Are "COMPLICATED MIGRAINES" common in CFS/ME

[sleepy237]

Hi guys, I have FM/CFS/ME acute symptoms three years. I am having MRI of the brain tomorrow. I have been having migraines that are causing facial numbness and affecting my balance/walking. I also have numbness(facial) that occurs without the headache. I saw hemiplegic migraine on computer screen at doctor visit and feel that they are listing symptoms as they want to (as a cover) if you will. If my MRI is clear then I will have no answer as to why these events happen. I know something is occuring but will there be evidence on these images. I also have PTSD and have just been discharged by the CFS specialist as he says I have to heal, and that he is not able to make progress (Progress?) with me until that time. I have had PTSD all my adult life. If it was easy to heal, I would be healed right.
I have had no remission in three years. Each time I attempt at pacing, I will end up sleeping marathons. My heartbeat has never been so irregular and I am just at a loss. I have plenty symptoms of dysautonomia and I also have Hypermobility Syndrome.

When will the world of research pay attention to the thousands of sufferers living in their own private hell & if no single cause can be found, when will they attempt to treat the myriad of disabling symptoms.

Wish you all the best for recovery and a good 2011

 

[Esther12]

I started getting migraines with vertigo last year. Now I just seem to get little attacks of vertigo at random times.

I've just started seeing a neurologist who may be useful, may not. I guess we'll know when he's done some testing.

I'm not sure if an MRI is likely to show anything up unless you're having an attack at the time.

Sorry not to be of any use, but it's something I'm only just looking in to myself. Have you tried using a balance ball to help with balnace issues? I'm not sure if I've found it helpful.... maybe?

The symptoms of the migraines I've suffered from seem like an intense form of my CFS (with some additional visual stuff).

PS: Your CFS specialist sounds like a bit of an arse. If you were healed you wouldn't need them!

 

[Nielk]

I suffer from complicated migraines most of the time.
I wake up with it and go to sleep with it.
I had an MRI done a year ago and it didn't show anything.

These headaches are very treatment resistant.
With me it feels like a combination migraine/sinus pain.

When I take 2 Benadryls and 1 Vicodin, I get a little relief.

Neurofeedback used to help me but lately even that gives me no relief.
Now I'm trying an acupuncturist hoping that it will help some so that I don't have to be drugged up all the time.

I empathize with your pain.
Good luck,

Nielk

 

[CBS]

My atypical "complex migraines" of over six years cleared up after about three months on acyclovir for a chronic HSV-1infection (had facial numbness and brief Bell's palsy like episodes). I had to lower my acyclovir dose and they started coming back. My acyclovir dose is back up and my headaches are nearly gone again. Hmmmmm?

MRIs never showed anything that could account for the headaches.

 

[Sallysblooms]

My migraines were from hormone imbalance, goofy docs were clueless for many years. I finally have a doctor that actually did know how to balance them. Even hormone specialists were clueless until I found this doctor. They are GONE now after many years of numbness, throwing up, etc.

My CFS and POTS do not give me headaches. Just the hormone imbalance so all is good there. You can check that out with blood tests.

 

[meadowlark]

In 1983 I began to get what seemed to be a daily hemiplegic migraine, meaning (as you know) migraine pain in the head and also down one side of the body. My limbs were numb, tingling, partly paralyzed and inflamed (sometimes with a repeated stabbing) all at once. But my doctor and I knew that what we were calling this "hemiplegic migraine" was not the genuine article. One factor was too odd to overlook. Whenever I had a fever, the migraine (and all the hemiplegia) disappeared immediately. Literally. In an instant. Then, when the fever died, the hemiplegic migraine began again, quick as a light switch. That's not normal.

As it turns out, I was suffering the first stages of slow onset ME/CFS/Fibro. It was a long, painful road, and today I am diagnosed. fullblown--and mostly bedbound. I also have the same numb/tingling/stabbing inflammation in my limbs, but not down one side. I have it all over, including new places like in the tissue between my fingers. And it often happens independent of head pain. In other words, it seems that what I first thought must be the "torso" part of a hemiplegic migraine was actually fibromyalgia. I suppose it is all part of one massive circulation problem, as I have head pain, limb pain, and extreme vertigo and orthostatic intolerance.

I would discuss all this with my original doctor, but he was diagnosed with ME/CFS a year a year after I was, and has had to quit his practice. God, I miss him. He was the most imaginative and curious doctor I have ever had. It was due to his concern (and my dentist's--she saw thrush on my tongue) that I was sent to the infectious diseases unit at Toronto's Sunnybrook Hospital so they could look for ME/CFS.

Without my original doctor, I was forced onto the merry-go-round of one new clueless physician to the next. I also went through the merry-go-round of MRIs concerning my migraines (I've had close to 8,000 migraines. By the way, they still often affect my balance, as does vertigo.)

Doctors who make you sit there, gritting your teeth in pain while they check off their hundreds of boxes often drive me to tears. And I found neurologists to be arrogant in the extreme. When I explained the fever/migraine connection, a neurologist told me "I'm sure I don't know anything about that" and "I have my own protocol." Then .... wait for it ... he implied it was all in my mind. I had kept a journal for fifteen years, recording fevers and migraines, and as a former journalist (in fact, I began my career as a fact-checker) I made sure I wrote as clinically as I could. He smiled and told me "getting upset about your pain only makes it seem worse than it is" and "people go looking for causes that aren't real."

If it's any comfort (and I'm not sure it is), I can attest that fibro and other strange bodily pains can indeed resemble hemiplegic migraine, so if your doctors are casting about for explanations you know are not true, at least that one isn't as preposterous as some others. And imitrex, prescribed for that supposed hemiplegic migraine, did and still does help my head, facial and limb pain. Accupuncture helped part of the headache, and did much for my peace of mind. Unfortunately, I can no longer afford it.

I really sympathize with what you're going through. The challenge is not only finding somone who will help you, but someone who won't bury you with gobbledeegook.

Hang in there -- if only to spite them!

 

[WillowJ]

Complex migraines run in my family. I'm always struck by the sign and symptom similarity between ME/CFS and complex migraine (balance problems, dizziness and/or vertigo, language problems, visual disturbance, sleep disturbance, confusion/brain fog, muscle issues including stiffness and cramping, sensitivity to light/noise/smells/commotion/vibrations, nausea and so on... and of course, severe headache in most cases).

Migraine aura has not been well studied (many migraine sufferers are women and migraine is sometimes thought to be MUS), but according to what I have read in a scientific magazine, it seems not significantly different from an extended partial seizure. Migraine does not show up on standard MRI (maybe fMRI or PET scan if currently happening during the scan).

(Common migraine, which accounts for 90% of migraines, has a much more limited profile of symptoms: severe headache, light/noise sensitivity, nausea.)

Evidently the pathologies are similar between migraine and ME/CFS as well (vascular degeneration, hole in the heart): http://www.msnbc.msn.com/id/29288759/ns/health-pain_center/

CCC says migraine and ME/CFS can become loosely associated. I think the association may be much closer.