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Ohrammer
Ohrammer

Background - wife has had epilepcy for some 45+ years, she has numerous types (Grand mal, peti mal & absense etc)

for the first 15 years it was badley controllled and she spent a long time "in the system" then she started to get comntroll with her meds to the point where she would have one fit a year although would have lots of small jumps& Jerks this lasted until three years ago when the fits came back witha vengence. they have tried new meds (Keppra etc) increasing meds decreasing meds and sent her for a week in the video telemtry unit.

it transpires that some of her fits are NOT epileptic????? snce then her Non epileptic fits have increased to a point last week were the emergency services were called (shee had three 5min+ fits one atfer the other) she is now having 3-10 fit per day all non epileptic. According to the nero specialist on the phone it may be due to too much meds??????

We are to see the nerologist on Tuesday so hopefull get some answers and my wife some rest..

2 likes, 17 replies

17 Replies

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  • lesley61388
    lesley61388 Ohrammer

    Posted

    Hi

    i am epileptic too and jerk but touch wood haven't had a grand mal for years.

    however I do have feelings but not sure what these are

    can I ask what a non epileptic fit is? 

    Lesley 

    • Ohrammer
      Ohrammer lesley61388

      Posted

      Well when the VT was done my wife had a fit in front of doctors, family every one.

      This was the normal convulsing however eye open and she was crying. No wetting herself, lots of hand movement and a recover time of minutes

      Normal fits involve wetting, heavy breathing eyes closed, 1+hour recovery very bad headache

    • karen26258
      karen26258 lesley61388

      Posted

      Hi lesley, when you have 'feelings' how would you describe them? I have these but describe them as sensations that 'wave in and wave out'. I know I sound a bit crazy but it's like the sea when the tide comes in and waves out. Because they happen suddenly and out of the blue.

      I told my Neurologist and he said they're Simple Partial seizures, which were once referred to as an Aura which may or may not develop into a seizure. He also said does it feel like there's a cloud over you for less than 10 seconds.

      If this is how you feel then you might want to see someone.

      Best wishes Karen

    • nancy71585
      nancy71585 karen26258

      Posted

       Karen26258, 

      You were speaking of Simple Partial seizures. I am 74 years old and 

      have had a lot of different types. I have what is called a Simple Partial

      or sometimes Complex Seizures.  There is a wave comes over me, but

      I do not call it a wave. It is the most horrible feeling one can have. Some-

      times it goes away very fast, but a lot of times it does not. I forgot to mention that I have had them all of my life. I cannot talke or understand what you (other people) are saying and my mind goes blank. Sometimes  I am able to get to a chair and set down, but for a year of two now they come on too fast. 

      Sometimes the aura will stay with me for several days and I am like a zoma. Most people who know me know I do not feel good. I get really nervous and it can be 100 degrees and I always have to have something around me. I know some people hear sounds, or see things or maybe have waves that come over them as you say. My sence of feel affects me a lot. By the way, I do see someone. Medicine sometimes helps for awhile and it seems to wear off. And then back to the doctor I go. Do you ever feel like a monkey? I mean they really do not know how to control them so they try something else. When you leave the Doctor's office you are almost afraid to take the med. since some work in the wrong way...in other words... you start having the seizures worst. I have went on enough so I will let you go. 

      Nancy

       

    • karen26258
      karen26258 nancy71585

      Posted

      Hi Nancy, when you have more than one type of szs it could suggest that the szs are coming from many different areas in the brain instead of just from the temperal lobe. Which is what I get and so are very difficult to control.

      Talking of a wave, I imagine that the 'tide' is waving in and waving out, but it's happening in my head, or a sudden cloud has arrived and it floats past in seconds, or develops into a complex partial. Or worse still I can get day long auras/simple partial szs. Ask your doctor for a drug called Clobazam, my Dr gave them to me about 22 years ago, he calls them 'my rescue drug' and they work they can clear your head, maybe make you a bit sleepy until you get used to them but ask him for them as a standby. Karen

  • Winnie143
    Winnie143 Ohrammer

    Posted

    Hope you can get help for wife as they are upsetting to have and to watch a loved one  going through this.

    I found Keppra good but too many side effects, I'd get up and take my pillsand go back to sleep. 

    I hope you find the right drugs for her as I feel like a new one comes on the market and they try it on us !! 

    I have taken phenobarb since I was 14 and gradually they have increasd them, they also put me on Epanutin (bad) so now off them and on Keppra 750 x twice daily,  but I have cut them down and I seem okay if I don' take the morning keppras.  

    Good Luck to you and Wife xx   Hope you find the right ones for wife xx   xx

    I started my fits at 14 and now in my late 60's  but  still scare me when arm jerks.

     

    • david01026
      david01026 Winnie143

      Posted

      Can I ask what side effects you get with Keppra?  I have partial epilepsy and have absenses and 'auras', a few a month.
    • Winnie143
      Winnie143 david01026

      Posted

      David,

      When the Docs put me on Keppra all I did was sleep all day and was very teary, I didn't like being on them so I told the Doc and he upped them !!

      Do they listen to us?? lol  So I don't suggest anyone downs their pills !

      But in my case I wasn't being listened to and we all know our own bodies.  I started by taking 1 less every other day in mornings, then after  2 weeks I as still sleeping so I cut them down again.  So I just take 1 in the morning and 2 at night.  My aimis to cut morning ones out. 

      I have been doing this for a year now and I can get through the day without sleeping..Regards Win   Oh been seizure free for 5 years xx approx.

       

    • david01026
      david01026 Winnie143

      Posted

      I am on 2g in the morning and 2g in the evening, I sleep a lot too, I am teary but always have been over emotional matters.  I am also on sodium valproate, I have complex partial of the temporal lobe, mine isn't fixed and I have spells of a few absenses spaced over a few days every six weeks or so.  Very glad to hear you are seizure free, that must be such a Godsend.  I live on an excellent bus route so I'm not greatly put out by the DVLA siuation.  Were you given Keppra or one of the cheapo generics?  I am always given cheapo, these don't dissolve well so I cut them in half. What dosage were you on? XX

       

    • karen26258
      karen26258 david01026

      Posted

      Hi David, about the cheap version of our drugs, I had the same situation a few years ago and questioned it with the pharmacy and they said if you don't like the brand, you can let them know which ones are suitable for you and they will get them in. It's worth a try ☺
  • sharonj
    sharonj Ohrammer

    Posted

    HI. I had a non epileptic tonic clonic (grand mal) seizure in April. completely without warning. After an MRI they discovered a tiny lesion on my brain which appears to be benign.However it's not clear whether this caused the seizure. I have also had an EEG which suggested that I'm not epileptic. I was.put onto Lamotrigine which hopefully means I have a very reduced chance of another seizure.

    Presumably your wife will have an MRI which hopefully may give you some answers.

    Good luck, I hope this will be resolved for you both.

  • david01026
    david01026 Ohrammer

    Posted

    That is very interesting as I take 16 pills a day and still no cure.  Good luck to your wife.
    • Ohrammer
      Ohrammer david01026

      Posted

      The wife's the same I spend my weekend making up the next weeks meds, 10 tabs in the morning, 2 at lunch, 2 at tea and another 7 at bed time. Then there the asthma stuff and pain patches on top of that...
  • steve1951
    steve1951 Ohrammer

    Posted

    Ohrammer

    There is no normal fit in epilepsy. When you wife has a grand mal seizure (tonic clonic), being unconscious, loss of blander control, body movements or other uncontrollable events may be a few of the symptoms. I have a combination of tonic clonic and partial seizures. When I have a partial seizure, I have no loss of bladder control either. But I also do not have hand movements.

     

    If your Dr thinks it’s too many meds, you may want to spend some time this weekend and look up possible side effects of each one. It takes more time, but you may want to cross check the side effects caused by combining meds together which seems to be what your Dr thinks. Some meds increase the chance of having a seizure. One Dr gave me a pain med and I started to have problems. I looked it up and discovered it lowers the seizure threshold. Combining some meds together may interact and can lower or elevate the dosage of a med in the body. One drug I take is lamotrigine. Taking Dilantin would remove it from my body quicker than normal. Taking Tylenol on an extended daily basis may do the same thing. From now on, if a Dr prescribes a new med, I’ll cross check it on the web for side effects and drug interactions with meds I take.. Even some supplements can cause problems. I would make a list up of any supplement your wife takes and bring it with you. Good luck. Steve

    • Ohrammer
      Ohrammer steve1951

      Posted

      Steve I agree that all fits are slightly different, however there are traits.

      this was confirmed in the video telemetry session.

      there was epileptic active on the ecg when she have a "normal" fit but the none epileptic fits there was not.

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