Migraine

My husband asked me something today that I can't answer. How many people have as resistant a profile as mine when it comes to history of migraine and lack of preventive therapies working? How common is it that a migraineur suffers for this long without finding a regimen that helps?

MY PROFILE: Have had migraines for over 10 years. Started monthly, but quickly transformed. I get classic migraines with aura about twice a week. Each migraine lasts three days. Triptans help take away climbing-the-wall pain, but never abort, and never relieve pain enough to work. Although I may get a few hours to a day or so between migraines, I'm still exhausted and feel ill and then POP, I get another one. Most importantly, I've been tried on over 40 migraine preventives in various combinations and have second opinions a few times with migraine specialists, series of Botox, series of acupuncture, physical therapy, and practice biofeedback and other migraine supports like vitamin supplements, good sleep patterns, trigger elimination whenever possible, etc. NOT ONE migraine drug or alternative preventive regimen has ever helped to improve the frequency and the migraines have only worsened with time. SO....

Are you like me or do you know someone like me? My neuro says a percentage of patients are resistant to migraine preventives, but never stated a number. How common do you think this is? I'm very, very diligent about taking care of myself and doing everything possible to help myself, but have never, ever improved. How many are there out there like me who are really trying and haven't been able to get better?

Remember that our forum tends to get people with the most difficult cases. People who can be helped easily are out living their lives, not using a forum like this.

Keep in mind that with the meds available today, doctors can find preventive regimens for 95% to 98% of patients who need them. The remaining people can still be helped to have a better quality of life. So NONE of us should give up, or accept that nothing more can be done. Yes, finding the right regimen may be slow and difficult, but it is not impossible.

Keep chipping away at it, Marvel.

Marvel you sound like me! I have constant pain daily 7-8 on a scale of 1-10. I have the constant sensitivity to sound, smell and light. Temperature changes are brutal as well. With some meds I have seen slight improvements but my body seems to figure out w/in about 6-8 weeks that Im on a new med and then begins to reject it. I even saw this w/ acupuncture, chiropractic treatment, etc.

My cleveland clinic doctor told me there is nothing else he can do and sent me to a pain mgt doctor. The pain mgt doctor took one look at the long list of meds I have been on and just couldnt believe that at such a young age I have gone thru so much (im 29). At this point they are working on getting approval for the occipital nerve stimulator and telling me if this doesnt get approved Im looking at long term pain med treatment.

I quit working for about a year and now only work part time and barely able to do that. Most days I dont even get out of the bed or off the couch.

Sounds like me....pain EVERY day 5/6 at the very best of times. I feel like packing it in so often...it gets really hard to function. I do work full time - but have been "talked to" about my attendance for the past 2 years - things keep getting worse.

Just hang in there - I keep hoping it will get better and not worse (feels like it can't get worse)

...good luck and keep us posted!

quote:

Originally posted by nutcrackerHOST:
Remember that our forum tends to get people with the most difficult cases. People who can be helped easily are out living their lives, not using a forum like this.

Nutcracker is right. Most of are here b/c we have very frequent migraines and haven't responded well to preventives.

Maybe your husband should poke around our forum a little. It might give him a better idea that your case isn't that uncommon.

Helpless: Have you applied for Intermittant FMLA? If your company is eligible, its a good way to have some job security. I did it through mine. My abscences aren't all that bad, but it is nice to know it is there if it does become a problem.

Before January - that was me. I was migraining almost every day. Either that or a Tension headache going into a migraine.

I was in pain every single day.

Now, I get about 16 days in between, unless weather or hormones play tricks on me. I still think I can do better. You can too!

You all know there are a lot of preventives out there. Please do not give up because one or two or seven failed.

If your doctor says that he doesn't know what else to try - MOVE ON! Find someone else who will help you. YOU DO NOT HAVE TO LIVE IN CONSTANT PAIN!!!! It may take awhile before you find the right preventive treatment - but if you keep trying and don't give up sooner or later something has to help.

The doctors tell me my main problem is that I seem to be very resitant to many medications in that we don't see an improvement at all...in fact we see a worsening or things remain the same.

I'm definitely not giving up, but I've lost the great optimism I used to have years ago, after so many trials and things just getting worse. I've even had "second opinions" with doctors a few times and nothing new has emerged.

No, I won't give up, but at this point, yes, I do believe more in miracles, although I do continue the medicine and therapies.

I just don't understand why some people like myself are so resistant to preventives working. Even a SLIGHT improvement would be SOME sign I was more "normal." A couple years ago I did go several days, almost two weeks, without a migraine and the doctors have gone over this, and I've gone over this time period over and over again, but we can't figure out what was different and why I got this "migraine holiday."

No, I'll never give up. Not in my blood

And if I recall, You don't have any sypmtoms of IIH or Chiari or anything that could be making you resistant to medications?

I was similar to you not to long ago. I started having migraines when I was 15 (only once a month, boy those were the days!) and then as I got older they became more and more frequent until they were every three days, if I was lucky, every four days. I would be bedridden for at least two days, sometimes three days and would end up in the ER for a "migraine cocktail".

I count 14 preventives that I tried and that didn't work and those are the ones that I recall giving at least three months to work. I also tried steriod injections, hypnosis, massage and seeing a chiro but none of those alternatives worked for me.

In January I started seeing a migraine specialist and started new preventives and now I have at least a five or six day break in between my migraines and they only last a day or so. They aren't as severe either and I've only been to the ER once since I started seeing my specialist. So, there IS hope out there!!

Since 2006 I've had daily or near-daily migraines. I also have persistent aura.

I think that my incidence of migraine before 2006 has been pretty much been the same, too, because I haven't ever remembered a day without head pain for the most part. But having seen a doctor when I was young who said it was "just migraines", I didn't seek out any more help.

Sometimes it takes a long time for your body to find what works for it. You're really at the mercy of what you're brain is looking for, not for what YOU'RE looking for.

Plus, with so many diseases being co-morbid with migraine it's always a possibility that one is being unsuccessfully treated because they are treating the wrong malady! Or you have to ask questions about your environment. How do the outdoors treat you? What about lighting? Weather? Hormones? What CAN you control and what CAN'T you control? Stuff like that.

I've resigned myself to the fact that it may take years to find the magic combo...Which is a hard fate to swallow sometimes.

I've been on various preventives for 18 years. I've had success with some, for maybe 6 months. "Success" means pain that responds pretty well to treatment, and I can function. At one point, I was even considering going back to work. But that's been several years. I have maybe 2 or 3 pain-free days a month.

I have never counted the preventives I've been on, but I'm sure it's a depressing number. My local neurologist has a special interest in headaches and migraines, but he was out of ideas. I started seeing a specialist 6 months ago, and I'm seeing improvement. My pain level is less generally, and I'm having fewer killers.

I'm continuing to see my local neurologist so that I have someone local in case of an emergency. The specialist knows this.

Have you tried Nardil? It's kind of an end-of-the-line preventive, and many doctors won't prescribe it because of the rigid dietary and drug interaction restrictions. It did a good job for me for 2 years. It stopped working Christmas 1999, and I've been looking for the right combo ever since. Zyprexa has helped some of my friends. It's got a huge weight gain profile.

My doc says there's an effective preventive regimen for everybody; it's just a matter of finding the right one.

FWIW, my specialist is Dr. Jan Lewis Brandes in Nashville. I can recommend her.

Gret

marvel --

i have daily migraines. it's been 3 years and 8 months. they started off 'normally', i'd get one every month or two, then they just got more and more frequent, and longer and longer until they were everyday. haven't let up since.

emily

I have had migraines for 27 years. I just came off of a three day migraine. I had one for 4 days last week. I am on disability for the migraines, so tell your husband they can't be that uncommon. Also bless his heart for sticking with it. I have a wonderful, patient husband who stays with me.

Hi Laura and welcome to the forum family! We're so happy you found us. When you get a chance, check out the Start Here folder for information and guidelines about the forum.

I look forward to seeing you around

Hi, Laura, and welcome to the forum! I'm glad you have such a fabulous husband!