Hello Moyamoya Friends !!
 Back home from hospital after a week. AS you heard from my friend I was having seizure like activity but, I was having violent behavior ( alot of swearing with yelling, unvoluntary body movements (the whole body).
Then I would be the regular nice me. This went on many times during a day, went on for five days. I have no memory of this( maybe a few minutes here and there).
Then after the 5 days. I became aware of myself, family,freinds and my surroundings. Had many different DRs. but not a concrete answer for what happened.
Did have another MRI, EEG,cat scan, and spinal tap.
They did change the anti seizure med from dilantin, to Trileptal. Did have a direct bypass July 11, 2005.
now I'm on a journey of seeing 3 neurologist at 3 different hospitals. Maybe one day I will get an answer.
  Thanks for your support!!!  Your friend Lena

Welcome back Lena!  What a frightening experience that must have been for your loved ones (and you, with the little bit you remember!).  I hope that the rest of your recovery is smooth and uneventful.

Hugs from out west,
Jill

Hi Lena,

Although you have been through this recent unexplained occurrence, I'm glad to hear you are back to yourself, so to speak.  I'm sure it was frightful and espcially not knowing why this happened to you.  I hope you get an answer and have a smooth recovery here on out.

Hugs,

Lore

Lena,
How terrifying.  I cannot imagine having such intense things happen and not being able to remember them.  I am proud of you for sounding so strong and being on top of things. Many hugs! [smiley=hug.gif]

I was wondering if you were on any steriods during these crazy spells?  I have a friend who warned me about Prednisone.  When I was on it (several years ago) she told me that her mother went kinda' psychotic while she was on it, but then was okay once they took her off.  Just wondering if that could be an explanation?  

They talk about Decadron's possible side effects here (look under the "Neurological/Psychiatric" section):

                    Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This is the steriod they usually put peole on after brain surgery.

Good luck to you and LOL, ;;D
Stephanie

Welcome back Lena!  ;;D

So glad to hear you're feeling better.  Yes, hearing from your friend and cousin about your situation was a little frightening.  I have been on Dilantin since my surgery in May, but my neuro is slowly weening me off...  Please let us know how your appointments with your neurologists go.  I'm hoping that they will be able to shed some light on your recent experience.

You're in our thoughts and prayers....

Take care,
Shan

Hello,
no, I wasn't put on steroids coming home from the hospital after  the surgery. I'm wondering if it might have been the Dilantin. I asked this question to the medical proffesional and were told of course not. The seizure like symptoms I was having at the DRs. office during a regular blood draw for cholesterol level, My dr. then called to Boston(Brigham and Womens) to talk to Brain Surgeon, Nurse practitioner told them to pump me up with a dose of Dilantin . They did do so, it seems from there  I was Jeckle and Hide for  5 days.
I'm going to research my theory some more.
     Thanks MM friends!!!         Lena the curios....

Oh no!  If you do find a link between your experience and Dilantin, please let me know.  The most I was taking was 400 mg daily, but now I'm down to 200 mg 2 times daily.  I was told that Dilantin is an "older" anti-epileptic/seizure drug that many doctors and hospitals like to use because it is available intravenously.  However, my neuro is trying to wean me off slowly, and I have started taking Zonegran instead.  

I did ask about Trileptal after hearing about it from Carol (CarasMom), but for now, my neuro said that he believes Zonegran will work best for me.  He did also ask "How did you hear about Trileptal?"  ;)

Well, I'm going to also look into any possible links between Dilantin and its side effects...please post anything new that you may find.

Take care,
Shan

I must say that I had debilitating side effects from Dilantin...plus it was such a pain to have my levels checked.  I was sluggish and very spacy, as well as always tired.  
My headache doctor moved me to Keppra, which I love!  I do not notice any side effects.  I have also heard great things about Lamictal.  
I too will research Dilantin...interesting possibilities!
Take care ;;D,
Stephanie

Hello Friends,
Did find out some info. Coincedently our news paper "The Gardner News" Where I live. Has  a small section where people get to ask a few sections "DR.Gott"
The question was this person on Dilantin for 20 years should they be concerned about thier kidney and liver?
He explains that they should get periodic blood levels to achieve an appropiate therapeutic level.
When used properly under medical supervision Dilantin is a safe med. However there are side effects and OF MORE IMPORTANCE Dilantin may ADVERSELY REACT: with many other drugs, including alcohol,anticoagulants,tranquilizers, aspirin,hormones,anti-diabetes pills,certain anesthetics,antacids,steroids, and antidepressants.
Which I took 4 of those meds.
He goes on to say most patients don't have to worry about side effects from Dilantin, because such reactions are so infrequent.
I'm really thinking now it could have been the Dilantin. When I see the neurologist in a few weeks I'm taking this clipping with me. Going to do more research.
 Hope this helps.     Your Friend Lena

That is very, very interesting about Dilantin.  I knew about the level testing...I had to do those at least bi-monthly.  What a pain that was!  I, however, didn't know anything about the adverse reactions to mixing meds.  I am impressed you found that article.  I looked for several hours yesterday and found nothing linking Dilantin to any type of behavior you described.

Good luck talking with your doctor about your findings! ;) Please let us know what the doc says. I am proud of you for finding a possible explanation. We have to teach our doctors these days as much as they teach us! [smiley=thumb.gif]

Take care,;;D
Stephanie

Oops,
I meant to add....is everyone familiar with the standard side effects that Dilantin can cause?  If you are taking it, you definitely should be familiar with the adverse effects, b/c they can become pretty bad.  
Stephanie

Thanks for the info Steph and Lena...

I do have my Dilantin levels checked quite often, along with other lab work, but the wierd thing is...although my Dilantin was increased up to 400 mg per day, somehow my body didn't absorb it and my levels still showed way below the "normal" range.  If I may ask, how much were you prescribed?  

Oh my gosh!  :o I have experienced first hand Dilantin's interraction with other medication, specifically my thyroid medication Synthroid!  It's a long story, but my TSH levels increased way above the normal range, and I definitely felt the side-effects.  :-[  My current neuro didn't start me on Dilantin, but he is slowly weening me off, as this is not his choice of anti-epileptic drug for me...

Lena, I personally don't think that Dilantin directly caused your unfortunate violent behavioral episodes, but it could've interacted with other medications you may have been taking, especially because you mentioned that you were/are taking 4 others in the category mentioned (maybe to prevent such episodes)...but that's just my guess.  [smiley=twocents.gif]  Like Steph mentioned, please keep us informed on what your dr. says...I'm going to mention this to mine too...

Take care,
Shan

Forgot to mention...

My neuro did say that once I'm off of Dilantin completely (now down to 200 mg daily), I'm going to feel much better.  I asked him what he meant by that, and he said (like Steph mentioned), it can make people feel "dull" or "not as focused or as sharp."  

Steph,  once you discontinued Dilantin could you notice a significant change in the way you felt?  [smiley=huh.gif]

Shan

hello,
I was on 300 mg per day, the boost I recieved at the DRs. office was 300 mg  after that morning I had 100 mg.
( took 100 mg 3 times a day).
When they stopped it in the hospital on Sunday. That night I woke up every hour during the night feelig better, better, better. By the morning I was me. The next day they started Trileptal 600 mg per day, for a week up to 1200 mg per day. I feel great, no episodes, and I feel like myself. I'm happy and have lots of energy. I do get tired at times but, that can be expected. All is going well for now. You, are correct it wasn't Dilantin itself but, the interaction with the other meds that could have caused adverse effects.
               Your MM friend Lena

Shan,
I feel much better now that I am taking a different anti-seizure medicine (Keppra).  I hated dilantin and I was on it for about 2 years.  I cannot remember my dosage :(.  Yoiu should also begin to feel yourself again once you are off the meds.  But, also when I was going through all the medical stuff that you are having to go thru again (God bless you), I was sometimes not myself!  I know when i was in California for my two surgeries, I was totally disassociated with reality.  Everyone always askes me how I did it and I say...I really didn't, only my body did!  Essentially what I am trying to say to is: don't too much of yourself right now.  Being a bit foggy might be a subconcious defense mechanism!  I am thinking of you so much right now, Shan.  I hope you have a fantastic support system at home.  If not, lean on us!  

Thanks for the update Lena. You sound great!  Keep healing, woman!

Take care, both of you,
Stephanie

Hi Lena...good to hear you're taking Trileptal.   Yes Yes it made Cara very tired which is why the doctor wanted her to take at night only...then little bit in the day time...I guess you are taking it in pill form...Cara is taking it in liquid form (4ml in am and 5ml in pm)...it used to knock her out...now shes full of energy and been on it a year now (dosage is also double of when she started)...so I guess once your body gets used to it then it won't affect you as much.

One day I have her 2.5ml and my husband gave her another 2.5ml ...neither knew it...she was slurring her speech, falling asleep at therapy (before she returned to school)....and we figured it out.  Cara now says Daddy already gave me...or I double check.

It sure was scary hearing from your friend the episodes you were having...but am glad they figured it out and you're getting back to feeling good.

Tight Hugs,

Carol

Hi Lena,

So sorry to hear about your experience. I wanted to share with you though that my husband has had the surgery for MM but before his surgery he didn't have any seizures, TIA's or anything but severe debilitating migraines.

It wasn't until after his surgery he had 2 seizures and we found out that it was the medication his local doctor had put him on.

He had them 2 days in a row and I contacted his doctor and told him I believed it was the new medication just for the fact that nothing changed but his medication, his doctor said to go ahead and discontinue it, we did and he has not had another one since.

Has any of your medications changed? Just a thought, it happened to be the case with us.

Wishing you well soon.

Terry