Migraine

I've had hemiplegic headache-less migraines for 4-5 years now and last June, after a bad attack, I started having short episodes of muscle contraction in the same areas that I would get the auras - my left side of my face, left arm, left leg. These episodes would happen about once every 1-2 days.
Short story long, I just survived 4 days in Video EEG and my head is still itching from where they glued the electrodes! They didn't catch my nighttime seizures...mainly because nobody can sleep in a hospital. BUT my daytime episodes they said are some kind of dystonia or paroxysmal dyskinesia. (personally, I'd rather just stick with migraines and epilepsy - I can spell and pronounce those words.)

I haven't seen the movement disorder specialist yet and I'm really curious. I'm assuming my dystonia/PD is related to the migraine, since it occurs in the same places, on my left side. I'm wondering if I had a stroke - although my MRIs are clean. One of the epileptogists mentioned that possibility, though.

So my question is:
Has anyone else developed dystonia of some sort after migraine w/aura?

I've been googling, and there doesn't seem to be a whole lot of info of PD's, let alone its relationship with migraine w/aura.

Thanks for any info!
Steph

I'm sure someone will be along soon to help you with your question. I guess I have experienced it when I've had a drooping face, but I'm not sure.

Sorry, Steph. Not a clue. I'd say this is an excellent question to ask the movement disorder specialist when you see him (or her). When do you have that appointment?

I have the opposite problem from you. My dystonia is a migraine trigger and also a cause of chronic tension-type headaches.

Let us know what the doctor says.

Gretchen in Mississippi

Yes, yes... I could have written your note, except most of my episodes happen on my right side! They get worse when I ovulate, have PMS or have asthma attacks. I get a lot of tinnitus and parasthesias prior to the stiffness/contractions, plus other aura symptoms (smells, tastes, feel the room is tilting). I get weird jabbing pain in my head - usually on the opposite side that I get the sensations, I think & sometimes it may morph into a short lived migraine (about 4 hrs I think, compared to my normal migraines that last between 1-5 days these days, & up to 3 weeks in the past year).

My doctors (GP, sleep specialist, migraine specialist, epitologist) still don't don't know what is going on. My GP and migraine specialist thought I have partial seizures. My migraine specialist felt my case was too complicated for him to deall on his own. My sleep specialist is still investigating (she thinks it's probably a combo of things)... my seizure specialist doesn't think I have seizures, but a sleep disorder and/or migraine disorder...

My neuropsychologist thinks there might be some neuro-developmental issue & some impairment in my right hemisphere (in particular right frontal, temperal & parietal) lobe due to my cognitive tests. There seems to be some inconsistancies in my childhood development, plus there's some delay in my left side motor functioning, even though I am dominent on my left side for many things (my right hand used to be much stronger prior to an accident to my hand years ago as an adult).

I was diagnosed with "migraine-seizure" disorder when I was an older teen... due to sleep problems, collapsing (but not loosing consciousness) and waking with headaches & some other issues. Was on Inderal, had wicked hallucinations and nightmares that got worse (and continued to have for years & years afterwards) & my headaches didn't get better. Diagnosed w/functional heart murmer, so I was taken off Inderal & then I had some severe reactions to some other meds. Never saw doctor again (didn't get along w/him).

Started have one sided weakness in my early 20s, mostly triggered by MSG I think, because it would happen after eating at Asian (fusion) restaurants). Then about 2 years ago, the one sided weakness started happening more frequently. Last year, I vomitted apparently 60 cc of blood - about 2/3 of my blood & was sent to ER/ICU... became severely anemic. Subsiquently put on Topamax, got major side affects right away- dosage increased from 50 t0 100 in one night & had the "worst basilar migraine ever for 3 weeks or so" & was told to take Maxalt. Day after I took Maxalt, my left arm & then my right arm started stiffening and curling up, and had painful contractions... like as if I had cerebral palsy. It was at work and I don't remember much, but I was ushered into the school nurse's room & think I was upset & couldn't speak well... sent to ER... my fMRI & CAT scans were also clean then (this was the last time I had an MRI & CAT scan). Since then, I have had similar, less severe episodes. They are worse in the daytime if my sleep is very fragmented - now that I sleep more because I work only part time, my daytime episodes aren't as bad. I still get parasthesias, dysthesias, tinnitutus & auras frequently & the stiffness & curling at night.

I also thought maybe I had a stroke at the time, even though scans were clean. I had some intense hemi incidents in the following months & would have times when I would have weakness in my right arm and leg for a couple weeks afterwards (couldn't bowl, hold a mug or a bowel for any amount of time, knit, etc.). Since I have worked in a Coma and Brain Injury Unit in the past, it seemed like I had the symptoms of a mild stroke, but I coulsdn't get any answers.

I noticed that I get "silent" asthma attacks when I have them in the day- my chest feels pressure & I feel like I can't breathe, but don't always have my coughing asthma attacks. At night, I feel like I wake up & can't breathe, & often my arm is curled up & my head hurts... or I feel like I am vibrating (asleep or awake). Sometimes I get kailidescope or psychodelic hallucinations during all of this... I also get hypopomic & hypnognic hallucinations & sleep paralysis & vivid dreams, but that's separate.

I was just diagnosed w/ mild sleep apnea (during the sleep study when I think I curled up & got a severe migraine), but my sleep specialist thinks something else is causing all my sleep issues, so I am going for more sleep evals (PSG & MSLT) & holding off treating the apnea and migraines until I get evaluated for everything...

It's interesting you mentioned Dystonia, because one of my friends who's training as an alternative health practioner asked me if that's what I have... I don't know. The very little that I was able to find on the internet mentioned that nocturnal dystonia may be just a fancy word for seizures that come from a deeper part of the brain & don't don't get recorded on an EEG or PSG. I had 2 telemetries (talk about itchiness & sores on my head! I had pimples all over my scalp afterwards) & the first telemetry didn't catch anything because my menstrual period decided to be uncooperative & I got my PMS late that month. But I did fall asleep frequently during the day becaus I was soo uncomfortable & limited.



Have you had a sleep evaluation? Do you have asthma & GERD? Do you know what your triggers are? Do you work outside the home? I worry that once I am able to get a full time job again, my episodes are going to happen more frequently during the day. After I got fired from my teaching job, I was unemployed & when I attempted to work full time again, my symptoms started to get worse again & I had to go from 35-40 hrs a week to 12-20 hrs a week. I'm barely coasting as it is, but I need to take a more substantial job next year & just hope I won't crack up again because it looks like the eval process is going to take forever & I'm nowhere near a treatment plan (I'm so disorganized & unmotivated I can't even seem to follow the original recommendations to me).

How did your doctors come to the conclusion of dystonia?

Let me know how everything goes, because I'd want to pass this information to my doctors if that is ok with you.

Thanks everyone! I don't have an appointment with the movement disorders specialist yet - I have to call the neurology office to make one. They gave me the number when they released me from the hospital after the VEEG - I'm going to wait til next week to make sure she gets the videos of me grimacing and stuttering. (Oh boy.) I hope I can get in soon - they took me off of Topamax and I have more PD episodes now than before. I REALLY am looking forward to talking with her to find out exactly what might be going on. All this is at a teaching hospital, and the offices of all the different flavors of neurologists are in the same building, so I hope that prevents me from being bounced around.

And thanks for your info, Alexandra. You're going through tons. :-( I'm sorry to hear that. Some of it does sound like me, with the combo of stuff going on. And the auras- I get a metallic taste sometimes, but usually I get really spacey and a feeling of disorientation, sometimes a little sick feeling in my head or stomach, right before I get the muscle contractions. My triggers are caffeine, alcohol, neon lights, and some fluorescent lights (those compact fluorescent energy-saving bulbs hate me). The drs decided it was dystonia because nothing showed up on the EEG when I had the episodes. I can't wait to ask the movement disorder specialist if she thinks this PD is chemical or electrical in nature. AND AGAIN - if and how this stuff is related to my migraines. It has to be, I think.

I do work outside the home -- it's tough being in the flurorescent lights at work, but I manage. When I feel something coming on, I go to my office and scowl at anyone who comes in. (I can't help it - scowling is part of my attacks.) I don't have asthma and I don't think I have GERD. Just migraines, paroxysmal diskenisia, and nocturnal focal seizures. With arthritis thrown in. :-)

Is it possible to have a little stroke that doesn't show up on MRIs? That's what I'm wondering and that's another question that I'm going to corner the movement disorder specialist with. I have so many questions for her!

I'm going to 2 teaching hospitals myself- you'd figure that some of the brightest minds in the States would figure something out?

with the exception of the scowling & grimacing, your symptoms sound like mine as well...at least I don't think I do that although there have been times when my S/O asks why I make a weird sound or weird words or something... my guess is that nothing seizure like was caught the second time or my seizure specialist would have called me back when i asked if I have follow up apointment or not & I received no call. similar triggers (caffiene is definately a stackable esp when I have PMS/periods), red wine is the worst, and bright lights- well, I think I'm part Mogwai...

FYI, for about 2 months during the time I titered off of Topamax & then was off of it, my episodes were rampant! I was waking up every 15 minutes at night, if I remember correctly (with my memory, who knows). If it's any consolation, I've been off of Topamax for 10 months & my episodes are not as "severe"/ intense except when I have bad PMS or bad external factors (the week after my telemetries & week after my sleep eval, I was all messed up). I'm not knocking Topamax, as I know for some people it's been a lifesaver & extremely beneficial, but I think for those of us who have neuro-developmental issues or previous complicated neurological problems, Topamax did something really weird, imho...

my guess is that the severe blood loss/ulcers, plus Topamax, plus Maxalt cause further brain damage on my part- while I've always been weird (haha), I feel like I've regressed- I act like some of my former clients & students- but since I can string a bunch of sophisticated sentences together-usually- it seems like I am more together than I really am.

If I didn't work in education/mental health field, I would probably have more leyweigh at work... unfortunately, I've worked with really young or highly needy children, so I'm constantly on edge when I feel fuzzy- and I don't dare say anything at work. I have no other marketable skills beyond my fields (being AD/HD & a creative/artistic type) & jobs are really cutthroat here, so I'm pretty stuck professionally.

One can't tell if I get parasthesias (unless I yell "owe!") or get a little fuzzy, but my more severe episodes are definately noticable.


As for GERD- main symptoms are sour taste in mouth when waking up, & nausea upon waking... gas/sourness after certain foods... I got diagnosed w/it when my gastro doctor check for my ulcers & saw I had a hiatal hernia. I take prilosac for it.

Hi,
Although my experience was very different from your current one , I did suffer from dystonia for about a year, so I thought I would chime in.
I have a history of classic migraines and now suffer from daily headaches. I developed cervical dystonia (neck). After finding out the name of what i was experiencing, I did some research and discovered a that there seemed to be a connection between lexapro, a medication i was taking for depression, and dystonia. When I returned to my neuro, I asked about this. She told me that there was no relationship and not to stop taking the lexapro. I stopped it anyway, and my episodes stopped. I'm still told by doctors that the medication couldn't have "caused" my dystonia, but that it sent my neurologically sensitive body over the edge. Since I do have other neurologically related issues, I guess this is probably true.

The experience was very frustrating for me, mainly because of the lack of information (it took me about 11 months of seeing doctor after doctor, specialist after specialist, to have my "muscle spasms" named as dystonia, although every doctor told me that they believed they had the answers to help me) It took my own research and going against doctors orders to resolve the problem.
It sounds like your dystonia is very different from mine, but if I can provide someone else with more information than I had, that would be great.

I truly wish you the best, I know how frustrating this can be.

Nikki