I haven't had to endure a migraine's full wrath in quite a while because a medication called sumatriptan works for me. When I feel the thing begin its evil squeeze I take the pill and within an hour or two, I'm released.
I used to feel euphoric when the migraine lifted. Now I'm left with a kind of brainlessness. This is because I'm also taking a migraine preventer called a topiramate. It works. I was having 15 or 20 migraines a month and now I have about four. But topiramate has its drawbacks.
In some people, topiramate suppresses appetite. In some it causes paranoia or fainting, rapid breathing or blood clots. In me it causes sluggishness of body and mind. The worst thing is I have trouble remembering words. This would be no big deal if I were, say, a professional wrestler. Or maybe a neurologist.
I've told my neurologist how the topiramate makes me feel, how the word recall problem makes it hard to, um, you know, write words. He suggests I try different doses. He suggests I take it at different times of the day. He adamantly insists I quit drinking coffee. I tried that for an anguished six months, during which I was more sluggish than ever and had more migraines than ever. If I didn't drink coffee John would have to do all the laundry and grocery shopping and dog walking and that's not fair. I'd be a hazard on the roads. Hell, I'd be a hazard in my own house.
John suggested I get a second opinion. Duh! (If I wasn't taking this drug would I have thought of that myself?) He also suggested I research migraine preventers on my own. The first place I looked listed seven--SEVEN--alternatives to topiramate. I haven't had a chance to research them yet. Maybe they have side effects, like paranoia or blood clots or the urge to sleep with a moose.
But the doctor never bothered to mention these alternatives to me. Perhaps he doesn't know about them. He knows he wants me to stop drinking coffee. I begin to wonder if he went to college.
Obviously I don't have a migraine today or you'd be reading a shorter post. Anybody know a good neurologist?
29 comments:
Four is too many but 15-20? Yikes!
I have migraines too. They are stress related, mostly, so the frequency dropped once I stopped having my Mom babysit. They are also visual. I have some warning when they hit and the pain only comes if I try to "see" through the distortion. I once left a full grocery cart at the store because the lines were too long to wait.
Unbelievable that the doctor didn't mention the other medications. Sad to say but maybe cost comes into play?
I wish you great big heaps of luck with finding a solution.
Mine seem to be stress-related, too, BD. I can almost predict when I'll have one tomorrow, based on what's happening today. I'm trying to learn to control that. I wonder if you're right about cost. Doctors don't usually care about it since it's not their cost, but I guess I'll find out in my research.
I'm hearing from so many people who are unable to comment. Thank you for your emails. We should all write to Blogger!
Oh dear, do you feel like that mailbox?
I had to give up coffee, apart from the occasional latte,and now I'm a big tea drinker. Dilute Indian tea with milk. It's helped a lot, yet the caffeine gives me the boost I need.
My experience with doctors here is that they don't try very hard to find the right medication. I usually get the free sample the drug company rep left a few minutes earlier. No fine tuning, no follow-up, no "Hey, a better product has just come out, maybe you could try that." I don't think doctors are even aware of the cost of the medications they prescribe.
Today I don't feel like the mailbox, Bellis. I got to bed early last night and I've had a cup and a half of coffee. It's my morning limit.
I think you're right that most doctors don't put much effort into it. My blog posts to facebook; there my cousin reminded me one must really do one's own drug research. The doctors won't do it for you. We assume they're experts in this but apparently they're not. Maybe they don't have the time. They certainly have no idea of the cost
Should I return to the other comment format?
Trish, unable to comment in this format, sent me this email and said I could post it:
I recently changed internists and found out that a) one of my meds was causing the weight gain I've been fighting for more than a year (the old doc was giving me crap about the weight gain...) and b) that there are several alternatives to what I was taking, including a non-extended release version that is less likely to cause weight issues AND more effective for treating what we're treating. Yes, I had asked about alternatives. Yes, the old internist supposedly "specialized" in the disease in which the meds in question treat---so one would think he knows something about medicinal options. Nothing. New doc, new options. Not without issues, but at least the new issues are manageable and rather than letting the weight and disease get out of control on the old meds, I'm doing rather fine on the new meds.
One friend had horrid migraines. They Rx'd her metoprolol, a beta blocker, which lowers bp and is a mild anti anxiety med. She's better than new! Didn't have bp issues before, but she hasn't had a migraine in years! She just has low bp and has to be a little careful getting up quickly which is a far sight better than a migraine!
When I had kidney stones, the doc said "no caffeine". I'm not a coffee person really, but if you try to take away my chocolate, you're going to lose at least a limb! Told this to the doc and he covered his loins and said "Well, mayyybe a little chocolate once a month or so!". Reality is, I eat healthier now, I workout, I'm in better shape and drink plenty of water, so kidney stones really aren't an issue anymore and chocolate is back in my regular diet. phhhlbbbt to the doc who said I had to completely give it up 15 years ago! I think moderation is key and any doc who insists something MUST be cut out of a diet---unless you are allergic or it is the cause of a problem, needs to be educated. Keep on drinking coffee m'dear, we like you upright and functioning!
I'm with John, find a new doc. Might not solve the issue, but it sounds like the current one has a one track mind---to drive you crazy AND make you sluggish. And perhaps keep you on a med that either he gets a kickback for writing Rx for, is invested in the company, or a friend works for that company. Yes, all options which bug the hell out of me when I find out about how it changes docs and the way they treat patients!
My father suffered from something called Cluster headaches. Total agony. Actress Lisa Kudrow's father is the Cluster headache "go to" guy - I believe he practices in LA. He might be the one to go to or the one who might suggest the one to go to.
In my experience, always get three opinions. If two match, they MAY be right.
I agree with Bellis. Our son has had migraines since he was little. Before he was 6 we didn't realize why he would feel sick, not throw up, and be sluggish all day. He chose to not use meds - not sure that was the best choice for him. He still gets the migraines although not with the same frequency. I've only had one or two painful sessions and a couple more times when I think I had the visual distortion rather than painful versions. WIsh you well, they can be a bear.
I'm going to ask for a referral to Lisa Kudrow's dad. I wonder if he's a preferred provider under my insurance?
I had my first migraine when I was in my late forties...yep...perimenopause! Since then, I've been on bioidentical hormones...and I rarely get headaches anymore (any headaches!). I used to have headaches as a young woman, but not migraines...I never associated them with hormones!!!
Have you tried acupuncture???
The concept of migraines is pretty amazing...why some people get them at the frequency that you do and others, nada...
Caffeine is one of the main ingedients of Excedrin which was my drug of choice when faced with a stress headache...until I found Advil...but that's good for normal stuff, not what you're facing...I remember your 6 months without coffee...glad you're off the wagon now!!!
my friend suffered from migraines too. she took a pseudeophedrine and tylenol and that relieved the pain.. it worked for her- not sayin' u should try it.. another took tylenol sinus....
and yep, i can believe hormones do play a big part...
Have you tried asking your dentist? I had migraines until I went to an orthodontist and got braces to correct my TMJ disorder. That pretty well took care of them, and I don't get headaches too often (maybe once every month or two) now, and when I do they are usually not as bad. Every once-in-awhile I will get a killer, less often one that lasts more than a day-and-a-half. Often these are related to sleep problems, change in barometric pressure, emotional distress, or not eating often enough.
Some clues to TMJ (temporomandibular joint, or jaw joint) disorder: grinding teeth, especially in your sleep; grinding your jaw; jutting jaw.
Good luck, Petrea. I hope you can find a solution.
This is turning out to be such an interesting day. I should post about migraines more often! So many different suggestions have come in, here and in email, that it only proves that there are as many types of migraine as there are individuals, and probably as many cures.
Some of the suggestions I've already tried and the rest I will try. Thank you. It would sure be nice to beat this thing.
Yes, the acupuncture works. I've sent a few migraine friends to Dr. Lin at Dynahealth, across from the Huntington Hospital entrance. Between that and sometimes some diet adjustments, or making sure to stay hydrated with WATER can make all the difference. Even then a pill may be needed when you feel the bad one coming on...
Dear Petrea I feel for you. I thought I was having a hard time with migraine once a month. I had no idea anyone could have as many as 15 or 20 per month. Now I feel priviledged and will never complain again. I can't give you any advice as medications available in France would be different anyway but I hope some of the suggestions above work for you. I'm really sorry that a migraine prevented you from having a good time with jb from Mainz when he was around.
So sorry to hear of your suffering, P. Another source of information about meds would be a pharmacist. They are more up-to-date than docs on all these things, especially how various drug combinations might come into play, including caffeine. I've never tried it, but maybe a good pharmacist could make a good doc recommendation too. x
Good grief! I hope you find something really safe and effective SOON. Migraines run in my family, and both my daughter and I get them occasionally. Will let you know if I discover anything more natural that works well; right now it's Advil Migraine for us, but I tend to think anything over-the-counter or by prescription is crap, and don't really trust it.
My list is growing! I've never thought to talk to a pharmacist about this, that's a good one. I always thought the doctors knew more than anyone but I'm discovering that, at least in this case, either my doctor doesn't know or he doesn't want me to know. I'm shocked that he never mentioned all these alternatives to me.
Some things I've tried, with varying success. Water is hugely important and I always have some with me (or if you see me without it you know I just left it in the car!). Acupuncture didn't help, but it was worth a try. I think a trip to France is in order to try the French pharmaceuticals! Who knows? If nothing else, I'd be soothed by art and beauty!
Thank you all for your great suggestions. I'll try them all, although the France one may have to wait because my insurance doesn't cover it.
Given we both live in Pasadena, and there aren't many neurologists in Pasadena (at least, not ones who were available on our insurance), I wonder if we've seen the same one? Mine prescribed a drug that's not suitable for breastfeeding, four months after I'd had a baby, and ALSO failed to warn me that it can interfere with the effectiveness of birth control pills. There were other reasons I wasn't impressed with him, too. A friend saw him for her son, and was similarly unimpressed. I'd say get a second opinion.
Important to find out about your migraine trigger(s) sounds like they may be stress related but some allergy tests could help. Yoga can help control the stress but i'm sure you have thought of that already. Always always seek a second, third, fourth opinion, until you feel you have been listened to and helped to find a way forward. A recommendation to a practitioner who has helped others is invaluable. I do hope you find some relief from what must be a very wearing condition.
Wow, Helen, it sounds like you got a doozy of a doctor. Mine's in Burbank so not the same. I don't think he's a bad doctor, I just don't think he's seeing all the options. Yours sounds like a bad doctor!
My dear Petrea, I'm sorry to read of all the trouble you have.
I never trust doctors to know much anymore. Yes, always best to do the research yourself.
Next time I am at the tomb of a holy zadik I will ask him to send you relief from these migraines? ;) Well, you never know . . .
Good luck!
My list grows longer and it's all worth a try. Yoga I know to be good. I know nothing about a holy zadik but I'm willing to try that, too.
Oh interesting. (and sorry to hear that you suffer). The main medication my daughter has had for hers was until recently Pizotifen (may have a different name in the States?)- caused vastly increased appetite therefore weight gain - not so good for a teenager! Next suggestion was anti depressants which I vetoed because of links to increased risk of suicide in teenagers, and the difficulties in coming off the medication. Now she's on beta blockers which seem to be helping APART from causing mild Raynaud's syndrome - decreased circulation to hands and feet, causing fingers to go sort of purplish in cold weather. Perhaps not so much of an issue in Pasadena as in Scotland. Oh, and once she came off the Pizotifen the excess pounds just dropped off. Good luck!
Several people have mentioned beta blockers. I had thought I wasn't a candidate because I have low blood pressure, but maybe in small doses those would work so I will read up on them. As you said, cold is less of a problem in Pasadena than in Scotland!
Petrea I could go on and on about my migraines! I've been suffering for over a decade. I was laid off from my job last month (thankfully) because I was getting migraines 6 days a week as a result of the stress. I have a good neurologist in Redondo Beach who specializes in migraines specifically. His name is Dr. Rederich, you can google him. Just any old neurologist WILL NOT DO, you need someone who specializes in migraines. I've stopped taking the generic sumatriptan due to its low level of efficacy. It used to be my go-to drug but it did leave me feeling dopey. Now I take Maxalt at the onset and it is FAR superior to generic sumatriptan. Everything causes my migraines from changes in weather, stress, strong smells, hormones, different foods, too much or too little sleep, I live a delicate balance! Anyway, check out Dr. Rederich, maybe he can help!
- Devon from AllOverPasadena
Thank you, Devon, your suggestions are great. I'm printing out all of this and acting on almost every suggestion. I hadn't even thought of demanding a neurologist who specializes in migraines. Duh!
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