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Riley19

Posted , 5 users are following.

john2414
john2414

Hi, new to this site, recently diagnosed with being epileptic after collapsing 2 weeks after a car accident, which I was luckily unscathed. Fine for 2 weeks and then collapsed. Hopspital of 3 weeks, all tests MRI, ECG, CAT Scan, Lumber Puncture - nothing - so they decided I was epileptic and discharged me immediatley with a load of pills. Phenytoin & Lamotrogine.

Phenytonin degreed & Lamotrigine increased but when the phenotoin is decressed or my diet regime changes (dont eat regular) for about 3/4 days I am not good, sore head, confused, dont feel good.

And I am not really hungry and passing not as much but I feel I am putting on weight

Any advice

1 like, 9 replies

9 Replies

  • SteV3
    SteV3 john2414

    Posted

    Hi Riley,

    Welcome to the site! Sorry to hear about the car accident though, just try and not let it ruin your life. I have Epilepsy, but mine was brought on by another nerve condition called at the time Focal Segmental Dystonia, which become worse over the years and led me to Generalized Dystonia, basically a nerve condition that effects all muscles, causing cramp, etc.

    I would inform your doctor how you are feeling on the tablets you are on, not all epileptic suit everyone, since no one is the same. Just because your body rejects one tablet, does not mean it will do the same on another medication. There are many Epileptic medications, it's a case of finding the correct one.

    I was an odd case, and medications took ages to find out which was suitable considering I am on many different ones a day. It took about 6 months to diagnose the correct drug and dosage for me, I'm on 3 medications and one Class C drug, in case of emergencies - as in phoning 999.

    So, have a word with your doctor or get another doctors opinion, some differ quite drastically.

    Regards,

    Les.

    • john2414
      john2414 SteV3

      Posted

      Hi

      Many thanks - I am a bit in the dark with all this - as I said me diagnosis was 'suspected epilepsy' discharged immediately, given a load of pills - very high dose of Phenytoin and a low of Lamotrigine and a sheet telling me what to do over the forthcoming weeks - ie gradually lower the one and increase the other until I am totally off Phenytoin.

      Feeling ok overall just now am on the max 200mg of Lamotrigine and 100 mg Phenytion - which I am supposed to be reducing by 25mg every week until I am off it.

      But as I mentioned before, when I reduce by 25mg - I am not well for about 2/3 days - until I seem to 'balance' out amd then am back to being OK.

      Hence I am now accessing my next week professional wise etc I see if I can lower my dose depending on what I have to do.

      The 'downtime' when I lower this stuff by 25mg is bad!!!

      Anyway thanks again for getting back to me

       

    • SteV3
      SteV3 john2414

      Posted

      Hi,

      Many medications require a 'weening' period. Initially, I was on Epilim at around 200mg a day, but over the years that has increased drastically to 1,800mg. The highest a consultant would put me on would be 2,000mg, but it could cause adverse effects. So, now I have an outpatients appointment to see a doctor at the Pain Management Clinic in December.

      When I first started on Epilim, I was problems with bowels - they put this down to IBS (Irritable Bowel Symdrone). Whether that was true or not I'll never know, it was a long time a go.

      The Phenytoin, is it a "slow-release" one or standard? if it's slow-release then it stays in your system longer and you would be taking the next one before any side-effects kick-in. Sometimes it's more benefical to the patient depending on the circumstances.

      Regards,

      Les.

    • john2414
      john2414 SteV3

      Posted

      Thanks, the phenytoin Sodium are

      NRIM 100mg capsules - now whither these are standard/slow release I have no idea. All the instructions were reduce dose by 25mg weekly from 200mg whilst the Lamotrigine is increased.

      Am on the max dose of the Lamotrigine now is 200mg twice daily and I have got the Phenytoin down to 100mg once a day (night)

      As I said I have been told to reduce the dose my 25mg every week until it is zero and I am only on Lamotrigine - but I am worried as for the past times I have done this reducing of the dose for the following 2/3 days I am not well.

      I go to bed feeling so so and by about 2am I wake up and feel the onset of a sezuire. Sit up in bed, disorientated, funny taste in my mouth (metalic),  - really odd and upsetting.

      A few days later back to normal (if you can call it that!)

  • steve1951
    steve1951 john2414

    Posted

     John I’ve had epilepsy most of my life, an eye injury is suspected of causing a brain injury. It would seem that reducing the dosage would decrease the side effects, but if you’re gaining (or losing) weight, it might the effects of the level of phenytoin in your blood stream. The dosage may be dependent, in part on your weight, and if you’re gaining weight, it may change the concentration of phenytoin. But as you state, you’re gaining weight. That may be a side effect of the lamotrigine.  I was on Dilantin, the name brand before the generics were made, phenytoin. The problem with phenytoin it is very hard to get the dose right, it may take months, and must be taken on a regular time interval. I’m trying to change to Lamotrigine ER (Extended Release, 1500 mg) and Levetiracetam ER (500mg) once a day now and I have set my cell phone alarm to take it the same time every day. This is the second time I’ve tried to switch from the reg. med.s (1000 mg of each) This time, up to last week, I weaned myself on it by alternating days of taking reg. meds and the ER and hope it works out. The ER was causing insomnia even when I took a sleeping pill. I think the sudden change to an ER and increase of Levetiracetam might have played a factor.

    With phenlytoin, you need to try to take it on a regular time line. Cell phones with alarms didn’t exist when I was on phenytoin, but I took it on somewhat of a regular basis. When I began taking phenytoin years ago, I was okay for the first couple of days, but one day, I had to lay on the floor, the room was spinning and fast. I was overdosing, the Dr. had me stop it for a couple of days and begin on a lower dose. Blood tests are very important when taking it, phenytoin has a very low treatment margin. And again, if your weight changes drastically, so does the concentration of phenytoin. Lamotrigine is not so dependent. Your Dr.’s should aware of that. Phenytoin may also remove lamotrigine faster from your body than taking lamotrigine alone.

     It’s very important to follow your Dr.’s regiment in weaning of it. Suddenly stopping it and how fast you wean off of it may cause a seizure. I would definitely see a Dr. as soon as possible if you wake up and feel a seizure coming on and some sort of metallic taste. Maybe your time line of tapering off of it needs to be changed.

     I hate to tell you this, but I’ve been on a boat load of anti-seizure meds and time before the right one(s) have found to be effective. As with any seizure med. and epilepsy, try to avoid alcohol or limit drinking to an occasional one.

     

    Take Care, Steve

    • john2414
      john2414 steve1951

      Posted

      Good evening.

      Many thanks for responding to me. Feel I am a bit out of my depth with this. The hospital really just discharged me with 'we think it is epilepsy' take these pills and out the door. It had been 2 months till I feel 'semi' human again but thank you for getting back to me and giving some 'sensible' advice. In your small explanation of the situation etc has given me a better understanding of the medication route etc than I have ever got from the consultant etc

      Thanks again

  • old_nanna
    old_nanna john2414

    Posted

    my laptop is playing up ,so i hope to make it short , my addvice is Get a second nion on anything regarding a diagn, ask for more proof as well as more eeg ,scans , before going on medication , in myy case i took the first word , and maybe if i had asked for a second oppinion i would be a lot better , i reacted badly to every medication they put me on and now i dont take anytthing , but my TURNS are less frequent  and further apart , , , good luck anyway mate , 
    • john2414
      john2414 old_nanna

      Posted

      Good evening.

      Many thanks for responding to me. Feel I am a bit out of my depth with this. The hospital really just discharged me with 'we think it is epilepsy' take these pills and out the door. It had been 2 months till I feel 'semi' human again but thank you for getting back to me and giving some 'sensible' advice.

  • olivia1995
    olivia1995 john2414

    Posted

    Can any one help. Lng story short mum was diagnosed with epilepsy about 6 days ago following two separate seizures. Now on day 5 of epilim 100mg and 500mg she is getting a minty chalky taste in her mouth also ringing in the ears slight stomach pains . Has anyone suffered the same or with similar symptoms if so please help enlighten me. Mum is very worried and so am I. She weights very little but always has is the does too high? Please someone help
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