Home from the seizure monitoring unit!

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Ginny
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Date Joined Feb 2003
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   Posted 6/12/2007 4:09 PM (GMT -7)   
Hey everyone,
 
Okay, I just spent a week at the hospital in the seizure monitoring unit.  Quite the experience to say the least.  I'm SO glad to be home.  I'll be washing and picking the glue out of my hair for days I'm sure!! Hehe..
 
Anyway, I am definitely having small simple partial seizures.  They are occuring on the right side of my brain not the left as we had first thought.  The left temporal lobe is where I had my stroke.  So we assumed that was the side of the brain that the seizures were happening in.  Weird eh.
 
So they dropped my frisium (clobazam) dose from 32.25 to 7.5mg in 3 days.  YEAH.  Major withdrawal symptoms.  I was not a happy hospital camper.  They put me back on 30mg yesterday, but I'm still having a lot of anxiety and just feeling crappy. I'm sure I'll be almost back to feeling fine tomorrow.  I'll then start tapering off of it very slowly to avoid any crap! skull
 
They put me on Lamictal.  Apparently it is best for partial seizures.  So I"m hopefull.  Does anyone have any comments or experience on this drug?  I am starting out on 25mg twice a day, then in two weeks I'll go up to 50mg twice a day, and then two weeks after that, 100mg twice a day.  If I need it.  I'll stay on as low a dose as possible.  I'm hoping the 25mg twice a day will be enough.  We'll see.  I haven't had a seizure since I started taking it yesterday.
 
Thanks guys and gals!
 
Ginny 
 
 
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


djdaz_1985
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Total Posts : 2408
   Posted 6/13/2007 4:25 AM (GMT -7)   
Hey Ginny and welcome back!
 
Im gald that everything went ok (with the exception of your withdrawl of course!). If your glue is anything like the one I had, you could be there for days! I went to a Royal Navy hospital to have an EEG and I got a trainee putting the electrodes on. (2 tonnes of glue and he had to move 3 of them!) But they got the result they were looking for so i didnt mind too much!
 
Lamictal is a good drug from what I have heard. I know someone who used to take it (She has since some off it) and it helped her a lot. But her sz were grand mal. Overall though, I dont think I have heard many bad reports about it.
 
Keep us posted on how your drug change goes and whether you get the glue out! lol
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 6/13/2007 3:19 PM (GMT -7)   
Hey, thanks Darren!
 
Yeah, it was funny in the shower this morning.  I think I lost half my hair.  It was coming out in clumps along with all that glue.  Still not sure I have it all out yet.  I have really thick hair, so it hides well! 
 
The electrodes that were on my forehead left nickel-sized welts.  They look awful! What an ordeal!  Hopefully they will go down in a few days.  UGLY!
 
So my new meds have really kicked in.  I haven't had a seizure since Monday night.  Amazing!  I get 2-3 minimum every day.  I feel so clear headed and content.  This Lamictal medication is good stuff!  Thanks for telling me how good it is.  I believe it!  My sister started to cry on the phone with me today.  She said I haven't sounded that good and even-keeled for a decade! I feel very hopeful that this is the road to recovery and happier days.  My Clobazam (frisium) withdrawal is gone.  Those meds have kicked back in too.  So I'm feeling great today.  Tomorrow is going to be a good day!
 
Thanks for the support Darren.  I appreciate it a lot!
Ginny
 
 
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 6/13/2007 4:26 PM (GMT -7)   
Ginny,
 
I bet you are glad to be out of the hospital.  But wasn't that the best test you ever had?  I am so glad you are on the road to recovery.  As for the phone call from your sister, isn't it amazing how our friends and loved ones can tell how we're feeling just by talking to us over the phone?
 
Ginny, I can't tell you how happy I am for you.  Please keep us posted.
 
Take care!
 
Carla

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 6/14/2007 12:12 AM (GMT -7)   

Ginny,

I am glad to hear that the drug change has been successful and so quick as well. Sometimes the changeover can take a long time (as in days, maybe 2 weeks) so you have been blessed. As for the welts... I wouldnt worry too much. They will fade out. Your more than welcome to the support. Hopefully your story can give support to others as well.

Big Hugs,

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 6/14/2007 9:44 AM (GMT -7)   
Thank you Carla!  Your words of encouragement mean a lot to me!  I am feeling much better.  Still no seizures since Monday night!  I'm feeling a bit nauseated and tired today though.  Not sure if it's the Lamictal kicking into high gear, or the slightly lower dose of Clobazam giving me mild withdrawal symptoms.  Either way, it's tolerable and hopefully it will go away soon!
 
You're right.  It's amazing how you can tell how someone is doing by hearing their voice.  I'm so glad that I am coming across happier and healthier.  I sure feel it.  That test was a blessing.  It gave my doctors and me so many answers.  I now know that these seizures aren't dangerous and they're not causing any problems.  Lots of relief there.
 
Darren, the welts are almost gone!  Yahoo!  I hope my experience can offer some support to others here too.  The test is so important to have and even though it might be uncomfortable to come off your meds, it's crucial in order to get all the answers. 
 
Thanks to you both for your support and feedback on my experience!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 6/14/2007 10:11 PM (GMT -7)   

Ginny,

Are you taking the Lamictal with food?  If not, that may be what is causing your nausea.  When I was taking Lamictal, I had to be very careful to be sure and take it with food or I would get nauseous.  Keep us posted.

This board is great for all of us.

Take care!

Carla

 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 6/15/2007 9:18 AM (GMT -7)   
Hi Carla,
 
Thanks for reminding me! Yes, I do take it with food in the morning - with breakfast.  But at bedtime it's been 3 or 4 hours since my last meal, so that is likely what is doing it.  I feel nauseated mostly in the mornings when I wake up, so that is a good indicator isn't it.  I'll have a little munchy time before bed from now on!
 
Do the symptoms of nausea, dizziness go away once the drug is in my system for a while?
 
How was your experience with Lamictal?  Are you still on it?
 
Thanks for your feedback!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 6/15/2007 8:59 PM (GMT -7)   
Hey Ginny,
 
I did well on the lower doses of the Lamictal, but had trouble with the nausea as I got built up to the higher doses.  I just couldn't tolerate the nausea.  I have a friend who has had great success on the Lamictal and my neurologist didn't really want me to stop taking Lamictal, but I just couldn't handle the nausea.  So, try eating a little something before that night time dosage.  Please don't pre-judge it by my experience.  If there is a side effect to a medication, I am going to have it; I'm just one of those people.
 
Take care!
 
Carla

Rooz
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 7/3/2007 12:10 AM (GMT -7)   
I have a grand mal seizure disorder.  I'm 31 and they started when I was in the 5th grade.  I had grand mals until a neurologist put me on dilantin when I was a teenager. The dilantin never stopped the petite mal seizures.  Finally, three years ago, a neurologist was reccommended to me that specializes in grand mal disorders.  He weened me off of the dilantin. Dilantin was starting to become the joke drug for seizure disorders anyway.  After playing around with various drugs and dosages, he had me try lamictal and keppra together.  The last petite mal I had was a year ago; and that was because I had forgotten to take a dosage.  Keppra and lamictal are my wonder drugs! I now take 1500mgs a day of keppra and 400mgs a day of lamictal.  Everybody's different, but it sure does work for me.

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 7/3/2007 3:16 AM (GMT -7)   

Hi Rooz and Welcome to HealingWell! yeah

Its fantastic news to hear that the Lamictal and Keppra are working so well for you. You must have seen a very good neuro. Thank you for sharing your story with us. Its so nice to hear success stories that give us the strength to carry on seeking the light at the end of the tunnel sometimes.

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


framerchick
New Member


Date Joined Jul 2007
Total Posts : 1
   Posted 7/5/2007 4:27 PM (GMT -7)   
hello all we are new to this site. my husband has grand mal serziure he is 33. at the age 15 he was out with his brothers playing hide and go seek and he ran  in to a tree then he went back in and went to sleep.at the age of 20 he did acupunctur and he didnt have one for 10 yrs now they are back and he has one ever 3 weeks . he takes carbamazepine 200mg , dilantin 100mg. three times a day. they seem to be getting worse. he is losing his memory and ssi wont help . he cant work because they come to offten no one will hire him. our question is does anyone know a good acupuncturists in florida, we live in citrus county. can anyone help us. sad

Rooz
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 7/5/2007 4:52 PM (GMT -7)   
Framerchick - I'm only being honest when I say that acupuncture isn't the answer. I am a 31 year old man and I have a grand mal seizure disorder. First of all, dilantin is the "joke drug" for siezures. It stopped my grand mals years ago, but never did anything for the petite mals. It is a very out-of-date drug. Second, I suggest that you and your husband find a neurologist that specializes in grand mal seizure disorders. Last, my neurologist put me on keppra and lamictal several years ago. I have not had any grand mals and only 2 petite mals since then. Keep in mind that everybody's body is different, but I strongly suggest that you do some research on Keppra and Lamictal. In the meanwhile, find a solid neurologist that specializes in grand mal seizure disorders. All the best to you and your husband!

djdaz_1985
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Date Joined Jan 2006
Total Posts : 2408
   Posted 7/6/2007 12:51 AM (GMT -7)   

Hi FramerChick and Welcome to HealingWell! yeah

Rooz is right is pointing out that Dilantin is very old fashioned and is not terribly effective when it comes to seizure control. Keppra and Carbamazipine are the drugs of choice at the moment (What I call the "Cool Drugs"!) although there are many others out there and it is a case of finding one that suits you. The Carbamazipine dose is still quite low (presumably since it is mixed with the dilantin). You can take up to 2000mg a day of Carbamazpine (When its on its own) so this might be something to consider.

RE: Acupuncture --> Hmmmm. I would disagree with Rooz in saying it is not the answer but cartainly the jury is out on this one. There are some real success stories out there and some complete failures. It has not been PROVEN to be effective but thats not to say it can't be. If you are one of the success stories then I would say carry on with the treatment. It is something I considered myself as a way of not having to take meds every day but I never did it in the end. If you do carry on, we would love to hear of your experiences.

Best Wishes

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/7/2007 8:14 AM (GMT -7)   
I see my neuro on Wednesday and I know he wants to put me on Keppra as well.  I'm so hesitant to try another drug after the nightmare I had with Lamictal.  I think I'll just stay on the clobazam for now and maybe this winter I'll try Keppra.  I'm just really gun shy right now. 
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 7/7/2007 9:41 PM (GMT -7)   

Ginny,

If it helps any, the only problem I have with Keppra is when I have to do the increases which in my case is usually 500 mg. at a time.  I am very lethargic for about two weeks each time.  I am up to 2500 mg. of Keppra per day now.  As you know, we're still trying to find the right combination of medications for me also, but my neurologist has kept me on the Keppra.  I know you have just had a worse than horrible experience, but as long as you trust your neurologist, think real hard about going along with what he wants you to do with a change in medications and don't wait until this winter.  You just waited all this time to get into the seizure monitoring unit, which I am waiting to get into again myself.  I want you to get stabilized.  I can't imagine that you could ever have a reaction like the one you just went through.  Please don't put it off.  I just want you to get better.

Take care!

Carla

 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/9/2007 8:23 AM (GMT -7)   
Hi Carla,
 
Thank you for your concern and encouragement.  I'm just so scared of another bad reaction.  This one almost had me in the ICU.  I'm still not functioning 100% from it.  It hit me really hard.
 
I haven't had a seizure since June 14!  Which is so weird for me.  I do trust my neurologist, but I don't trust the medication or my body to manage it.  I'm just really scared right now.  As long as I'm not having seizures, I'll stay on my old med (clobazam).  Just having a really hard time with all this....
 
I appreciate everything you have to say on this Carla, and you're right.  I do need to be stablized.  Right now I am, so I'm going to go with it!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, possible early menopause - do diagnosis yet. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Another Day
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Date Joined Mar 2007
Total Posts : 1055
   Posted 7/9/2007 9:23 PM (GMT -7)   

Ginny,

I guess I misunderstood, I didn't realize you were stabilized on the other med.  I don't blame you one bit for wanting to just stick with it.  With what you have been through, I would be afraid to make a change also.

Take care and stay seizure free!

Carla

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