1. Community
  2. Brain and nerves
  3. Epilepsy and Non-epileptic seizures

Epilepsy Drugs

Posted , 4 users are following.

HorseLover
HorseLover

Hello:

  I'm having difficulty with the different kinds of anticonvulsants I've tried, because I'm sensitive to medications, and side effects are so troubling, especially affecting my thinking and memory.  I was wondering if anyone has those problems?

  I'm on a trial of Vimpat, along with the Dilantin I take, and so far things have been okay, other than I'm experiencing itchiness a fair amount on my back and neck.  My memory hasn't improved, but my thinking seems a bit better, although could still improve.

  This Vimpat medication is so expensive, and does anyone know of a drug which is much the same, but less expensive?

 

1 like, 9 replies

9 Replies

  • Winnie143
    Winnie143 HorseLover

    Posted

    Hi HorseLover,

    We are not allowed to mention makes of drugs on here (I dont think?)

    I can tell you what I have been on most of my life cant I ?

    I have been on phenobarbitone since 14 but you have to see Doctor to advise

    you.  I wish you well and when you see Doc ask him about side effects.

    Good luck xx

  • john2414
    john2414 HorseLover

    Posted

    Good Morning

    I am a bit new to this, a 43 year old guy with no history of epilepsy, either myself or my family but after a car crash in June & a subsequent seizure I am now on Phenytoin & Lamotrigine. 

    I have been informed both from my consultant, epilepsy nurse & GP that their may be side effects and the medication route initially prescribed may not work! but if I experience any side effects, like rashes to going into a coma (that apparenlty only occurs in a small number of patients!!) they can reassess the medication route.

    Not entirely helpful.

    Initially I experience severe itching, memory loss & overall confusion but they seem to be subsiding.

    Have you spoke to your consultant, GP etc with your issues?

    My understanding is that there are a few alternatives to the route you have been presribed on, and the side effects you are experiening are not particulary good.

    I do not think that on here we can suggest alternative medication but with what you are saying Vimpat, along with the Dilantin is not great for you.

    Sorry I cant be of any further thoughts/help

    • HorseLover
      HorseLover john2414

      Posted

      Hello John:

        I'm so sensitive to medications, and especially the anticonvulsants.  My memory has been getting worse as time marches on, but that is a bad side effect with them.  I've thought about talking with a homeopathic physician to see what suggestions they have for seizures.  My goal in dealing with my seizures is to take the least amount of traditional anticonvulsants, supported by homeopathic remedies that help patients with seizures.  My seizures were brought on because of herpes encephalitis in '97, with the seizures starting in 2002.

      I've stopped sugars and carbs in my diet, as they are not good for seizure disorders, as suggested by the homeopathic physician, and it seems to have helped.  The Vimpat that I started on November 4th of this year could also be helping, along with the regular med of Dilantin I've been on for about four years now.

      Another side effect that is not "fun" to deal with is thoughts of suicide, and that is another common side effect with anticonvulsants.  Lack of enthusiasm for doing things also troubles me.  Not fun at all.

      Good luck to you in dealing with your seizure problem, and thanks for commenting.

      HorseLover

       

    • steve1951
      steve1951 HorseLover

      Posted

      HorseLover

      If you’re having thoughts of suicide since Nov., you definitely need to see your doctor. Anticonvulsants, antidepressants and other mind altering drugs all seem to pose this risk. If you’re only seeing a GP, you need to see a neurologist. Many Dr.’s, (the one I also have) don’t believe in Vits. or other supplements. But I take some vits anyway for general health. If you drink alcohol on a regular basis, that can make matters worse. When I’ve changed meds, its always been a taper off one and onto another with a follow up examine in 2 or 3 months after they have had time to work. Some meds require a blood test to monitor the level of the med and to see if it effecting the blood cells. The ones I take now don’t require blood test for the cells though I’ve had a couple of them to monitor the concentration of the med.

    • HorseLover
      HorseLover steve1951

      Posted

      Thanks Steve:  Yes, I know the procedure for when a person feels like that.  I see an epileptologist who is a specialist for epilepsy.  I have to get regular blood checks for my Dilantin levels, so also do that.  The drugs that work medically for a person's seizures are sure mind altering drugs, for sure.  My doctors and I have good discussions about that.  I don't do alcohol because that is certainly not good with the anticonvulsants.  All of us sure have to be careful with this disorder.  Not "fun" to say the least.

      HorseLover

  • NickOliver
    NickOliver HorseLover

    Posted

    Can't you get it on prescription from your GP or are you in the US?
    • HorseLover
      HorseLover NickOliver

      Posted

      Hello Nick:

        I know the routine for RX's, so I get any meds with the doctor's prescribing.  No, I am in Canada.

        Thanks for your concern Nick, and good luck with your dealing with your problems.  We all need help, for sure

      HorseLover

  • steve1951
    steve1951 HorseLover

    Posted

    HorseLover

    I don’t know what Vimpat is, but I’ve been many of them. I’ve had epilepsy since I was 8, now I’m 63. (Man, where did the time go?) Some didn’t work or made me unable to function at my job, and one made me go into a rage over petty matters, and the ones (2) I currently take cause insomnia even though I take an antidepressant and a sleeping pill before I go to bed. My Dr. offered to change my antidepressant, (he just recently increased the dose of one seizure med. I wanted to do the opposite, increase the other one but I’m maxed out on it), but after looking up all the possible side effects of the other antidepressant, no thanks.

    Some of these meds may cause a skin rash among other side effects. One very rare skin disorder is known as Stevens-Johnson syndrome. When I started having bruises suddenly show up when I began one, I phoned my Dr., but he said not to worry, I would have been dead already if I had it. (It causes swelling or bloated skin, from what I understand, not just a rash). He doesn’t think blood bruises that suddenly appear on my arms are from the one med, but it’s ironic they suddenly came about after I started to take it.

    The cost of meds can be insane. My Dr. switched me from regular generic meds. (my insurance will not pay for non-generic meds) to generic ER (extend release), made in China of course. I have good insurance, they cost me $10 each. Without insurance, they would cost over $1,500/mo.! I didn’t know if insurance would cover the cost. Before I had them filled, I looked on the web for RX coupons and found sites that offered them and are good at specific pharmacies. The cost would have come down to the $750 to $800/mo. range, valid for one year. Even at that price, I would have stuck with the regular generics. I don’t know if they’re web sites like that in the U.K. I’m in the U.S.

    All I can suggest is to talk it over with your Dr. My Dr. will work with me most of the time, but I don’t think he’ll change anything now since the current combo seem to be effective. Unfortunately, it can take a long time. You may want to keep a diary of how you feel to see if anything changes for the worst or better over time.

    Good luck.

    • HorseLover
      HorseLover steve1951

      Posted

      Thank you Steve.  Lots of info, but will see what my GP says when he is back from holidays.

      HorseLover

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.