Migraine

I am new here, and new to the diagnoisis of migraines. I have had cfs since 1990. Headaches and fever were just something I took for granted as part of the course of the illness. The headaches never scared me as much as the left side numbness I would get-and how it messed with my balance. Or how when one of my fainting spells came on and I just would crumple to the floor.
I had a complete hystoerectomy because of endometriosis in October of 2006 and felt fine until about November of 2007. Since Nov I have had horrible headaches that won't go away for longer than three days at a time--doctor says its migranes and tension headaches.
How common is cfs/fibromyligia and hemipelagic migrane?

Hello and welcome to the forum family mlhrail

I'm so glad you found us although I'm sorry you have the need to be here. You've come to the right place for accurate information and lots of support.

Although Hemiplegic Migraine is a rare form of migraine disease, we have several forum members who suffer from it. Hopefully they will be along shortly to share their experiences with you.

Here are some articles for you to take a look at regarding tension-type headaches and hemiplegic migraines:

Tension-Type Headaches-The basics

Hemiplegic Migraine-The basics

Are you seeing a migraine specialist? A specialist would be the best doctor to help you manage your migraines.

I'm going to give you one more article to help you get started:

Learning About Migraines-Where To Start

Again, a warm welcome to the forum. If you have any other questions, just ask away!

Hi mlhrail,

I'm not aware of any studies on fibro/cfs and Hemiplegic Migraine.

Hemiplegic Migraine is a rare subtype of Migraine disease with two variations: Familial (FHM) and Sporadic (SHM). Since Migraine is thought to be a genetic neurologic disese they have started some genetic testing for HM. You can find that information HERE. I hope you find it helpful. I'm sure others with HM will be in to share their experiences.

We have another site on called Fibromyalgia/Chronic Pain, but has a fibromyalgia section. You can find that HERE

Mihrail, if you have hemiplegic migraines, I wanted to encourage you to seek out a migraine specialist. Some other doctors have never seen another case of it.

I'm not sure anyone directly answered the question in your subject line. CFS, fibromyalgia and hemiplegic migraines are *not* the same. Each is a separate illness, though they may be comorbid conditions, meaning they often occur together without one necessarily causing the other. This is seen more with migraine disease in general, rather than with hemiplegic migraine specifically, but as hemiplegic migraine is a specific subtype of migraine disease I would imagine the same logic would apply.

There is some more info in an Ask the Clinician question from last year HERE.

MJ
I don't know if I have hemipelic migranes but I am definitely going to bring it up to my neurologist. I see alot of my symptoms that fms or cfs never have explained and the doctor's solution was to put me on alot of the same meds--

I take flexril, lexapro, trileptal, amitriptylene and have for the last four years. Four years ago I had a period where I went numb on half my body after I had a bad series of headaches. It was about three monthes for me to regain complete use of my hands and legs--but the nerve tests that my neuro didn't find any neuropathy. I never have had anything show up on any of my MRIs or EEGs or nerve tests. But the neuro never see me until at least three weeks after the headaches have eased up for awhile. I have had these numbness episodes and fainting spells since 1990.

I have seen 5 neurologists, and dozens of other doctors. I have seen so many doctors that I will go through monthes to years when I won't go to the doctors--its better to suffer in silence than endure the never ending cycle of doctors who run the same tests, and come to the same conclusions. I have found a few gem of doctors who do come up with some useful drugs that do make life bearable for a while--but the symptoms always come back eventually. I have been disabled since 1990 and have just learned to accept the fact that I can't work and have to avoid doing alot of things others do in their life.

I so relate to everything that I read in all of your posts. I never had a diagnosis of migraines because I don't have visual aura, and rarely have made a point of complaining of severe headaches to my doctors--even though I have always suffered from them. I probably wouldn't even have diagnosis for migranes except that my DH heard a description of migraine symptoms on a commercial for Immtrix and said that sure sounds like your worse cfs days.

I don't get nausea with most of my headaches to the point of throwing up. I just don't feel like eating and so alot of days I don't eat very much--especially at night. I went through a period of about four monthes back in 2000 where I threw up every day and sometimes numerous times during the day. The doctor's solution for the throwing up was to put me on Nexium and Ultram--after three monthes I quit the throwing up and now only get nausea but rarely throw up.



Mary in NM

Hi Mary and welcome to the forum!

I am one of the HM sufferers that our hosts mentioned earlier. I also get migraine with aura, which is much more common for me than my hemiplegic migraines.

With my regular migraines, I may have numbness and tingling as well as dizzyness as part of my symptoms.sometimes even slight weakness, amongst other symptoms. With the Hemiplegic migraines however, I have true motor weakness, or flat out paralysis. It is a big difference from numb and tingly! My Hemiplegic migraines basically mimic a stroke. Sometimes I pass out, other times I have also had siezures.

I have never been Dxd with CFS, Fibro, or Lupus, though many symptoms I get mimic lupus especially. I get the face rash occasionally, More frequently I have severe joint pain and fatigue.(MSG free diet has helped greatly with the fatigue!) Though I do know a few of our members do have fibro, and one for sure has Lupus.

I would also recommend like others have, to find a good migraine specialest. He/She will be able to determine what type of migraines you have. If they determine you have Hemiplegic Migraines, there are precautions you need to take, and meds you SHOULDNT take, like DHE and Triptans, that are part of a normal migraine regime. Please get it checked out ASAP if you feel you may have HM. Do keep in mind one major way to tell the difference between a regular migraine and a HM is that HM always has true motor weakness and/or paralysis. Numbness and tingling and fainting does NOT nessairly mean a hemiplegic migraine.

Hope this is some comfort and info for you, and once again, welcome to our forum!


Tawsha

Pending diagnosis of migraine, it's possible that they are causing many of your fatigue problems as well, or adding to them.

I haven't been diagnosed with CFS but I have chronic Epstein-Barrs, which means I sometimes sleep up to 14 hours a day. Generally it's 10-12, but I've been known to pull some fantastic, lazy bed-only days when life gets rough. CFS is linked with EB, with EB being the possible cause and CFS as a possible result of prior or ongoing EB activity.

Many migraines have the added symptom of making you feel run down or lethargic, especially during prodrome or postdrome phases. With EB, it can compound my sleepiness in a major way. I'd imagine with CFS it would be much the same...Especially if your CFS feels "worse" o your headache days.

Also, you don't have to have aura to have migraines. Or, you could get another form of aura other than visual symptoms, such as olfactory hallucinations, audial hallucinations, or aphasia (speech difficulties). Aura isn't always visual. Sometimes I experience many different types leading up to the pain phase.

I can experience fainting, dizziness, and numbness with my attacks too, but like Tawsha said, it doesn't mean you have HM. I haven't been diagnosed with HM despite those symptoms, and I do not have paralysis or motor weakness whatsoever during an attack.

I hope you find some answers soon, good luck!

so much to all of you that have given me feed back.

The reason learning about the existence of something like HM interests me so much is that I have had two or three episodes of actual paralysis episodes that latter resolved by the time I got to seeing the neurologist.

Had episodes, gone to doctor immediately they want me into neurologist and or specialist but earliest I can get in is at least ten days. They run the tests you know the one where they stick a needle into the nerves and read electrical impluses. Doctors always find no neuropathy--but I already knew things were different the day we go into the doctor, I can actually move my limbs even if it is total pins and needles and just a little bit of movement. The fact that I spent days using a wheelchair or have to help getting to the bathroom after these episodes tell me that it isn't just numbness with a headache.

I would think that the numbness and paralysis weren't real or a just very bad panic attack except for the fact it has also happened in the exact same way for my older brother before. My brother and I have studied the issue and both arrived at the conclusion that we probably sometime time the future end up with an ms diagnosis.

So any descriptions and information you can give of either how HM or migranes in general effect these issues I would appreciate it.

thanks again from Mary in NM

Have we given you the link to the list of migraine specialist yet? Here it is:

Patient Recommended Migraine and Headache Specialists

Mary, I definatly would go find a migraine specialest off the link Nutcracker left for you! Many(read..MOST) neurologests are NOT familiar with hemiplegic migraines, thus cant diagnose them or rule them out. If your brother has same symptoms, that is even stronger of a case for you having Hemiplegic migraines. Mine seem to be SHM, where yours could be FHM. in other words, I have no family history of anyone else having these types of migraines, but you may.
Keep us posted hun!


Tawsha

Yes, ditto what Tawsha said about seeing a Migraine specialist. This is THE doctor who needs to be treating you if in fact you do have Hemiplegic Migraines. This is an expert who devotes their entire practice to Migraine disease and headache disorders. Neurologists may be fine doctors but treat so many different conditions it is difficult for them to be experts in any one area.