seizures and migraines, but don't know if it's epilepsy

Hi

I'm new to this forum, but I've been looking for some place to get some opinions.  This is my story.  I am 23 yr old dance major in college in IL, and I was totally fine.  I'm a very healthy person.  Until Jan 2, 2006.  I started to get a migraine at the base of my head.  And it didn't go away.  I had headaches like this 3 years ago, but the doctors in Baton Rouge told me they were tension headaches and it took a solid year for them to go away.  I had vertigo w/them.  So this time, after 3 days of continuous muscles spasms in my head, vertigo came, too I was w/a friend and she was worried. I vomited once and was very nauseous, and very lethargic for those 3 days.  She took me to the doctor and he told me it was basilar migraines and he gave me a shot in the ass and a lot of ibuprofen.  I went back a couple days later, same cocktail.  Went back a day later, same thing and he referred me to a local neurologist.  This guy was very quick, just said it was migraines (2 weeks passed and no relief) so he put me on topamax.  Told me to increase 25 mg every week.  till I got to 100mg.  I'm one that doesn't even normally take otc drugs for regular headaches. 

So I followed instructions.  Did what I was told.  School started back up mid-January.  I was very sick for dancing and sat out quite a bit.  Teachers very worried about me, but I assured them I was alright.  So the day I got to 100mg, I was in modern. She was showing us a combo, and I was holding the back of my head like I always do cuz it hurt.  I started hyperventilating out of nowhere.  I've never done that before in my life, but I noticed when I got to 75mg that I started doing that for some reason.  But before I could stop.  This time I couldn't.  I watched myself in the mirror till I passed out.  HIt the floor like a ton of bricks and scared everyone in the room.  They called 911.  I was humiliated cuz I was fine afterwards.  Got taken to hte ER and was fine, except for the headache.  THey found nothing wrong so they send me home.  Couple days later, I hyperventilated and passed out on campus again.  Went back to the ER.  Was fine though and went home.  had a neuro appt. and passed out a frien'ds that day so I asked him if the topamax could be causing me to hyperventilate.  HE told me no it was my nerves.  So I immediately started tapering off and quit seeing him.  I passed out 8 times in that 2 weeks. 

I was down to 50mg every other day for a week.  Meanwhile went to normal doctor at school and he told me to continue tapering off to 50mg every other day.  I took one pill on a Sat. so I didn't take one Sun.  I was judging a tumbling competition, but was up really early at 5am and was exhausted and stressed cuz our schedule was jam packed all day long w/no breaks.  by midmorning, I felt weird.  Got a sick feeling.  Then was very light headed and got really really freezing cold and was shivering, my whole body.  I was staring.  Other judges noticed and asked if I was alright and i dind't respond so they tried to move me and as they stood me up, I passed out.  As I woke up, my hands contracted, my entire face was twitching like mad, and I was still shaking head to toe.  Couldn't lay flat, either cuz my leg muscles also contracted.  After 10 min. everything relaxed again and I was groggy.  Didn't take any more topamax either.  Couple days later, had another "episode" in class at school.  Same symptoms, but just didn't pass out this time.  No one noticed, but I went immediately to health services and told my doctor what happened and he told me they were seizures.  Could be from my migraines, but he referred me to another neurologist. 

The next week I went to the neurologist, he put me back on topamax, but at 50mg.  I had a couple more seizures that week, but they were very mild compared to the first couple.  All I do is stare and zone out and shake a little.  Then everything relaxes and sometimes I pass out at the end, sometimes I don't.  A couple weeks ago I ended up in the ER again because of a seizure.  Same symptoms as the first one while at school working a play.  My hands curled up and were stuck for a very long time, I was shaking, out of it, etc.  BUt didn't pass out.  The ER found nothing wrong and let me go.  3 days later, I had to go back to the ER because I had another seizure in my volleyball class that I wasn't participating in because I was exhausted still from the seizures I had over the weekend.  I passed out at the end, too.  They let me go again and i went baack to my neurologist the next day.  He gave me an EEG the day after that.  Dont know results.  Last week I started having a small episode every day.  Just the staring and shaking, then relaxing.  I've been kicked out of all my dance classes after ER trips for a week.  And volleyball was the latest to be kicked out of.  Got back into them eventually, then just recently got kicked out again because teachers are all scared of me and don't want to deal with me so they sent me to the dean to persuade me to withdraw from class.  I opted not to.

I'm on spring break right now and going back to the neurologist next week.  In the meantime, the seizures or whatever they are seem to be increasing in frequency!  multiple times per day since spring break started.  I don't understand what is going on.  THe migraines have been pretty hard core, too.  I've noticed when I'm exhausted or stressed, it triggers a seizure.  Monday I worked out pretty hard but normally would be able to handle it.  With everything going on lately, though I guess I coudn't handle it.  I was with a friend and as soon as I sat down I started staring and my arms were shaking.  She sat w/me till I relaxed.  I couldn't get up cuz all my muscles were week and I was like groggy and dumb feeling afterward.  She sat down again and I immediately went into another seizure.  THey only last about a minute though.  Then she had to hold me and help me out.  I was really out of it.  She took me to her place and i started laughing hysterically, really hard and couldn't stop.  Nothing was funny.  I just couldn't stop.  It was uncontrollable and lasted a good 10-15 min straight.  Then I laid on the floor and started to fall asleep w/ibuprofen in my hand for the migraine, too exhuasted to take it. 

THen I had another seizure and was shaking again.  Then went back to sleep.  Did that a couple more times that evening.  I kept waking up but was too weak to move.  NOticed my toes would twitch and one leg would contract and get really really tight for a couple seconds, then relax.  Same thing would happen to an arm and then stop.  Then a random limb would start shaking.  that happened a lot, too.  THen I went back to sleep.  The next morning I had another little seizure when I woke up but it was probably 10 seconds.  then I was fine.  I'm always semiconscious when these happen.  Just zoned out and staring, or half asleep if my eyes are shut or whatever.  I know it was from totally overdoing it with working out.  But I'm not sure why I am having seizures because I've never in my life had them before.  I had spinal meningitis when I was a premature baby, but had no lasting effects from it.  I don't think my EEG was abnormal because the doctor gave me a note to get back into volleyball last week, though they didn't tell me anything.  I think this may have something to do with being on the topamax and want to know if anyone else has had any similar experiences with the drug??  Or I wonder if it could just be like adult onset epilepsy or something.  OR just due to the migraines like 2 doctors I've talked to think.  I'll find out more next week from my neurologist, but I want to hear anyone's opinion on here!

I've been trying to find off this site. that's all i've been doing lately. I can't find anything about topamax causing seizures, except when you immediately cut off of it, which I have not done. so, I don't know what my problem is. I do know however, that the first 8 times I passed out was probably due to the drug and that is shat my 2nd neurologist told me becuase he said my first neuro had me taking too much too soon. And hyperventilation is on the list of RARE side effects, that my first neuro apparently didn't want to acknowledge but hello...i can read. Anyway, thanks for the reply. nice to have someone to talk to since everyone at school thinks i'm a freak. I'll check out your story. I almost made it all day yesterday w/o having a seizure. just got those funny feelings a couple times during the day. then 2 min. before midnight, I had one. It's so weird when it happens becuase it's like an electric charge runs through me up and down right before it happens, but at the same time I feel really sick. Last night though, I couldn't tell you what happened. Usually I can....

Well, I had an EEG w/the first neuro before I started having seizures, just migraines and it was fine I guess. I'm assuming this EEG was fine too since they gave me a note to get back into vb and they didn't tell me anything. The only thing that was kinda weird was that when they turned the strobe light on and I shut my eyes, they started twitching, and my arms started shaking and then my hip flexors contracted and that continued through the hyperventilation. but it wasn't bad. the tech noticed though. it didn't happen while my eyes were open w/the strobe light though, so it was weird that it happened after i shut them. But I am on an anti-seizure med. That's what topamax is. Except that I have been put on it for daily migraines and I'm on a very low dosage. I don't know. I just think it's really weird, all that's been going on. I also think it's weird that out of all that has happened, no one has given me an MRI either. All the ER did was multiple CT scans, I had to tell them after the 4th visit to NOT give me one again. THey were all fine and so were my millions of blood tests. I'm convinced the ER docs in my farm town are all monkeys though Hopefully my neurologist won't just tell me next week that I'm crazy.

Topamax made me faint. I, also, hallucinated and heard voices on it. The tingling was excruciating. My seizures (tonic/clonic) remained the same. No better, but no worse.

PLEASE have an MRI. There is an answer to all this.

God bless you.

c&c

Awight, I have never heard of basilar migraines, so I Googled. It does sound as though this might be the right diagnosis. Particularly since your EEG didn't show seizure activity.

http://www.chiroweb.com/archives/11/18/02.html

The aura phase usually begins with a bilateral disturbance of vision that may occasionally progress to temporary blindness. Visual symptoms are followed by varying combinations of ataxia, dysarthria, bilateral vertigo, tinnitus, changing levels of consciousness, bilateral paresthesias of the limbs, face, and tongue, and quadriparesis. Other brainstem- related symptoms less commonly noted include nystagmus, diplopia, and decreases in hearing.

best wishes to you,

c&c

Awight, would it be possible for you to get in touch with that doctor in New York, tell him what happened last night, and ask him to recommend someone in your area?

April,
I'm in IL. Can you access medical care in the Chicago area? University of Chicago? Rush? Northwestern?

emmie

Hello awight1

   I just wanted to let you know you are not alone!! I have too been taking topamax and I'm now experiencing what you are experiencing.  However I was in a recent rollover car accident and previous to that I have been having severe migraines and my doctor subscribed 25 mg topamax to me I only had the tingling in my hands and toes symptoms until recently.  I ended up have a seizure or seizure like symptoms and was brought to the ER.  Yeah they took alot of blood and did a CT scan and everything looked normal except the fact my pupils didn't react as fast as they should.  They pumped drugs into me, told me to get an EEG and an MRI to see if there is any nerve damage, subscribed Vicodin to me (which made me itch like a dog with fleas so can't take anymore) and then discharged me when I still had my migraine.  Since then I noticed I have been twitching alot and I space out for no aparent reason and I just feel awkward and my migraine didn't go away. However, I know I shouldn't say this but I'm going to my migraines get bad...like I wanna die bad pain in the neck and if I tap my head against the wall it will explode like a watermelon.  So I decided to take things in my own hands until I see the doctor, I reached out to a couple of friends and was able to get um.......Chronic (pot, weed whatever you wanna call it) and no I'm not a druggy I personally never believed in the stuff however I was desperate and willing to try since the vicodin was out of the question.  I tried it.....Next day my migraine was almost gone to the point where you feel that it's still there and just waiting to jump up and start hurting again, so I avoided things such as loud music, light, bumping my head etc. and my migraines completely gone even though I'm taken precautions and my "seizures" have calmed down a bit why I hyphenate is because the doctor says that I pass out from being in soo much pain and then my body convulses which make it look like a seizure.  You may think I'm crazy but I'm just throwing it out there and no you don't have to get high everyday just when you start feeling it and I would just highly recomend to buy from someone you trust. Or since you dance and do Vollayball ask your doc about maybe prescribing something that contains THC I believe it's called which is legal and you will be able to still dance and play sports.   I hope this helps and I'll keep you updated on my TESTS.  :)

 

Im 25 and I have a very similar story. I started getting light headed and dizzy and started fainting 3mths after having my son. It progressed into fainting with laughing spells, convulsions, going limp, being too limp to walk or move, alot of the same things that you described. Multiple times a day. One doctor said I had galastic epilpsy (laughing seizures) another said psuedo seizures (non epileptic seizures brought on by mental and physical stress to the body that the mind cannot process. It gets released through seizures/episodes). That was 3 yrs ago. about 2 yrs ago i started having migrains. they became so bad i am now on topamax. i was told it could lower blood pressure so get up slowly and could cause tingling in fingers and toes. however, i already had tingling and numbness in my extremities so its not like i would have noticed anyhow. My seizures started before the migrains so the topamax is supposed to help both. the one good thing about the topamax is it helps you lose weight. It can cause drowsiness, however, my psychiatrist says that it is also used as a mood stabilizer, weight loss (in high doses), seizures, migrains, and other mood disorders that dont respond to other medicines. Im not a doctor but i would think that it is possible that with your constant change in motion with dance, the topamax may interfere in respect to lowering your blood pressure??? just an idea??? maybe you could ask about it. You may want to ask about the psuedo/psychogenic-seizures also???
hope this helped.

Hi there,

There maybe some merit in the exploration of Basilar Migrains / Silent Migraines. The Basilar migrains can cause pain in the occipital area, can induce many "seizure" type sympotoms such as twitching eyes, loss of use of muscles / muscle weakness, shaking, loss of memory, loss of speech or slurred speech, etc. This doesn't necessarily need antiepeleptic medications as sometimes that will increase the severity of the symptoms. Sometimes a simply anti-inflam. will work well. Massage is known to be a really effective treatment component as well.

I know that this is 4 years after you posted your post, but I hope that you read this.  Your story is almost identical to mine.  I was a triathlete, then I ran a half marathon with menigitis but didn't know it.  I have never been the same since.  I stopped all sports, and I now suffer from severe migraines with seizures.  I had an EEG done and it was normal, about a week ago I had seizures from 7pm till 1am and I don't remember a thing.  I was finally taken to the ER at 1am when I "woke up" about 1:15am.  They say my seizures are non ecileptic, which makes them emotional.  That way they can blow me off.  They don't put together my headaches with the seizures and that only frustrates me.  I am on Topamax and that has helped.  I was off of it for a month because I started a new job and we didn't have insurance yet.  And when I did get back on the Topamax it was too late my migraines and seizures were in full force.  I am also on a small dose of an antidepressant and imetrex shots.  All of that is helping me so far.

I does get so frustrating that you can't get an answer about what is going on.  You aren't making this up, and it makes you feel so embarrassed.  Plus you feel bad for the people around you because they are scared.  It is a vicious circle, and the stress of it makes the headaches even works.  My advice to you is ask your doctor what is causing these headaches. Don't ever give up. These conditions you are having are real. And try to keep living your life.