Isn't thirty years enough?

By Kimberly 1975 Wednesday, January 11, 2012

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I've had diagnosed migraines for over thirty years now; been treating them with specialists since 1991. I haven't bounced from Doctor to Doctor, but I have moved on when the treatment appears stagnated, or I'm recommended to someone more experienced. But as time goes on, and I've tried virtually Everything presented to me (other than surgery, which has never been proposed), I'm beginning to wonder if anything will ever change! Speaking of change, yes, I've been through that too, and let's just say The Change didn't change anything! I've tried every preventative medication catagory (anti-depressants, anti-convulsants, anti-psychotics (!), anti-inflamatories, etc, at every dose for every conceivable amount of time, every rescue med - oral and injected (I won't go into all the catagories except to say all the usual suspects including ergotomines, triptans (3), OTC's, DHE-45, Tranquilizers,(i guess i am going into all the catagories!), Benadryl Inj IM, more Doctors special concoctions, opiates and narcotics!, and many, many more I've totAlly forgotten! All kinds of treatments including, but not limited to: therapy, physical therapy, traction, accupuncture, therapudic swimming excercises, aromatherapy, chiropractics, biofeedback, deep breathing, TENS unit, meditation, psychiatry, excercise, posture improvement, TMJ diagnosis excercises and prostetic, Healing Touch, special pillows & sleeping positions, yoga, pressure point injections in my neck and temple, epidural in my back with steroid injections, Botox (36 injections all over my head & neck!), supplements, Doctors' special concoctions and mixtures - have you got the picture? I've been in Urgent Care &/or ER over 100 times easily in the past 20 years. I've faithfully kept a headache and treatment journal, as well as weather, mood, food, and sleep journals. I've done EVERYTHING any Doctor has asked me to and have only been marginally compliant with one, which is excercise as its so abjective given to how bad my pain is & it can frequently exasserbate the pain! So, after all of that, as well as the things I may have forgotten!, when I tell a Doctor in an ER room that I've tried everything, and narcotics is the only thing that will work, why do they want to argue with me? They say that they don't work in the long term, and I agree with them and go on to say that they are still - after 20 years - working for me, when, unfortunately, nothing else does! I know it only masks the pain, but that still means I will likely be pain free for several hours, or even a day or more if I'm lucky, but that "other stuff" they want to use (that I've already tried many, many times unsuccessfully) is just going to waste our time and prolong my pain! I also realize that trauma Doctors , understandably, don't get any more than - maybe! - three hours of migraine education. I've bad Drs tell me everything from "If it's lasted more than 24 hrs then it's not a migraine; they don't last that long." to "Have you ever thought about having a Hysterectomy?" WHAT??? There's absolutely not a shred of medical evidence to suggest no ovaries equal no migraines! In fact, somewhere around 30% of women get worse pain after menopause! Point is, as it's MY DISEASE, I've done about as much research as any person can on migraines and I'm still learning new things all the time, the most important information being that they just don't know yet exactly what causes a migraine and why! So my question is: Isn't thirty years enough time for me to have this malady? Can't I please be done now?

Comments (6) | Add comment

marinequeen

1/12/12 2:05pm

Kimberly, First let me say how sorry I am that you have had to suffer with migraines for so long. I feel your pain. I have had migraines since I was in my 20's and I am now 59. I also have a daily headache called hemicrania continua and facial neuralgia. Your story makes me realize that there are people out there that really suffer with these migraines even worse than I do. I have seen 14 different doctors/dentists/maxil facial surgeons/pain mangement clinics in 10 years. I even visited a premier headache clinic and they were unable to diagnose the hemicrania continua. Doctor #12 accomplished that by prescribing indocin. I take topamax for prevention of migraines and indocin for the hemicrania continua. I use treximet for when I do get a migraine which is still about 1 to 5 times a month. What has seemed to help me is a monthly B-12 shot which was ordered by my primary care physician for low B-12. I used to get at least 10 migraines a month and now I don't. I don't know if this is a coincidence or not but I will take it.

Nancy Harris Bonk, Health Guide

1/12/12 9:36pm

Hello, and welcome to HealthCentral's Migraine Community!

You bet thirty years is long enough! I wish I had the "magic answer" for you but I don't. What I can tell you are things you already know. Narcotics mask the pain

in addition to possibly creating another type of headache called medication overuse headache. No one wants to hear about this, and I totally understand that. But daily narcotic use IS a problem for Migraine managment.

Here is just a partial list of the many different kinds of moh we could possibly have from our article, Medication Overuse Headache - When the Remedy Backfires;

Medication Overuse Headache - When the Remedy Backfires

(Page 2)

The ICHD-II diagnostic criteria for MOH:

A. Headache^a present on 15 or more days/month fulfilling criteria C and D.

B. Regular overuse^b for more than 3 months of one or more drugs that can be taken for acute and/or symptomatic treatment of headache.^c

C. Headache has developed or markedly worsened during medication overuse.

D. Headache resolves or reverts to its previous pattern within 2 months after discontinuation of overused medication.

^a The headache associated with medication overuse is variable and often has a peculiar pattern with characteristics shifting, even within the same day, from migraine-like to those of tension-type headache.

^b Overuse is defined in terms of duration and treatment days per week. What is crucial is that treatment occurs both frequently and regularly, i.e. on 2 or more days each week. Bunching of treatment days with long periods without medication intake, practised by some patients, is much less likely to cause medication-overuse headache and does not fulfill criterion B.

^c MOH can occur in headache-prone patients when acute headache medications are taken for other indications.

What medications can cause MOH?
This has long been one of the biggest questions about MOH. There is now sufficient research to address many of our questions. According to Goadsby, et al, "There is now substantial evidence that all drugs used for the treatment of headache may cause MOH in patients with primary headache disorders." When they say, "headache," they mean headache and Migraine both. So, just which medications can cause MOH?

The answer to that question becomes clear when we look at the most recent revisions toThe International Classification of Headache Disorders, 2nd Edition (ICHD-II), where we find not only a classification for MOH, but a further breakdown:¹

8.2 Medication-overuse headache (MOH)

8.2.1 Ergotamine-overuse headache
Overuse defined as ergotamine intake on 10 or more days/month on a regular basis for more than 3 months.

8.2.2 Triptan-overuse headache
Overuse defined as triptan intake (any formulation) on 10 or more days/month on a regular basis for more than 3 months.

8.2.3 Analgesic-overuse headache
Overuse defined as intake of simple analgesics on 15 or more days/month^d on a regular basis for more than 3 months.

8.2.4 Opioid-overuse headache
Overuse defined as intake of opioid medications on 10 or more days/month^d on a regular basis for more than 3 months.
Comment:
Studies show that patients overusing opioids have the highest relapse rate after withdrawal treatment.

8.2.5 Combination analgesic-overuse headache
Overuse defined as intake of simple analgesic medicationss^e on 10 or more days/month on a regular basis for more than 3 months.

8.2.6 Medication-overuse headache attributed to combination of acute medications
Intake of any combination of ergotamine, triptans, analgesics and/or opioids on 10 or more days/month on a regular basis for more than 3 months without overuse of any single class alone.^f

8.2.7 Headache attributed to other medication overuse
Regular overuse^g for more than 3 months of a medication other than those described above.

Another thing people who have "tried everything" may want to consider is caffeine. Some migraineurs brains are extra sensitive and can become depenedent on just a little bit of daily caffeine. In fact, about 100 ml each day (I think that is a 1/4 of a cup) can create a dependency, and since caffeine is technically a drug, here we go again with medication overuse headache.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com. Under the Find, Manage, and Connect tabs at the top of each page, you'll find a wealth of information - educational articles, tips, quizzes, workbooks, support and advocacy information, and more.

Do you have questions about Migraine? There are three ways to get answers - through our Ask the Clinician column, in our community Question and Answer Section, or through our forum. Just go to our Migraine Answers page HERE.

Our email newsletter will help you stay up-to-date on Migraine and headache news and new information published on HealthCentral's MigraineCommunity. To receive our newsletter, click the "Sign up now!" link in the navigation bar across the top of our site pages or simply click HERE.

Welcome again,

Nancy Bonk
HealthCentral's Migraine Community Manager

PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

marcol

1/14/12 9:09pm

I know what have you been suffering, your writing seems likeif was mine, I know what are you going through and even more wishing to know when will all this stop and why there isn't a cure for all of us which go for pills to pills without finding the cure, I something really get desperate and without strenght to continue in this fighting daily that only migraneurs knows, most people have a wrong idea of ou r suffering, think it's in our heads there have been times that in the hospital tell "you just have to learn to control them" I really would like to do that but I know because I've been with migraines since I'm 11 years old that it's imposible, thanks for let me know that somewhere else there is someone who for sure understand me.

SusieB

1/15/12 9:48pm

I know what you mean; the ER doctor told me that I could just be back in there with worse pain they've learned. NSAIDs barely work for me, so it just dulls it enough. 30 years is long enough! Personally, I'm hoping that with medical records now being at the fingertips for most doctors that my treatments will be seen by them, so they know I have tried this or that drug, seen various doctors for different illnesses, etc. That would certainly help an ER doctor make decisions, if not include my neurologist in the converation on how best to treat me!

BLF

1/16/12 7:00pm

I could have wrote that same letter as everything you wrote I have done myself.When will it ever end?

I started at 5years old, it was about 1 very bad one a month,the older I got the worst it got.

I am now 63years and I have at least 10 a month, if I did not have imtrex shots or pills I would end up in ER as I get vomiting and diarea so bad that I can`t move.

I just said to my Dr. in Neurology I would have brain surgery if I thought it would stop the headaches.Thanks for writing this letter, it`s nice to know I am alone.BLF

1026laurie

1/17/12 6:59am

I understand exactly what you are saying and sincerely empathize. I too suffer and I do mean suffer daily migraine pain. And for some reason it just makes me feel a little bit better to know that I am not alone. You are not asking for others histories and/or suggestions, even knowing they are heart-felt and well meant. You just need to vocalize! Please hang in there, it can't last forever, can it? Only true migraineurs can understand the pain and the frustration this disease can cause. I hope you can find some kind of comfort knowing you are not alone and have the right not to be in pain.

Isn't thirty years enough?

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