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Changing Meds

Posted , 5 users are following.

tony48808
tony48808

Hi, 

I've had epilepsy for over 50 years, since the early 90's have been on a combination of Sabril & Tegretol, has been working really good, I think I've only had one blackout while in consciousness in over 25 years even thouhg I have been having typical absence seizures in my sleep, usually in early hours of morning once or twice a month. Due to the side effects of taking sabril over a long period of time (BLINDNESS) i HAVE DECIDED TO CHANGE MEDS. Now on Keppra for the last 2 months. Always tired, sleepy, grumpy, lethargic and have had a couple of seizures while conscious. Can anybody make any suggestions

1 like, 20 replies

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  • karen26258
    karen26258 tony48808

    Posted

    Hiya Tony, I have had epilepsy now for 44 years, they've changed over time but, the absence seizures apparently are the most difficult to control. I've recently had VNS fitted actually 11 days ago,because numerous drugs don't do anything. It's worth looking into, GOOGLE it under the name of Cyberonics. All the best, karen
    • steve1951
      steve1951 karen26258

      Posted

      Karen,

      Keep us posted on your VNS. Are you taking any meds with it?

    • karen26258
      karen26258 steve1951

      Posted

      At present I take 425mg lamotrigine, Perampanel 8mg and Clobazam 10mg Per Day. Hopefully, if the vns works like it should I will perhaps be reducing the doses of my drugs. This vns fitting is my last chance of getting any quality of life.
    • steve1951
      steve1951 karen26258

      Posted

      Karen

      You’re maxed out on lamotrigine. When I had problems last year, my Dr raised the dose of levetiracetam from 1000 mg to 1500mg. I take 450mg of lamotrigine and asked him to increase it over levetiracetam but he couldn’t. I’ve never been on perampanel or clobazam. Do they affect the quality of your life? My Dr once suggested the VNS. I don’t know if I’ll bring the subject up on my next visit. If I do, I’ll ask if it is possible to come off or at least reduce the amount of meds. I know that suddenly stop taking meds can cause a seizure. Did you have to think it over before getting a VNS? I hope it works out. Some of these crazy meds are known to affect internal organs like the liver.

      Take care, Steve 

    • karen26258
      karen26258 steve1951

      Posted

      Yeah I'm on the highest dose of lamictal, but slowly I'm going to reduce them, I was on 225mg twice a day and it made my szs worse, so now I take 200mg AM & 225mg PM, as well as the others. Clobazam are a good drug, my Dr calls them my rescue drug, I can recommend them. Keppra didn't suit me. Topamax made me have szs every 5 minutes and they lasted 1.5 minutes, I can go on and on about the drugs but won't. Defo look into the vns, it's a straight forward op and you're in for 1 day and then it's programmed to suit the individual. I have got the ASPIRESR fitted which has a cardiac feature, so I'm praying that very soon I will start feeling terrific. Tomorrow I'm at the hospital getting it activated - can't wait. All the best x
  • khytt
    khytt tony48808

    Posted

    Have you tried a Naturopathic, in addition to your medication ? Ive heard many success stories, regarding various illness, including epilepsy.
  • steve1951
    steve1951 tony48808

    Posted

    Tony

    I take levetiracetam (Keppra) and lamotrigine (Lamictal). Lamotrigine was one of the better meds as I wasn’t drugged over and it improved my mood but it caused massive insomnia, up to 3 days without sleep. My Dr switched me to levetiracetam. I had a horrible experience with it. Any little item would cause me to go ballistic. After more trial and error drugs, I’m now on a combo of levetiracetam and lamotrigine. I don’t know if the combo is the cause, but I’m on an anti-depressant (mirtazapine) for mood and sleep. I’d like to come off of it. I belong to a mirtazapine group and it seems to be almost impossible for people to come off of it.

    I’ve never been on Sabril but at one time I took Tegretol alone. It seemed to work but it made me extremely dizzy when I did physical labor in construction.

    Since Keppra is clearly not working and having negative effects in your life, I’d definitely talk to your Dr about switching meds. I don’t know if it helps but I also take a daily B complex for nerves.

    Take care, Steve 

  • Winnie143
    Winnie143 tony48808

    Posted

    I was taken off phenobarbitone and put on keppra (well they lowered phenobarbs) and I kept having the shakes and seizures and they were

    stronger.  I told hospital doc I want to go back on phenobarbitone  Doc said fine but I was still taking the same amount of Keppra so I told my own Doc Keppra are horrid for me.  He went and upped them!!

    So slow but sure I took my Keppra down and I feel good with my phenobarbs and just 2 keppra  a day ..Keppra made me feel like a Zombie but just  is enough.  Touch wood I have not had a seizure/fit for

    approx 4 year +.  I stared seizures when in pubery now I am an old gal.

    Good  luck All who go through this and stay positive xx

    • Winnie143
      Winnie143

      Posted

      stared = started in Wins type
    • karen26258
      karen26258 Winnie143

      Posted

      Hi Winning, I started my szs when started puberty too, and was on phenobarbitone's (which are the oldest anti szs drug, first developed in 1938), there are some good drugs on the market. Unfortunately they stop working for me after 'the honeymoon period' so that's why the only option is to have a VNS fitted. I wish you all the best, incidentally Keppra didn't work for me.
    • karen26258
      karen26258 Winnie143

      Posted

      Oh I should have mentioned have you been tested for diabetes regarding your shakes, if they feel like a tremble it could be that or you may be having a simple partial seizure, ask to try a drug called Perampanel if that's the case.
    • Winnie143
      Winnie143 karen26258

      Posted

      Thanks for reply Karen, hope all is well with  you, the side effectsof all these drugs they give us are scary xx  especially Keppra and Epanutin !!

      So have you remained seizure free ?

      Win xx

       

    • karen26258
      karen26258 Winnie143

      Posted

      I'm not szs free unfortunately, mine are random I can go for weeks without and then hey ho I can suffer for day after day, last month I had 22. I tried with the Perampanel a year ago and got some relief, they're the latest drug to be developed and are solely for partial szs, which are the worse szs to try to control. I used to take Epanutin back in the 70s, but they're not ideal for my type of szs. Now I've got my vns turned on it's thumbs up soon. Best wishes Karen
    • Winnie143
      Winnie143 karen26258

      Posted

      Lets know ho you get on with VNS xx Good luck  Karen xx

      Wiin xx

    • karen26258
      karen26258 Winnie143

      Posted

      Hi, a VNS is for drug resistant epilepsy, it is a pacemaker for the brain, the vagus nerve runs from the neck to the feet, we have a left and a right one. At the neck it's attached to the cranial nerves and so when it's activated it stimulates the vagus nerve and then that helps the nerves that are irregular or misfire in the brain. If you want to read more it's on the website of Cyberonics, they're made and developed in Houston Texas. The surgery is very brief, approx 1-1.5 hours and you recover relatively fast. Hope this helps KAREN
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