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| Just back from Michigan http://www.thedailyheadache.com/forum/viewtopic.php?f=5&t=15 |
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| Author: | vfalsgraf [ Mon Feb 18, 2008 10:22 am ] |
| Post subject: | Just back from Michigan |
Hi. I'll try to be quick. Migraines since age 6; debilitating for over 20 years. Unable to work for last few years. Headaches put me to bed 3-7 days a week. Tried it all...acupuncture, diet, exercise, physical therapy, vitamins/supplements, about 70 various meds, meditation, biofeedback, psychotherapy, massage, guided imagery/relaxation, chiropractic (both regular and NUCCA), bioenergy work, osteopathic...you get the picture. Just back from Michigan Head Pain & Neurological Institute and only one minor headache in 7 days. Haven't achieved that kind of record in so many years I can't remember. NOTHING else has helped. And I was afraid that this would be the last resort, burn-out-all-my-major-organs kind of experience. I could go on and on and but it's really worth checking out for yourself. I'm happy to answer any questions, but don't want to sound like a paid salesperson. All I know is that I believe I may start having a life again...something I haven't had for a very long time. |
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| Author: | Kerrie [ Mon Feb 18, 2008 2:40 pm ] |
| Post subject: | Re: Just back from Michigan |
Excellent news! Congratulations. I'm sending good thoughts your way that the relief continues. Kerrie |
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| Author: | cookie77 [ Mon Feb 18, 2008 7:42 pm ] |
| Post subject: | Re: Just back from Michigan |
Wow, that is great. Can you briefly discribe what and how it was done? Spreading the information can't hurt and we surely need as many options as possible. |
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| Author: | vfalsgraf [ Sun Feb 24, 2008 9:20 pm ] |
| Post subject: | Re: Just back from Michigan: More Details |
Hi. I was asked to give more details and have been spending quite a bit of time thinking about how best my story would help anyone else. It's a bit long-winded, but skip to the parts that seems to speak to you. Background Migraines run in my family. Both grandmothers and my father had them. I've had them from a very young age but only got them a few times a year and somehow bounced back. Adolescence was a different story. They got pretty bad...much more frequent, much more painful. Back then, there wasn't a lot the doctors could do...caffergot, fiorinol, heating pads, rest in dark, quiet room. When my periods smoothed out, the migraines calmed down. I'd get a few a year, no big deal. I had more colds than that! With each pregnancy, the migraines were worse, until my 5th pregnancy caused daily migraines. They were the classic kind, with the loss of vision, "twinkly light," and pain like a freight train once my vision cleared. Giving birth put me back into a few times per year migraine. Then, when I was in my early 30s, I started getting them 3-5 times per week. I could usually medicate myself through work, but it was enough of a problem that I started the long and tedious and expensive trek through "possible solutions." What solutions have I tried? The list is long, arduous, exhaustive/exhausting, and includes some truly odd-ball things...a nod to the desperation I felt. * massage * CAT scan * chiropractic (both regular and NUCCA) * many different physical therapists * elimination diet * food allergy diet * gluten-free diet * acupuncture by 2 different folks * homeopathic medicine * naturopathic medicine * Chinese herbs * hormone replacement, both chemical and phyto-based * channeling * a strange additive to water to cleanse your system * About 70 pharmaceuticals * allergy shots * nose surgery (it often feels very sinus-like) * traction * bioenergy work * vitamins (e.g., magnesium, riboflavin) * ice packs * new age healing * relaxation & guided imagery * biofeedback * more sleep * less sleep * more exercise * less exercise * prayer * positive imagery * occipital nerve blocks from a pain clinic that has terrible communication skills and cared way more about the money and seemingly didn't care a whit about the patient. * psychotherapy You get the picture. Meanwhile, for about 20 years, the migraines continued to worsen. More frequent, stronger intensity, longer lasting. I'd gut it out at work, then go home and collapse. Finally, my "lack of reliability professionally" showed up in my performance appraisal (isn't that illegal?). Within a year, I was unemployed, and pretty much unemployable. Even starting my own business bombed because I couldn't be relied upon to meet deadlines or attend meetings. I was offered a highly paid, intellectually challenging job, and had to turn it down because of my health. I kept trying to cobble together the answers. I read voraciously on migraine...got advice from anyone who had been there. Tried desperately to find the solution so that I could have my life back. So what did all this mean in terms of my life? * constant guilt for letting everyone down * inability to plan any social dates...so not more friends over for dinner, going out dancing, going to friends' homes, dancing, buying concert tickets, making any plans at all * self-esteem in the toilet, along with all the self doubt. Do I just want to be sick so that I can get out of doing more work? Am I using illness because I'm trying to avoid intimacy? Am I just a wimp? The worst moments, I wanted to die. I had promised my family that I wouldn't act on it, but my depression was deep and dark. "I just can't live like this! I can't take this pain day in and day out." I resented having to spend so much time in bed. * huge loss and grief. Before they got this bad, I swam a mile every day. I loved to camp and hike. My husband & I played music together. Went dancing. Had parties. Babysat the grandkids. Laughed a lot. Ride bikes together. Liked to travel. Instead, I felt like I was putting more and more of the things I loved into a box in the corner. I couldn't play my (upright) bass for 10 minutes without the neck pain stopping me. I quit playing piano. I felt like the world would be a much better place without me. I also got tired of ER or Urgent Care doctors humilating me. "You're just drug seeking." "You got that right,...and you would be too if you felt like your head was being crushed by a semi!" So How did I get to Michigan? My neurologist said that he was out of options. He'd heard that the Michigan Head*Pain & Neurological Institute in Ann Arbor was the best in the country. I was afraid to go for 2 reasons. First, I was afraid that they would try the last-ditch drugs...you know, the ones that eat up your major organs in exchange for feeling a little better now. I wasn't sure I was ready to trade my future for my present. My send concern was, "What if this doesn't work?" This felt like the end of the road for me. But my desperation & despair made me finally decide to make an appointment to go, and I was fortunate that my husband agreed to go with me, because one of my triggers is flying, barometric pressure changes, fragrances (and there can be a lot of those on an airplane)...etc. So in Ann Arbor, they did a full-day evaluation of me. The clinic itself is such a relief. We thought we had gotten the time wrong because the building looked closed; however, the door was open. Then we realized that they have soft lighting because we are people with head pain. It is a fragrance-free zone. I can't explain how exciting it was to use the restroom and get to use the hand soap, knowing that it wouldn't have a scent that would trigger a migraine! Then they admitted me to the hospital -- Chelsea Community Hospital -- about 20 minutes from Ann Arbor. They have a whole wing devoted to head-pain patients. What an amazing experience that was on so many levels. First of all, this is what these doctors do... they get head pain!!! It's a multidisciplinary team...each morning, you meet with a neurologist, a physician assistant that is assigned to you the whole time you're there, your RN, a psychologist who is assigned to you the whole time, and others. They try various drugs, many of which are much more benign than what I've tried previously. They solicit your input about how you feel a drug is working. I had MRIs of my neck and head (no doc had ever done an MRI in the decades that I've been ill). We tried a facet block, and I had some temporary relief. What amazed me is what it felt like to not have any neck pain. It has been such a constant companions for so many years, that I wasn't even aware how much constant pain I had been in until the pain was gone. I realized how I was always rubbing my neck without even realizing it. We found a number of problems in my neck, which they said is what was triggering the migraines. So they did a cervical epidural. Between that and continuing to refine both my prophylactics and abortive medicines, I was able to experience 12 days without having to go to bed with a migraine. My record in the last 2+ years had been 5 days (that they only happened 4 times). How can I begin to explain the hope! We had lots of educational sessions, they are quick to point out that this is a chronic disease that we will be living with. The idea is to manage them because (at least for us all-stars), there is no cure to date. The Other Huge Benefits It was so validating to be around other people like me. It made me realize, no, I'm not lazy, a wimp, hypochrondriac, etc. I wasn't doing something wrong (how many times have we heard the well-meaning "I'm sure if you just did X, your migraines would go away." It was also so helpful for my husband. There is an inexpensive and very nice hotel on the premises for families, and they got to finally truly share the pain, frustration, loss, etc. of caring for someone who is chronically ill. Most people don't understand my husband's explanation of yet another of my absences because of a headache. "But I get headaches..." If only we had cancer or a broken leg...it would be easier for our loving caregivers to get the support they need. In conclusion I've only been out of the hospital 10 days, so life is still very new. But I've learned that I don't have to force myself to become superwoman on the rare days that I feel "well" (which really isn't well, but is rather a mild enough headache that I can do things) to make up for letting everyone down and not contributing my part to the household and chores,etc. There are no guarantees...but I wish I had gone years and years ago, because for the first time in years, I have legitimate hope that I may have a more normal life and get to be a participant a lot rather than a bleary eyed, sun-glassed, ear-plugged observer. PS Sorry about all the typos. Couldn't figure out how to find spell check with this new format. |
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| Author: | Kerrie [ Mon Feb 25, 2008 6:16 pm ] |
| Post subject: | Re: Just back from Michigan |
What an incredible story! I really identify with you -- both in history and reasons for being hesitant to try an inpatient clinic. It is hard to find a good account of an inpatient clinic. This is so helpful. I'm so excited for you and am sending good thoughts your way that your relief continues. Kerrie P.S. I'll look into a way to spell check. |
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| Author: | Rain Gem [ Mon Feb 25, 2008 8:20 pm ] |
| Post subject: | Re: Just back from Michigan |
12 days, that is amazing... could you please describe the procedure itself (cervical epidural). how large the injection, side effects, etc? do you know what mix they used? was it the last thing they considered? |
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| Author: | vfalsgraf [ Tue Feb 26, 2008 10:15 am ] |
| Post subject: | Re: Just back from Michigan |
Hi. There are a number of treatment options that they try at the Michigan Head Pain & Neurological Institute. I was relieved to learn that they don't do that implant that Kerrie had. The Pain Clinic here in Eugene, Oregon, had talked to me about that, and after reading about all the problems Kerrie has had (THANK GOD FOR HER WEBSITE!!!), I knew that was something I truly didn't want to try. So..cervical epidural. The "dura" is what covers out nerves, including spinal cord. (I'm not a medical professional, so you're getting my understanding of explanations I've heard...you may want to check things out on the web or with someone more knowledgable)> Anyhow, there is space around the dura...the nerves and spinal column don't "snug up" to the vertebrae...at least they aren't supposed to. So what the anesthesiologist does is inject a small amount of something like lidocaine and a steriod (cortisone) into the epidural spaces. My image is that it's like having a plant with the roots exposed and bathing the roots in something healthy and soothing. A couple of things happen with the procedure. Inflammation is reduced and it allows a lubricating effect on that bone-on-bone stuff some of us have with arthritis and degeneration. I was concerned that regular use of a steroid would further degenerate my bones (like osteoporosis). I have been reassured by a number of different doctors that this is not a problem for a couple of reasons. First, the injections are very localized...different than, say, taking prednisone in a way that it affects your whole body. Second, the doctors are very careful to limit the number of injections you can have per year. The procedure is not a particularly big deal, especially when you consider the decades of pain and disability we've already suffered. Like any "surgery," you can't eat after midnight. This created a problem for me the first procedure I had (facet blocks) because going too long without food triggers mongo migraines. In Michigan (where they actually LISTEN to your opinion), they put me on an IV feed of glucose or something so that I would have a more balanced blood sugar level. It was not all fun and games. My neck was moderately sore (so what? it always hurts anyway!) for several days. I did have other symptons, though, that were more troubling. Shooting pains in my head, some intense migraines, loss of appetite. However, after 72 hours (almost to the minute), ALL the symptoms resolved on their own. I took a 15-minute nap, woke up, had NO head pain at all, had NO neck pain of any kind, had an amazing range of motion (for me...I was almost gidy about that! My appetite and energy were back. So it seemed to me that whatever had to work its magic finally did it. I can't begin to describe the depth of gratitude I felt (and still feel) to have absolute pain-free days. It hasn't been perfect, but since Monday, Feb. 11 at 11:15 a.m. through today, I have had only one migraine that was bad enough to send me to bed. Even then., I was a little less light sensitive, and much more sound tolerant. (In the past, I've had such bad migraines that I could hear the electricity in the walls. My husband would unplug everythying, and still I could hear it and it was so excrusiating that all I could do was cry. The only thing that helped was that he would lay on the bed and try to surround me with his body and silently meditate, and his energy was enough of a buffer that I could stop crying. I know this may sounjjd really woo-woo to some people but my desperation level has been so off the charts that if swinging naked through the trees might have helped, believe me, you would have seen me out there! For the first time in years, I was able to remove all the tin foil that I had used to block out every ounce of light from out bedroom. It's not perfect. My heck is bothering me again. I have another treatment Friday, and I'm still nervous because - let's face it - who likes getting needles poked in their neck. But the way I feel...wake up in the morning feeling so thankful instead of thinking, "crap, I'm still alive"...I've been able to exercise on a regular basis!!! Start to plan (slowly) activities with my husband like going to a friend's barbeque. All I know is, I wish I had gone to Michian Years ago. Dr. Joel Saper, who started it in the 1970s, went through a lot of hell from his peers who didn't believe that it was a valid area, etc, etc. And yet he has hung in there and developed this place that we "headache all-stars" as he calls us can go, be treated with respect, be treated as individuals (I didn't know anyone there was had the same set of drugs or approach...each one of us was treated like our own unique puzzle.) They are quick to say that thisis a chronic disease and we are not going to find the cure here. But what we strive for is to bring back as much quality of life as we can with the most minimal intervention. I can't say enough abuot how life-changing this experience has been for both me and my husband. And how healing on levels far beyond the physical. Chronic, misunderstood illness spreads physical, emotional, spiritual, and social devastation. How many of us have thought "I just can't live like this anymore!" Were wracked with guilt because we couldn't be good mothers, wives/partners, friends, etc. Couldn't pull our own weight. Most of us have been smart, hard-working, intellectually engaged, funny, interesting people before migraines ripped our life to shreds. All I know is, this is the first of myriad treatments that has worked. It ain't perfect, but it's by far the best thing, the best hope, I've had. No, I don't get any residual financial incentives for promoting MHNI. But if there's any way you can give it a try (and I heard that ther even give scholarship for those who can't afford it, although I don't have any backup info on that), go for it. I am still happy to share any experiences that I ahve had and answer any questions if I can help0. My best to all of you! Warm hugs & understanding, Vicki |
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| Author: | Kerrie [ Tue Feb 26, 2008 12:22 pm ] |
| Post subject: | Re: Just back from Michigan |
I got the chills reading your story. What an amazing change you've had. I'm definitely looking into inpatient clinics. Take care, Kerrie |
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| Author: | cookie77 [ Wed Feb 27, 2008 6:35 pm ] |
| Post subject: | Re: Just back from Michigan |
Hi vfalsgraf... so how has the pain level been now? I am actually writing on behalf of my daughter who has chronic daily headaches for almost 2 years now. Recently over the last 3 weeks her head pain level has been very very bad and has caused loss of attendance in school. Not a good thing, but what can you do. Her specialist is a great guy, but he came to the conclusion that it may be time for her to take the next step. Low and behold, one of the clinics he is recommending is the michigan clinic. Your response is a great help. I am wondering if you can help with what questions I should ask our doctor regarding taking this next step and/or questions to the clinic. Stuff like is the clinic appropriate for a teenager? How long is the process (variable I'd imagine)? Was any other clinics recommended to you? If so, why did you choose Michigan? Anyway, any assistance and recommendations would be fantastic. |
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| Author: | Rain Gem [ Wed Feb 27, 2008 9:38 pm ] |
| Post subject: | Re: Just back from Michigan |
vfalsgraf, thank you so much. This is some good information. I was interested to compare the procedure to the one that's getting popular in England: article Lidocaine and cortisone... I think they used depomedrone instead of cortisone. Cortisone seems to be a more conservative approach but at the end it amounts to the same thing, looks like. The results and after-effects seem similar as well. vfalsgraf, would you terribly mind if I link-up your post on my site? There's a definite interest in nerve-blocks but not much is known about the procedure; a first-hand experience such as yours is invaluable. |
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