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

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awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/15/2006 7:56 PM (GMT -7)   
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!

Jennyo
Regular Member


Date Joined Feb 2006
Total Posts : 70
   Posted 3/16/2006 6:45 AM (GMT -7)   
Good grief---what a story!!!! I do not know anything about the drug you have been taking---sorry!!! Just thought I would let you know that you may want to post another thread asking if anyone is or has been on the meds you are on....And if they had any bad side effects...Sorry I'm not of any help---However I relate to your story because I just had my 1st seizure in Jan06 & I'm 30...with no prior health problems...My story in a nutshell is on Family Room 2006 pg 2....Take care---I'm sure you can get help & info off this site!!!
 
:-)  Jennifer 
 Therefore if any man is in Christ, he is a new creature; the old things passed away; behold, new things have come. (NASB)


awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/16/2006 8:18 AM (GMT -7)   
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....
April


Jennyo
Regular Member


Date Joined Feb 2006
Total Posts : 70
   Posted 3/16/2006 8:37 AM (GMT -7)   
Hang in there girl---I'm sure once you get the results of your EEG---you will have some answers, then they can start correcting it with meds!!!!Once I got the results of my EEG---it came back stating I have a seizure disorder-Epilepsy...I have been on anti-seizure meds since the day I had my 1st one--ER dr prescribed them...

There is hope!!!!

Jennifer :)
 Therefore if any man is in Christ, he is a new creature; the old things passed away; behold, new things have come. (NASB)


awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/16/2006 9:01 AM (GMT -7)   
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.
April


Jennyo
Regular Member


Date Joined Feb 2006
Total Posts : 70
   Posted 3/16/2006 9:52 AM (GMT -7)   
There is still hope---someone - somewhere will have an answer for you---you need to be able to dance --- and live your normal life!!!!!
Hope you get to enjoy the rest of your spring break....
-Jen
 Therefore if any man is in Christ, he is a new creature; the old things passed away; behold, new things have come. (NASB)


coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 3/16/2006 10:17 AM (GMT -7)   
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

awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/16/2006 10:22 AM (GMT -7)   
Can I just demand an MRI? Does anyone know? I talked to a doctor in NYC and he told me I need an MRI of my ears, brain, and spine. But I'm in IL. I sort of feel like a 5 yr old kid that everyone just pushes aside and no one listens to. I may be young, but I'm not stupid. I know my body and I know that something isn't right. Doctors these days just don't seem to want to listen. That is the reason I never go to them in the first place.
April


coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 3/16/2006 11:05 AM (GMT -7)   
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.
 
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

awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/16/2006 11:27 AM (GMT -7)   
I thought so too, but I don't get visual auras, or most of the other stuff. The most I've gotten before I started taking topamax was vertigo. AFter I started taking topamax I started getting tingling in my limbs and face, but I know that is a side effect of the drug, and I sometimes lose my balance just standing. But I am not quite sure why I stare and shake and do all this weird stuff now. I have noticed however, that right before it happens, I get an aura very quickly. It's like an electric charge that runs from the mid body and shoots both ways and makes me feel really sick and hot for a couple seconds. It happened really late last night as I was talking online to a friend. Then I couldn't tell you what happened. Usually I am somewhat aware of what my body is doing but not my surroundings, but this time I wasn't. I don't remember anything. I do know that I was typing though because I could see afterwards that i was typing jibborish to my friend and she knew something was up.
April


coffee 'n cigs
Regular Member


Date Joined Jan 2006
Total Posts : 69
   Posted 3/16/2006 2:14 PM (GMT -7)   
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?

awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/16/2006 9:01 PM (GMT -7)   
Well, I have to go where my wonderful student insurance leads me. ANd he doesn't know anyone in my state. And after I told him about what has been going on earlier, he told me that seizures were not his specialty but he wanted me to keep him updated. He's an ENT. Tonight I felt weird and had a laughing fit for about 5-10 min. I was coaching cheerleading. Well, supposed to be, but I was so out of it anyway all day. kept zoning out, but there were like 3 coaches there tonight. Try explaining to the kids later what is so funny that I can't stop laughing....
April


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 3/16/2006 9:47 PM (GMT -7)   
April,
I'm in IL. Can you access medical care in the Chicago area? University of Chicago? Rush? Northwestern?

emmie

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia


awight1
New Member


Date Joined Mar 2006
Total Posts : 15
   Posted 3/16/2006 10:16 PM (GMT -7)   
unfortunetely, I have northern IL student insurance in Dekalb, IL. We looked at the list when I went back to them after I refused to see the first neurologist and went all the way down it. I ended up at kishwaukee hospital in Dekalb, where they keep sending me when I go to the ER anyway...I had an option in Rockford but when we called them they said they didn't take referrals. Weird...I wish I had something in the Chicago area. But, I think I might find something out maybe on Tuesday when I go back. Supposedly, this is an epilepsy clinic or somehting. I don't know. The doctor seems nice. He was kinda surprised when I told him about the other local neurologist and his mistakes.
April


Briana
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/9/2009 7:02 PM (GMT -7)   
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.  :)
 

lotusblossom77x
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/30/2009 7:01 PM (GMT -7)   
I work for the Epilepsy Foundation and have a 23 year old daughter with a seizure disorder. She also has migraines. Topimax is a medication used to treat seizures as well as migraines so it shouldn't cause seizures, however, they may need to adjust the dosage so you have a theraputic level for you. You are describing what sounds like partial complex with secondary generalized seizures. You don't have to live the way you are. Go see an epileptologist. If your EEG was even slightly abnormal, there would be seizure activity. Epileptologist are specialists in dealing with all types of seizures (there are over 22 types).  You will need to have an over night EEG most likely.  If the topimax doesn't control the seizures there are other meds such as Depakote which is used for both migraines and seizures.  There are first aid issues with seizures that you should be aware about also, any kind of seizure activity lasting over 45 minutes carries with it the chance for brain damage, so you want to get this under control so you can resume your life. My daughter has been seizure free for 4 years now. She drives and lives a normal life so it is possible to get it under control with proper medication. Like I said, consult an epileptologist. I work for the Epilepsy Foundation North Central Illinois. I can refer you if you like. (I live in Illinois as well, obviously).
Here is the website www.epilepsyheartland.org   I am in the Peoria Office.  Good luck and take care.

MommyLee
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/2/2009 8:46 PM (GMT -7)   
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.

MISTYGIRL
Regular Member


Date Joined Sep 2008
Total Posts : 27
   Posted 4/4/2009 5:02 AM (GMT -7)   
 
 dear awight,
 I am sorry you are having such a rough time of it, I have had epilepsy for over 30 years
 starting when I was 8 years old, from a brain abscess and I have been on alot of medications for it,currently Tegretol and Lyrica. I also have migraines but I think since I have been on the Lyrica they have calmed down some  and I only have them when I have grand mal seizures. Waking up and going to sleep repeatedly is a normal thing to happen after a grand mal.I too think an MRI/MRA would be a good idea and yes you are the patient so you can tell your doctor that you want one.If Topamax did not work once there is no point in trying it again!So tell your doctor you would like to try something else,there are so many new antiepileptic drugs out there now that are also good for migraines.I also tried this medication and had one of the rare side effects of kidney stones so I never tried it again but Lyrica in conjunction with the Tegretol seems to have made myseizures lighter than they were and I don't have as many.But Tegretol also has the unpleasant side effect (rare) of SIADH or Hyponatremia (sodium deficiency)!A Video EEG is also an option,that is when they put you in the hospital for a week usually and attach leads to your head and watch you 24/7 but ask your neurologist about that.There are places that specialize in that sort of thing.
Good Luck
MistyGirl

smilingfire
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/15/2009 7:24 AM (GMT -7)   
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.

Animal Lover
New Member


Date Joined May 2009
Total Posts : 15
   Posted 5/10/2009 1:30 PM (GMT -7)   
cool  Hi, I'm new to this chat room and just saw your posting.  You poor thing.  I feel so bad that you have been ignored by STUPID doctors.  What...do they think passing out is NORMAL?  I hope you have found a knowledgable Neurologist by now.  I take generic Keppra after a grand mal seizure on New Year's morning this year.  It has 100% stopped the seizures.  I had queasiness for the first month, but am fine now.  I get the pills for $10.00 at Wal*Mart (after insurance).  My very best wishes to you.
Sue

kris10lee
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/9/2010 10:53 AM (GMT -7)   

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.


marialynn66
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/7/2012 10:32 AM (GMT -7)   
In 2007 my youngest daughter woke up one day with what appeared to be a nerve twitch to the right side of her face that affected her mouth, cheek and eye. We could find no cause of the twitching, a neurologist in Binghamton NY wanted to give her botox injections to mask the twitch, horrified by the thought, I declined. The tics did seem to calm down with in 6 months. Then almost a year to the day she began having a rapid jerking movement with her right arm and her head, also there were loud noises that she began making, and she would jerk inward from the waist. It was almost as if she was getting stuck in what ever it was she was doing. I know now after this long that they were most likely petit mal seizures. That went on for several months, she was seen at the Janet Weiss Hospital at Geisinger Medical Center in Danville PA. Where she was diagnosed with ....you guessed it, stress seizures. While under their care, her seizures became much worse in nature. Her fathers step mother (no blood or genetic relation) had epilepsy and infract had died in the middle of a seizure, I know what grand mal seizures are. My daughter is having grand mal seizures that are not controlled. She has been having them for 3 years now. After Geisinger referred her to Northern Tier Counseling services, the nurse practioner who has seen this from almost onset with Jessica and I both felt that they were way off. We both knew her circumstance and the text book treatment that was read in a medical review somewhere was not the answer, my daughter does not fall onto a black and white page.  She had no stressors in her life until this all began. She was not pushed to get good grades, better grades, excel in any given sport or activity. I then took Jessica to the epilepsy clinic at Penn State Hershey. Again, numerous testing, a week in the EMU, nothing... first I believe the induced seizures are not the same as a natural state seizure. She never received the HPV vaccine, I would not let either of my daughters receive it, there were no other students that was experiencing these things and I still recently verified that with the Tioga County NY health dept. Yes, we were living in Upstate NY when this all began.  Also, during her Sr yr in high school Jessica developed ataxia, she also has prolonged post seizure states, she can not stand for any real length of time with out feeling and sometimes fainting, she is cold, even when it is 90 degrees out (yes thyroid checked and functioning perfectly). I have seen her shiver into a seizure. The ataxia can last for a few days or a month, she talks like a child, forgetting words, the thoughts are there, her ability to communicate them is not and this can last for two weeks. In July she had a bad case of tonsillitis while away at school in Lancaster County PA. She suffered 7 seizures with in a hours time. By the time I made the 4 hour trip down she was in the ER at Hershey medical center, the ER doctor noticed seeming was wrong with her left eye, she had damage to her cranial nerve from hitting her head so much on the hard tile floor at school. She had no vision what so ever out of that eye for almost a month, thankfully it did heal and the nerve is fine now.  For almost 5 yrs my daughter has been going through what some of those girls in the Leroy NY area have, on in particular is identical to the tics that Jessica had and that would be the Sanchez girl. I watched the news clips of her and I could not believe I was seeing another child going through this, I thought we were alone, no one understood, no one knew what we were dealing with. I was not prepared for the rush of emotions that I have been dealing with since those reports have been aired. I have never once cried in the whole time my daughter has been going through this, I couldn't show her I was scared, I cried yesterday. Currently my daughter is not on any medication to control these seizures, the Laical that she was on did not help so the neurologist at Hershey told her to stop, she also said since we do not know what the cause is, she did not want to place Jessica on seizure med's because of the long term side effects and she is still developing. At our last appointment Dr. Acharya released Jessica from her care, we have no one taking care of her right now. She suggested Northern Tier Counseling as well.  I know my daughter and if I thought that it was not a waste of time, I would take her there, but it is not the cause. I just want her to be ok, I know all too well what can happen when she goes into a seizure, I want to sleep again at night.
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