Monoclonic seizures..take Keppra

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Epiphany

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Hello everyone,
I am really new to this lifestyle...while I have been on topamax for over two years for Chiari type 2 malformation which caused stroke type migraines that was the worst of my symptoms. I am a mom of two boys 8 and 13 a wife of a wonderful workaholic husband who will not stop till we all have everything we want and desire I have yet to have a complaint in life. I would run a mile a day spend each Friday out if the house for mommys day and Monday thru Thursday I worked from home in the afternoon and spent time after the boys got home from school going to this and that sport function after doing homework...
All that is over sad to say..I am still in good spirits I expect nothing but to be able to return..I want my life back and I fight for it EVERYDAY!!!
On Halloween on a simple trip to Walmart with my family and my niece I had a massive (what We thought was a seizure) in the car. I was aware the entire time my husband pulled to the side of the road put my seat down took off my seatbelt all the necessary things to ensure I didn't hurt myself...it went on for your normal two minutes or so but afterwards I couldn't regain control over my movements...straight to the ER we went...kept tellin the doctors it was a seizure not knowing it wasn't they gave me a dose of benedryl that made the first seizure look like I was playing around...they had to put pads on my bed hold me on the bed so I didnt fall off and eventually inject me with something to knock me out...
Later I find out that the cold or virus I had a couple weeks before had attacked my nervous system and did permanent damage..for the next three weeks day in day out I convulsed every hour non stop..we went to doctor after doctor..no one knew what to do they looked at me and looked helpless...finally I heard about the Mayo Clinic and called but they are booked til Feb of next year the same day I called them I reciever a call from a movement doctor in town who said he could help me..they got me in the next day and got me on Keppra...I can't say enough about this drug I am now only convulsing when I am active and I am only on 250 mg. Last night I uped my dosage to 500 mg.
I am experiecing hip and leg cramps that keep me up at night and wonder if anyone else is out there like me?
I know my odds of a normal life but I am a strong person...
 
Oh, wow,

Epiphany, it sounds like you've been through more than a wringer (or two, for that matter!)

Welcome to CWE! You'll find lots of information here in the Library and the Kitchen, and the Padded Room is great for venting when you need to. Trust me, we've all been there. :)

I'm glad to hear that Keppra is helping you. :) For some (like me) it doesn't. You also, if I remember correctly, have plenty of room to go up in the dosage. There are quite a few members on the forum here who use it, and use the maximum dosage of 3000mg. There are some who also use more than that, too.
HOWEVER, DO NOT INCREASE THAT DOSE WITHOUT THE HELP OF YOUR DOCTOR.

It has been known to happen that viruses will attack the nervous system and cause E to appear--although it's usually infections that do it like meningitis and Lyme disease, if viruses can get into the right place, like it did you, they are capable of doing the same damage. For that, I'm sooooo very sorry. :paperbag:

I don't know that we have anyone just like you here at the moment, be we are still growing, and pretty quickly at that, so don't be surprised if someone shows up soon. Consider yourself a ground-breaker! :bigmouth::pfft: (That was meant as a compliment, BTW).

As for the muscle cramps, why not try some magnesium? I, and many others here on the forum use it to help with that, and migraines as well. My migraines, and cramps are now gone....except on the days I forget to take it.:paperbag: Then, I can feel a nagging at the back of my head....

Have you considered keeping an E journal? While you know what CAUSED your E, you may find that there are certain things that actually TRIGGER your seizures to occur more often. That's what an E journal can help you find out. By tracking a number of things, you can find patterns, and so can the doctors.

I wish you the best, and take care!

Meetz
:rock:
 
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Awww Epiphany... would an awful time you are having. I take Keppra and whilst when I first started taking it, I did have some horrible side effects - I can say that for now (touch wood) it has been helping me. I do get infections quite a bit that knock me for six (and increase my seizures as a result) but try and stick with it.

Welcome to CWE - I have found this place great for support and comfort when the going gets tough... we are here for you :)

*hugs* and please, get well soon. xx
 
Did the doctor say you are having seizures related to Epilepsy? Or seizures connected to the infection?

I take Keppra XR 3000mg Tegretol XR 600mg and now Lamictal 50mg for now and it helps a lot. I wish you luck on the Keppra and just know that you can increase it quite a ways- but always ask your doc. I decreased my Tegretol and had a bad seizure and now have A-tonic seizures where I fall. I don't have them that often but when I do, it scares the crap out of me. I live on the top floor of my apartment complex.. kinda scary walking down stairs. I've falling up stairs before due to Atonics- and hurt my wrist.
Anyways- I do wish you luck on solving your mystery, the infection and your events that are happening to you. I hope that the doctors are doing all they can to make you comfortable.


Please take care,
Crystal
 
Thanks everyone...I have rplied to each of you who wrote
Meetz..the doctor has given me enough Keppra so that I can continue uping my dosage one (250mg) pill per week for 8 weeks once I feel that I am at my best dosage I am to call in and let him know so that I can return to the office for a visit. He video taped me on my initial visit and will do the same at that visit to compare the results. I really do love this doctor he had so much empathy and compasion for me was straight forward with our questions and me and my husband didn't know whether to laugh or cry when we left...every Friday I up my dose one pill today I am on 500 mg and there is some improvement as long as I am calm and stress free I have no convulsions just some tremors. If I take a shower go out in the car or to my sons games then it gets pretty bad so we will keep going so I still have hope:))
thanks for the journal idea I was thinking I knew all my triggers but hubby brought more to my attention so I am now keeping one.

Tempus...if you don't mind what side effects have u had? The doctor warned me very seriously of those but as of now I have not experienced any and I am just curious if I will as my dose goes up...also what infections do u get because I worry whatever gave me this us NOT gone is latent in my system and my physician said he would look into that and it was a good question but I left without getting that answer...,

Crystal..I was never treated for the virus in the beginning they thought it was a bad reaction to my topamax which is why they gave me the benadryl which is also why that didn't work and made me worse...I am back on the topamax that I really need and that really keeps my other illness under control...I have falls like you Just walkin along and down I go for no reason but it's from my Chiari Type 2 Malformation which causes a disturbance in the blood flow between the spinal cord and the brain this also causes weekness in my extremeties and stroke like migraines the topamax has been a blessing!

Once again thank you all for writing I am getting so much from this site I have enormous compasion and appreciate iation for each of you!
 
Hi Epiphany, welcome to the forum. :hello:
 
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