation of what it meant in their facility and what my treatment plan was.

    I requested a meeting with the charge nurse prior to my discharge and explained my frustrations with the program and how I felt. My primary care physician got a letter of how I was uncooperative, even though I jumped through every hoop and really did try to get as much as I could from the program. I was there to get better, and, hopefully, answers but all I came away from it was doped up on meds, a couple of new diagnosis’ and a very bad taste in my mouth.

    Fortunately, my insurance paid for most of the program but I would never recommend this program. I felt isolated and scared most of my stay. I bonded with a few other participants, which got me through those 10 days.

    I really hope they have changed their program and treat their patients respectfully and as individuals, not putting everyone in the same boat. We all have different experiences and by the time one is desperate enough to go into an inpatient program, we need understanding and encouragement.

    I really am “Sunnynshare” and try to give my patients the treatment and respect they deserve when they are under my care in a hospital setting.

    Sunnynshare

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  • By Monkeybrew

    Sunnynshare,

    I am sorry to hear that your experience was, in many ways, so negative. I can tell you that they have most definitely changed the program. During the week each patient joins the entire treatment team in a conference room on the Head Pain Unit. While it was clear going into rounds each morning that the team had some thoughts and ideas about next steps (usually for that day, possibly into the next day). What I also found, however, was that I was always given the opportunity to ask questions and raise concerns.

    After the first day of rounds I was assigned a PA to follow my case. From there onward, each day (except Sat/Sun) after rounds my PA would visit me in my room to discuss the plan for that day, including changes in IV protocols, changes in rescue/abortive medications (including a suggested order in which to try the abortives). Additionally, my PA briefed me on any scheduled procedures like nerve blocks or lumbar punctures.

    I definitely found the program to be helpful. Part of this helpfulness is, I believe, based on one’s willingness to step forward and become a true partner in one’s treatment with the team.

    Let me be clear, however, that this was not a cure for my chronic migraine. What has happened is a decrease in intensity from 4’s and 5′ (on 1 to 5 pain scale) to more like 2’s and 3’s (with some 4’s here and there).

    Back in the real world I would be lying if I said I was not a little anxious about how my new outpatient treatment program will hold up. So far (was discharged on Friday and today is Tuesday). My outpatient plan has had a few days and so far, so good. I am waiting on one abortive medication because of an insurance hold up. Otherwise things are going okay.

    The good thing is that I have follow up appointments with my PA and one of the MHNI psychologist on Thursday of this week. This will allow for a more clinical and formal evaluation of the treatment plan.

    I would be remiss if I did not mention the fact that the medication regime (preventative and abortive) I had in place prior to the inpatient star was completely dismantled and rebuilt with just about all new, or at least “new again” – having taken just about every medication used in the treatment for migraine. I believe that the necessary adjusting period took place in the inpatient unit. I am confident that I am through the worst of that.

    The other component that might still be reviving up are the steroids used during a couple of the nerve blocks. I have been told that the steroids can take between 4 and 6 days to take full effect. Time will tell how this goes. I will post an update after my follow up visits if not sooner.

    Take Care,
    MB

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