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New drugs for my wife

Posted , 4 users are following.

Ohrammer
Ohrammer

Hi all im new to the group, so thought id introduce both myself and wife.

my wife has epilepsy rather than me but thought id seek & give advise and guidance from this forum.

My wife has both peti mal and grand mal from the age of 3 following a head injury. She has taken most drugs over the last 45 years and is often treated like a test subject.

After a number of years with well controlled epilepsy there was a major change 3 years ago her grand mal fits went from 1 a year to 1 a month and continued up to a few times a week. Her peti mal episodes have also increase to massive proportions.she has been trying a number of different things to get her under control again. She takes Epilim, Tegretol, clonazepam, cetrizine and more recently tried Keppra which had no effect. now on Zonismide to see if this helps.

We have found that Keppra made her very sleep more than the other drugs and had no effect on her condition

 

0 likes, 8 replies

8 Replies

  • SteV3
    SteV3 Ohrammer

    Posted

    Hi,

    ...And welcome to the forum!  I noticed the subject was in the Epilepsy category so I thought I would read your message, since I am subscribed to this one and many more. I suffer from Epilepsy, but mine are than just Grand Mal and Peti Mal. Mine were brought on by an accident in my early 20's which left me with a damaged nerve system called Focal Segmental Dystonia, over the years that has become worse and re-diagnosed last year as Generalized Dystonia, basically I have no control with spasms and cramps anywhere in the body. This led to Epileptic Seizures and Functional Episodes (These get confused by some consultants, because they look like a person is having an Epileptic seizure, apart from there is around 28 variations). The treatment for Functional Episodes is totally different than Epileptic Seizures.

    I see you stated there was a major change 3 years ago, was this just in the periods of seizures or medications as well? I know medications require changing after time, because the body becomes immune to them. I take 1,800mg of Epilim a day, Clonazepam and Artane - Paramedics get confused by my Epilepsy and Dystonia because symptoms are very similar.

    My Epilepsy at the moment is not controlled either, but this is due to Tramadol for pain relief.

    Regards,

    Les.

    • Ohrammer
      Ohrammer SteV3

      Posted

      My wifes changes were out of the blue, no medication changes just suddenly the epilepsy changed.

      She takes 2000Mg epilim, 3mg of clonazepam, 800mg tegretol, and we are slowly bringing zonismide up to 200mg.

      I assume she was diagnosed properly when she was three. It does take a toll on her and is not good for the rest of the family. When the epilepsy is controlled life is good but at the moment its a bit of a knightmare three fits in the last 2 weeks .... 

       

    • SteV3
      SteV3 Ohrammer

      Posted

      The Epilim she takes is the highest dose, any higher and she would adverse effects. Do you know if shes on the standard Epilim or the slow-release type?

      Epilim is made by various companies, and the prices vary considerably.

      Regards,

      Les.

    • Ohrammer
      Ohrammer SteV3

      Posted

      She has the controlled release epilim she has the max does of tegretol as well.

      its just annoynig that nerologists change the drug regimes around and then tell you to come back a few months later... to let them know what happened.

    • SteV3
      SteV3 Ohrammer

      Posted

      Is your wife still on Keppra at all? That can cause seizures with some people. Amongst the following side-effects.

      You should check with your doctor immediately if any of these side effects occur when taking levetiracetam:

      More common

      Aggressive or angry

      anxiety

      change in personality

      chills

      cough or hoarseness

      crying

      depersonalization

      diarrhea

      dry mouth

      euphoria

      fever

      general feeling of discomfort or illness

      headache

      hyperventilation

      irregular heartbeats

      irritability

      joint pain

      loss of appetite

      lower back or side pain

      mental depression

      muscle aches and pains

      nausea

      painful or difficult urination

      paranoia

      quick to react or overreact emotionally

      rapidly changing moods

      restlessness

      shaking

      shivering

      shortness of breath

      sleepiness or unusual drowsiness

      sore throat

      stuffy or runny nose

      sweating

      trouble sleeping

      unusual tiredness or weakness

      vomitingLess commonBloody nose

      burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings

      clumsiness or unsteadiness

      discouragement

      dizziness or lightheadedness

      double vision

      earache

      feeling of constant movement of self or surroundings

      feeling sad or empty

      increase in body movements

      loss of bladder control

      loss of memory

      mood or mental changes

      outburst of anger

      pain or tenderness around the eyes and cheekbones

      problems with memory

      redness or swelling in the ear

      seizures

      sensation of spinning

      shakiness and unsteady walk

      shakiness in the legs, arms, hands, or feet

      tightness of the chest

      tiredness

      trembling or shaking of the hands or feet

      trouble concentrating

      unsteadiness, trembling, or other problems with muscle control or coordination

    • SteV3
      SteV3 Ohrammer

      Posted

      Hi,

      Some drugs take about 3-4 weeks to work fully, which is understandable, but if your Consultant Neurologist Is saying come back in a couple of months, and there has been no change since you last went 4 weeks ago, I would ring their secretaries or booking Office and book an appointment before that time.

      My Neurologist even tried 6 months with me at one point, I was in agony with pain. So, I got them to drop th period to 3 months with still no effect, so I am now on 10 weeks but the drug they are giving me is for Dystonic problems.

      Don't let them say when you can see a neurologist when there has been no change within a month of a new drug being introduced.

      Regards,

      Les.

    • Ohrammer
      Ohrammer SteV3

      Posted

      We see the consultant every 6 months but i have been emailing her office every other week with updates. I believe that we have a visit planned for Feb to discuss the tablet changes
  • Winnie143
    Winnie143 Ohrammer

    Posted

    I have had epilepsy since puberty all was okay until Docs muck around with doseage. I have been on phenobarbitone  and it has suited me.  No problem then.

    Yes the problem is new drugs they decide to put me on aren't suitable so more seizures.

    I am taking too many drugs for my liking so I took what I was on before Docs changed them I am slowly cutting down the kepppra.  We know whats good for us

    and what isn't but do they listen No Way!!  get wife on what she was on before.

    Unless they can harm her but seizures can harm us also.

    Good Luck

     

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