Well, It's been awhile since i have posted on the board. In April I went back too Boston too have my follow up on my surgery back in January.  Everything went great and i haven't had any headaches since Jan. ;;D.  All of my restrictions have been lifted. But since my follow up visit with Dr. Ogilvy i have had 3 seizures. One on April 22nd, where Chad(my fiance) called 911 and the other 2 on May 5th. On may 5th at 3:30am I was sleeping and it wole me up. I couldn't move, speak, nothing. It lasted about 10mins. And the other one was at 9:30am on may 5th. I was wondering if anyone has seizures and is there any seizure meds that they are taking that don't constrict the arteries in the brain. I also have hypothroidism that is also an issue cause alot of the seizure meds like dylantin states that if u have trouble with your thyroid and are taking medicine then you can't take seizure medicine.
Thanks,
Laura Stevens

:DHi Laura,
    I Had Never had a seizure in my life till I had one during my first brain surgery :'( Now I seem to have them alot (small ones) numbness in my face and eyes [smiley=huh.gif] I took Lamictal (not sure of the spelling) but stopped taking it when my husband died in 2004,  it cost over 300 $ a month and I couldn't afford it with all the other meds I take (over 300 $) Now that I moved back to Florida and live on disabilty I get all my meds for a 1--3 $ co-pay. I may go back on them if I keep having the numbness. :o (this little happy face is How my Eyes feel  :o)Hope this helps ;)

Hi,
I do not know if this will help at all but, When my daughter Molly now 11 was an infant until she was 4 years old she had grand Mal siezures. eventually they put her on Phenabarbitol and the siezures stopped. This is not scientifically proven or any thing but she never had another siezure. This has led to her not being diagnosed until March of this year for headaches and arm numbness. I do not know if it constricts the blood vessels or not but it is worth asking about. Good Luck!!
            Molly's Mom(Charl)

Laura,
             My daughter Mandy had a seizure also in her sleep about a year and a half ago..she's 23 she was 2 plus years post op and had never had a seizure before it lasted a half hour or so same thing as you her eyes were open but couldn't hear see or respond she couldn't even hold the weight of her own head up she was like a rag doll. She fell asleep and woke up 2 hours later like nothing happened was perfectly fine and wondered why her tongue was bitten on the end. She takes Neurotin well gapbetin(sp) a generic of Neurotin since then, with no side effects. I don't know for a fact but I wouldn't think it would constrict her blood vessels because she was in really bad shape she had 4 strokes and hads suffered life time disability and mental disability too, I don't think they would take the chance on a med restricting but I don't know for sure. Hope it helps. Good Luck!
                                                  Nancy ;;D

Thank you Nancy and elaine oh so much...any advice would really be helpful at this point. Dr. Ogilvy wasn't expevting the seizures too start until about a year but they have started way early.  I havealso had an EEG done,haven't heard the results from that yet.  But those drugs for seizures are defin. worth checking into too see if they constrict the arteries or not. I also have hypothroidism and cannot take most drugs for seizures because of that. Iam open too any suggestions.

Again, Thank you both for giving me advice

Laura

Laura,
 Our son Mark had surgery in January of '05.  He experienced seizures as well after the surgery.  Dr. Steinberg sensed that it was due to blood that was left on the brain from the surgery.  He had several tests to make sure there were no bleeds etc.  After the first seizure he was "loaded" up with Dilantin.  It took awhile for the correct levels to be reached.  Mark had four very noticeable Focal seizures until the correct level was reached.  After that he had several episodes of numbness that were in different areas of his body that would last up to fifteen minutes.  Anywhere from his head to his fingers would be affected.
 They subsided after a period of time and he was changed from Dilantin to Keppra.  Keppra seemed to be tolerated much better and after meeting with a few Dr.s seems to be a popular choice.
 I hope that gives you some comfort.  Mark has been weaned off the Keppra for over six months and has had no further episodes.  That doesn't mean that this is right for you though.  Everyone that we have met is so much different.  But that has been our experience.  The seizures can be controled and from what I understand are not lifelong.

                              Good luck in the future,
                                       Ron

Laura,

My daughter had a seizure disorder well before she suffered two strokes and was finally diagnosed with Moyamoya.   She tried numerous seizure meds before she found one that worked (which we just weened last week!).

There are so many different seizure medicines out there that work in so many different ways, there should be something that can help you without affecting your bloodflow or your thyroid.   For Daphne, we've heard Lamictal, Keppra and Zonagran as good choices.  Depakote may not be good because it can cause thinning of blood (would have to be carefully monitored with aspirin), and other more sedating medicines may affect your blood pressure.   Daphne is also on Neurontin as a migrain preventative.   She started about a month ago, and has not had migrain symptoms since  ;;D

The biggest factor is going to be having a neurologist who is knowledgeable about seizures and Moyamoya disease, and who is familiar enough with different seizure medicines to know which ones are more likely to negatively impact you, given your health conditions.  


Good luck!
Jenny

I have taken Keppra in the past and it helped a lot! I am now on Neurontin and it helps a lot, too. I stopped taking Keppra because I weaned down and had a baby. But after Abigail was a few months old, I started having a lot of symtptoms (ie headaches and numbness), so I was put on Neurontin. The ONLY bad thing is, it makes me sleepy....

Good luck finding something that works!

:) Sara

HI Laura

I have been having focal seizures (focal epilepsy) since my by-passes in Nov 05. During these seizures I feel a bit vague , my right hand shakes uncontrollably and often I cannot speak. Each of these episodes does not last much longer than a few seconds (fells like forever though).
I take tegrotol and after a lot of playing with doses I am relatively seizure free. I frequently have the vague feeling and my hand feels funny, but it does not progess from there. I am more likely to have one if I am really tired.
My neurosurgeon and neurologist both say that it is common to have this after a craniotomy due to scarring on the brain and that it usually stops after approx. 12 months (Heres hoping !).
I have taken the attitude that if I am alive and this is the only residual disability I am left with, life is good.

Hope this helps.

Let go.Let God.

Helene