I’ve tried a variety of treatments since February, but haven’t kept you updated. It’s like I don’t want to talk about them at the outset because I might jinx it. After a treatment has failed, I push it aside so I don’t have to think about it. Here’s the surprisingly long update.
Naturopath
Shedding tears in the naturopath’s office the first time was enough to keep me from seeing her again. Against my hard fast rule that I not take anything I can’t identify (which I also broke with the acupuncturist), I took the homeopathic remedy, vitamin D and magnesium supplements she suggested. They did nothing.Chiropractor
I gave the chiropractor two months, which is the maximum time she told me it would take to see results. I went five times one week, four the next, three for a couple weeks and so on. Turns out I hold my adjustments very well. Unfortunately my migraines didn’t changed and having my neck adjusted freaked me out. Once she stopped asking about my headaches and focused on pain in my lower back, I knew she had given up.By treating me as a challenge for which she was sure she had the solution, the chiropractor made the classic mistake of nearly every “alternative” care provider and many physicians I have seen. That always makes me laugh, but leaves me wary that the overconfident provider is setting him or herself up for a fall. Which is what always happens.
Sleep Specialist
Many people with treatment-resistant headache disorders become much more treatable once they have sleep problems resolved. Although my sleep seemed fine, I saw a sleep specialist with a background in neurology. Sadly, my sleep is practically perfect. I sleep eight hours, wake up rested, nap when I need to without having it interfere with that night’s sleep.New Headache Specialist
A Seattle-based headache specialist that I’d never seen before was recommended highly, so I saw her in May. We hit it off immediately. Too bad we focused on my blog, headache patients in general and clinical trials. I left enrolled in a clinical trial for Lyrica and with a potential advertiser for The Daily Headache, but without having discussed any of my questions or other treatment options.I already had Monday’s appointment with my first Seattle headache specialist, so I didn’t make another appointment with specialist #2. Seeing specialist #1 again reminded me that she’s the right doctor for me.
Lyrica Trial
In the spirit of giving back — and possibly finding an effective drug — I enrolled in a clinical trial of Lyrica. Currently I’m keeping a headache diary and am to start the meds (Lyrica or a placebo) at the end of the month. I’m pretty sure I’ll drop out before then.Six months, the length of the study, is a long time to wait before I can get a prescription and test Lyrica out on my own. I have other treatments in the works and don’t want to confound the equation. Besides my impatience makes waiting more than a year to find out if I took Lyrica or the placebo agonizing. I can’t decide.
Wheat-Free, Dairy-Free Diet
This one needs it’s own post, which I’m working on. In sum, it looked like there could be a connection, then it looked clear there wasn’t. Now I have no clue.
That’s the update. Disappointing, huh? I have another round of ideas percolating. They seem like good ones this time, not acts of desperation. We’ll see.
has anyone tried magnesium, folic acid, feverfew and/or butterbur for chronic daily headache and if so have any of them worked?
I just found your website today. I have been struggling with migraine for about 2 years now. They have recently transformed to pretty much daily and they go back and forth between migraine and tension. I too have been to acupuncture, massage, chiropracter, nutritionist, homeopath therapy….etc. Anything to avoid medication. I finally decided it is time to take the step and try a preventative medication. I assume none have worked for you since you say tretment resistant. I just read about something new called limbrel(i think that is how you spell)It is being used for OA and sounds promising for any body inflamation.Thought I would share that piece on info if you did not yet hear about it
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Thanks! I don’t know anything about the drug. I’ll definitely look into it.
Kerrie
Kerrie, I have learned the same thing through COUNTLESS attempts to work with providers of alternative medicine or healing. They always seem to feel so certain that they alone have the obvious solution, sometimes seeming almost amused by my naive reliance on western medicine, nearly always quite judgemental regarding use of painkillers, and wanting me to just STOP that. Well eventually, I became amused at THEIR naive belief in all of these other things. These things do, I hear, help alot of people, but I don’t think that many of these oh-so-confident providers have treated migraine and headache at the severity level that we discuss in your blog. They couldn’t have, or they wouldn’t be so doggedly sure of themselves.
Like you said, I stopped looking for miracle cures, and am trying to shift my focus to hoping for/creating a good life with or without the migraines.
Thanks for writing about your various treatment attempts. I don’t wish this on anybody, but it feels tremendously supportive to know there are people out there (you and your readers) who DO REALLY understand this whole thing!
Lindsey mentioned myofascial release therapy and I responded about something totally different. Here’s what I’ve learned about MRT so far:
http://en.wikipedia.org/wiki/Myofascial_Release
I’m going to talk to a friend who is a rolfer for more information.
Kerrie
Hey Kerrie-
Thanks for sharing your disappointments – I understand how each one of them represents a small glimmer of hope that ultimately gets extinguished. I’ve also been seeing a chiroprator (for six months) who’s baffled he hasn’t been able to “fix” me. He’s just the latest in a series of meds and approaches I’ve pursued with very low expectations. I’ve been spending the past few years seeking relief for my chronic pain by setting myself up for another inevitable disappointment, but I can’t imagine not having the desire to seek hope. Anyway, keep that glimmer shining and continue to post what you find. It helps others know we’re not the only ones encountering these frustrations.
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Thanks for sharing your experience too.
The most effective thing for me is shifting my focus of hope. Now I have hope that I will live a good life whether or not I have migraine. This is in contrast to hoping that I’ll find a miracle treatment. That would be great, but I try to not dwell on it. That doesn’t mean I’m not hopeful every time I try something new, though.
Take care,
Kerrie
It is interesting that you bring up diet. I question wheat and dairy often and am yet again trying to give up dairy. Wheat is so hard to give up because it is in so much of what I eat. I am looking forward to reading your post on this. Thanks so much.
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It is so complicated to sort out, isn’t it?
I think I’ve just about finished my post on it.
Kerrie
Two thoughts: 1, what kind of magnesium supplement was it? Magnesium malate, preferably with manganese as well, has been best for me; and 2, have you ever had myofascial release therapy?
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I’ve taken a couple different mixes. The latest had magnesium glycinate, citrate and oxide in it. I know an earlier one had magnesium malate, but I didn’t take that one very long. Now I’m taking a calcium/magnesium oxide supplement.
I’ve been told by a couple naturopaths that having a mix of magnesium sources is important. I’ll look into the kind you mention.
I haven’t tried myofascial release specifically. The closest I’ve come is having massage therapists work on my jaw during a full body massage and massage my face and jaw myself.
Last week, my yoga teacher taught us some awesome self-massage techniques and stretches for the jaw and neck that made me feel better. Having someone else do it for me sounds even better. I’m checking for a provider right now! Thanks.
Kerrie
“By treating me as a challenge for which she was sure she had the solution, the chiropractor made the classic mistake of nearly every “alternative” care provider and many physicians I have seen. That always makes me laugh, but leaves me wary that the overconfident provider is setting him or herself up for a fall. Which is what always happens.”
I have laughed at exactly that comment so many times as well… especially when the doctor knows that you have been to so many other doctors before them with no relief, and and when the doctor knows how frustrated and upset you are with your pain… “Oh, sure, I’ve treated and cured LOTS of headache patients.” Ugh.
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I always give them a chance to try. If they have the solutions that works for me, fabulous. Too bad it hasn’t happened yet.
Kerrie
Whoops, sorry! I misread your post – you are thinking of dropping out BEFORE you take the drug. From what you say, it sounds like maybe you should.
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😀
Kerrie
Two thoughts:
First, I am looking forward to your “wheat-free” post. Ever since I tried a low-carb weight loss diet back in 2002 and a lot of nagging, non-weight related symptoms went away, I’ve been convinced that Wheat Is Evil. (Well, not for everybody, of course. But judging by the messageboards on eDiets, a lot of people have a similar experience to mine.)
Second, please check into what happens if you drop out of the study. They probably have to discard your data, and if so, it might be better to leave your spot for someone who doesn’t already know that she will probably drop out!
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Do you not eat wheat now?
Thanks for the tip on dropping out. I know they are still recruiting for the study, but if I drop out, it will be in the next week or so.
Kerrie