Migraine

Besides my more typical classical migraines, basilar migraines & what we think might be hemiplegic, I get another type of headache that doesn't seem like a migraine, but I don't know what it is.

After being exposed to vibrations, bright lights (flourescent for a long period, or some movies), I get "seizure-like" episodes- parasthesias that follow a particular path on my body, weird taste or smell (brief), nausea, some confusion, weird sensations or stiffness & contractions on right leg or right arm... Usually right after (although sometimes during), I get a intense, jabby headache, on left or right side (usually left), about midcenter, above the ear. If I touch my head, it feels tender to the touch. I don't think it pulsates or get worse if I lean over, unlike my migraines (although I don't want to do that). I usually feel very tired & worn out & want to sleepy, if I don't feel too zappy (which makes it hard to go into deep sleep). It last maybe a couple hours, unless it morphs into a migraine.

This all started this year (while my migraines are longstanding) after a series of having bleeding ulcers/loosing blood/ICU, having a Topamax reaction & Maxalt reaction & lots of physical and emotional stress.

When I went to the migraine specialist in June, he started throwing his hand up saying it doesn't sound like migraines & that I need to see a seizure specialist (plus due to my abnormal EEG). Even though I've had EEGs that have come out abnormal, no seizures were caught.
My seizure specialist said she doesn't think they sound like seizures.

Sooo...anyone have any idea what they are? They don't seem like tension or migraine or cluster, from what I understand.

I wish I knew. It's so hard trying to sort all this stuff out when it overlaps. I think your best bet would be to see a true headache specialist for another opinion, particularly since both the doctors you have seen can't seem to confirm what it is either way. It's not fun to go through the yes it is-no it's not ping pong game, that's for sure. My heart goes out to you.

I second droolie's suggestion to see a headache specialist. I know I have enough trouble distinguishing my headaches and migraines. I do get migraines where you describe - about midcenter, above the ear, but on the right. My head is almost always sensitive to touch if I'm migraining.

Wish I could give you more help.

Wow, Alexandra. Most of this, not all, but most of these symptoms really do sound like Migraine. You can tick off all the symptoms you listed that are pretty common with Migraine. The "contractions" and the type of pain don't, but the rest certainly do.

Did your Migraine specialist discuss and rule out Migraine-triggered seizures. Here's the diagnostic criteria:

1.5.5 Migraine-triggered seizure
Description: A seizure triggered by a migraine aura.

Diagnostic criteria:
A. Migraine fulfilling criteria for 1.2 Migraine with aura
B. Aseizure fulfilling diagnostic criteria for one type of epileptic attack occurs during or within 1 hour after a migraine aura

Comment:
Migraine and epilepsy are prototypical examples of paroxysmal brain disorders. While migraine-like headaches are quite frequently seen in the postictal period, sometimes a seizure occurs during or following a migraine attack. This phenomenon, sometimes referred to as migralepsy, has been described in patients with migraine with aura.

Sorry I don't really have more to offer you. In your place, I think I'd be looking for a second opinion from another Migraine specialist.

Please keep us posted?

quote:

Originally posted by Alexandra "Morpheus":
Besides my more typical classical migraines, basilar migraines & what we think might be hemiplegic, I get another type of headache that doesn't seem like a migraine, but I don't know what it is.

After being exposed to vibrations, bright lights (flourescent for a long period, or some movies), I get "seizure-like" episodes- parasthesias that follow a particular path on my body, weird taste or smell (brief), nausea, some confusion, weird sensations or stiffness & contractions on right leg or right arm... Usually right after (although sometimes during), I get a intense, jabby headache, on left or right side (usually left), about midcenter, above the ear. If I touch my head, it feels tender to the touch. I don't think it pulsates or get worse if I lean over, unlike my migraines (although I don't want to do that). I usually feel very tired & worn out & want to sleepy, if I don't feel too zappy (which makes it hard to go into deep sleep). It last maybe a couple hours, unless it morphs into a migraine.

This all started this year (while my migraines are longstanding) after a series of having bleeding ulcers/loosing blood/ICU, having a Topamax reaction & Maxalt reaction & lots of physical and emotional stress.

When I went to the migraine specialist in June, he started throwing his hand up saying it doesn't sound like migraines & that I need to see a seizure specialist (plus due to my abnormal EEG). Even though I've had EEGs that have come out abnormal, no seizures were caught.
My seizure specialist said she doesn't think they sound like seizures.

Sooo...anyone have any idea what they are? They don't seem like tension or migraine or cluster, from what I understand.

Well, I am still going under evaluations for seizures and sleep disorders. The seizure specialist said that my parasthesia and milder episodes that occur more frequently don't sound like seizures to her. The main suggestion on dealing with my frequent tinnitus & paresthesia is to "try to ignore them" - even though they affect my ability to fall asleep (normally, when I don't have them, I can fall asleep anywhere and I mean anywhere). Wearing jeans or wool and bright lights bug me, so I am stumped on how to ignore all this stuff.

The reason why the seizure specialist wants to continue evaluations is because:
a) my abnormal EEGs (sharps & slowing in temporal lobes)
b) my "arm flexor spasms" when my right arm curls up, stiffens and clenches is alarming to me, disrupts my sleep when it happens, and would make me end up in ER if it ever happened at work (they have a policy of calling 911 if any seizure type symptoms are witnessed in anyone- which is "just great")

The hope is to see if we can capture the bigger episodes of stiffness & spasms on a telemetry- they happen more frequently during PMS, but it's roulette in exactly what neurological symptoms pop out each month, so it may or may not be caught this time around. Also, I don't always remember or know if it happens in sleep except my muscles feel really sore upon wakening.

It doesn't help that I got a really bad migraine in the middle of the night of my 2nd sleep eval, so i had to take Midrin, because I felt like I was going to explode. Midrin makes me have very light (and long) sleep & makes me pretty dizzy, so it seems like that sleep eval was basically a waste. The whole point of another sleep eval is to see what happens when i have dreams late in the morning (if I don't get an episode or migraine, that's what i usually due).

The reason why I questioned whether those jabby headaches were migraines is because they don't pulsate, they last shorter than my other headaches, and don't seem food related, only stimulous related.

The migraine specialist was highly recommended by my GP after I had a bad experience with a neurologist here. The person has done a lot of research & teaching & has worked in the area coming up with alternative methods on how to help people w/migraines w/o using meds or minimal meds. I had a lot of respect for this person, but the doctor is in so high demand, the doctor isn't really appropriate to consult with on say a biweekly basis (via phone) or situation of an emergency.

I would go to another headache specialist, even though I'm frankly tired of seeing all of these neurologists, but the problem is that I can only drive up to 30 minutes (and not inner city driving) before my brain starts blanking out when I drive & feeling unsafe. That basically limits me to places that are either near me or accessable via public transportation. I think the only specialist listed here was pretty far from where I live. I know some people travel 5, 8 hours to see a specialist, but since I can't drive far & I'm lucky if I can get my partner to drive me 40 min each way & go to work late once every couple months, so I have no idea what to do.

When I was a teen, I was diagnosed with "migraine-seizure" disorder, but had limited treatment which was at best, inaffective & have had very negative responses to meds (Inderal, Tofrinal, Topamax, Elival, Maxalt) plus I can't take anything with sulpher, asprin or triptans, so it seems I should just stick with the Midrin for the severe ones, but truthfully, my daily quality of life isn't so good, I can barely have the energy to work part time and I feel like I am slowly loosing my cognitive functioning & becoming more & more AD/HD as time passes.

I just keep hoping someone will give me an answer & help me come up with some sort of solution before I throw in the towel. I know it doesn't sound terribly proactive, but I don't feel very proactive. I don't know how much more I can deal with all of this. I think it's great that it seems like many people on these boards are so persistant & thourough, but truthful, I am a bit scattered in real life & I am terrible with follow-through in general. I have a terrible time sticking to anything lately, even with the best intentions. I'm lucky if I can finish a book that isn't a graphic novel or a kid's book lately.

i wonder about the nerve that's there by your ear, what's it called, the Trigeminal nerve, doing something wonky. i don't know, i'm not a doctor and i don't play one on tv. i wish you the best of luck getting something figured out. wow.

Hi Millsy,

I have to admit, I'm really surprised about you having to tell an ER crew that your pain is something it really isn't. Whenever I go to the ER I always tell them what my pain is: constant pain in my left temple which hurts more when I move. I used to get treated with a "migraine cocktail"; tramadol, benadryl and anti-nausea meds. Now, thankfully, I get treated with IV magnesium.

That just plain stinks and it concerns me that they need reassurance, not to mention they need the proper symtoms to treat your migraine correctly. That must be so frustrating for you?!

quote:

My migraine pain isn't pulsating most of the time either. I usually tell the er crew it is pulsating anyway if they ask about the character of the pain because it seems to reassure them that it is migraine.