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Hello everyone, my wife was recently diagnosed with seizures and as with im sure most of you are, are trying to find a way to beat this unforgiving condition. a little backround in Sept 2011 my wife was driving to work on the highway and had a gran mal seizure at 65+ miles an hour, somehow by the grace of god the SUV went off the road and rolld to a stop on a smll gully with no injuries to her or the vehicle. an 18 wheeler which was directly behind her was able to stop and pull over and go check on her. whne he and another driver got to the vehicle and opened the door she was in the middle of her grand mal. They called the state police and the Police called me. So starts our adventure together. she has been on two differnt meds since this started the first caused her to lose so much weight so fast that we got very scared, the second, and please excuse me but I am very bad with drug names, she has been on for a month and is at what is considered a med dose is starting to have severe reactions to it such as blurred vision crossed eyes constipation and other things, we called her old doctor who prescribed the meds and they told her to go down one step until we see our new doctor ( we changed doctors cause we lost confidence in his ability as nothing had changed and waiting in a a waiting room 45 mins past your scheduled appt just to be placed in an examining room and having to wait another half hour before the doctor saw us was for the birds) we are now scheduled with University of Pittsburgh Medical Center on Jan 20. if anyone has any insight on UPMC Pitt can you please share it. for the past three months not a day has gone by that I havent wished that this wouldv'e happened to me and not her. Now my only goal is to get it fixed so we can lead a normal life together and see her wonderful smile all the time

Comments

Re: New To this

Submitted by ExNewsGrl on Wed, 2011-12-28 - 15:40

I don't have insight on that specific hospital, but I was diagnosed 25 years ago at age 23, when I had a grand mal seizure. (Fortunately, I was home at the time.)

I just wanted to give you encouragement - be patient and be proactive with medications. If she doesn't like how she feels and you don't like how a particular medication makes her act, tell the doctor and insist on something different. I recently began seeing a new doctor and he tried to change my meds - and whatever he prescribed made me feel awful. I could not function after one dose. So we scrapped that one and are carefully monitoring my tried-and-true medication.

Be aware of the side effects and the symptoms of overdose - I was overdosing on my medication (hence the reason for a new doctor) and didn't realize it - just felt depressed and exhausted for months. It had gradually built up, so my husband and I thought something else was causing it.

I hope the doctors have looked at reasons for your wife's seizure and ruled out all possibilities. (I don't say that to scare you, but that's what they did with me. Turns out I've had epilepsy since childhood but didn't realize the funny "asleep" feelings I had on one side of my body weren't normal.)

You sound like a wonderful husband. This will be challenging, but together you can get through it. :)

Hope that helps.

I don't have insight on that specific hospital, but I was diagnosed 25 years ago at age 23, when I had a grand mal seizure. (Fortunately, I was home at the time.)

I just wanted to give you encouragement - be patient and be proactive with medications. If she doesn't like how she feels and you don't like how a particular medication makes her act, tell the doctor and insist on something different. I recently began seeing a new doctor and he tried to change my meds - and whatever he prescribed made me feel awful. I could not function after one dose. So we scrapped that one and are carefully monitoring my tried-and-true medication.

Be aware of the side effects and the symptoms of overdose - I was overdosing on my medication (hence the reason for a new doctor) and didn't realize it - just felt depressed and exhausted for months. It had gradually built up, so my husband and I thought something else was causing it.

I hope the doctors have looked at reasons for your wife's seizure and ruled out all possibilities. (I don't say that to scare you, but that's what they did with me. Turns out I've had epilepsy since childhood but didn't realize the funny "asleep" feelings I had on one side of my body weren't normal.)

You sound like a wonderful husband. This will be challenging, but together you can get through it. :)

Hope that helps.

Re: New To this

Submitted by John73 on Thu, 2011-12-29 - 02:44

wouldnt know much on upmc though second opinions are always a good choice for insight into this in case one neuro missed something,or just hasnt the experience.i would garontee if your up for a trip to philadelphia upenn has some of the best.

for one thing,like everyone else tells you,keep your eyes out for interactions and side effects on the medicines.its always best to be safe.has your wife ever had a diary?im unsure how often shes having them or how severe they may get but i would suggest you buy a five subject notebook marked "epilepsy only"and leave it in the house where everyone knows where its at.this way,when seizures happen or when shes not feeling well you can pick that book up and write down how she feels,whats happening durring the seizures and anything medically neccesary to tell the neuro as well as something to keep for future reference,even if it is a silly side effect of the medicine-write it down!this always seemed like a puzzle to me,and i was uncontrolled untill i started to piece things together for my own experiences.theres alwaays different neurologists and hospitals around also so never be shy about going to a different one.a couple books from the bookstore or librairy on epilepsy would also help you understand it all,besides,if shes going to be in a hospital once or twice a year then whynot occupy her with something educational.might want to google "neurology now" its basically a free magazine that comes by mail keeping you upto date on some neurology insights and can be interesting.its free,so whynot?have her get interested in chatrooms like the one here so she may learn a bit and make friends at the sametime with the same problems as her.

ever thought she wasnt being helped enough by that hospital,turn trhat five subject notebook into a million questions and you can really get to the neurologist.remember,its yours to keep.neuro has his paperwork so why shouldnt we have ours also.

bet this wasnt much but its late so i gotta go.

hope this helps you get started.get that book!

          wouldnt know much on upmc though second opinions are always a good choice for insight into this in case one neuro missed something,or just hasnt the experience.i would garontee if your up for a trip to philadelphia upenn has some of the best.                 for one thing,like everyone else tells you,keep your eyes out for interactions and side effects on the medicines.its always best to be safe.has your wife ever had a diary?im unsure how often shes having them or how severe they may get but i would suggest you buy a five subject notebook marked "epilepsy only"and leave it in the house where everyone knows where its at.this way,when seizures happen or when shes not feeling well you can pick that book up and write down how she feels,whats happening durring the seizures and anything medically neccesary to tell the neuro as well as something to keep for future reference,even if it is a silly side effect of the medicine-write it down!this always seemed like a puzzle to me,and i was uncontrolled untill i started to piece things together for my own experiences.theres alwaays different neurologists and hospitals around also so never be shy about going to a different one.a couple books from the bookstore or librairy on epilepsy would also help you understand it all,besides,if shes going to be in a hospital once or twice a year then whynot occupy her with something educational.might want to google "neurology now" its basically a free magazine that comes by mail keeping you upto date on some neurology insights and can be interesting.its free,so whynot?have her get interested in chatrooms like the one here so she may learn a bit and make friends at the sametime with the same problems as her.                       ever thought she wasnt being helped enough by that hospital,turn trhat five subject notebook into a million questions and you can really get to the neurologist.remember,its yours to keep.neuro has his paperwork so why shouldnt we have ours also.                         bet this wasnt much but its late so i gotta go.                           hope this helps you get started.get that book!  

wouldnt know much on upmc though second opinions are always a good choice for insight into this in case one neuro missed something,or just hasnt the experience.i would garontee if your up for a trip to philadelphia upenn has some of the best.

for one thing,like everyone else tells you,keep your eyes out for interactions and side effects on the medicines.its always best to be safe.has your wife ever had a diary?im unsure how often shes having them or how severe they may get but i would suggest you buy a five subject notebook marked "epilepsy only"and leave it in the house where everyone knows where its at.this way,when seizures happen or when shes not feeling well you can pick that book up and write down how she feels,whats happening durring the seizures and anything medically neccesary to tell the neuro as well as something to keep for future reference,even if it is a silly side effect of the medicine-write it down!this always seemed like a puzzle to me,and i was uncontrolled untill i started to piece things together for my own experiences.theres alwaays different neurologists and hospitals around also so never be shy about going to a different one.a couple books from the bookstore or librairy on epilepsy would also help you understand it all,besides,if shes going to be in a hospital once or twice a year then whynot occupy her with something educational.might want to google "neurology now" its basically a free magazine that comes by mail keeping you upto date on some neurology insights and can be interesting.its free,so whynot?have her get interested in chatrooms like the one here so she may learn a bit and make friends at the sametime with the same problems as her.

ever thought she wasnt being helped enough by that hospital,turn trhat five subject notebook into a million questions and you can really get to the neurologist.remember,its yours to keep.neuro has his paperwork so why shouldnt we have ours also.

bet this wasnt much but its late so i gotta go.

hope this helps you get started.get that book!

New To this

Comments

Re: New To this

Submitted by ExNewsGrl on Wed, 2011-12-28 - 15:40

Re: New To this

Submitted by John73 on Thu, 2011-12-29 - 02:44

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