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Phenobarbitone since 15 now an oldun with epilepsy

Posted , 3 users are following.

Winnie143
Winnie143

My Doctor upped my Medication of phenobarbitone from 90 to 120 with 3 x 150 keppra.  I told him a Nuerologist said no higher than 90 ever.  I told my Doctor this but he said I needed them now,  I have burning in my gullett and tum and all I can taste is bleachy smells etc.  I have now downed them back to 90 but still get a bad heartburn and sicky feeling in tum and my skin feels hot ...I know I need to see Doc again but I do not feel I can trust him after this.   He poo pooed what I told him.  !! just wanted to give Vent

0 likes, 29 replies

29 Replies

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  • allen07303
    allen07303 Winnie143

    Posted

    Hi win🙂

    I find it interesting how we all react to meds in a different way.

    my neurologist has me taking 3000 mil a day of keppra and I absolutely can't stand it.

    i got in to see an epileptologist and she said we need to change it straight away so over the next several weeks I'm shifting from that to another med.

    im by no means an expert because I haven't dealt with it like you,mo-jas and Les but that doesn't sound good at all and you must be miserable.

    in my mind you need to see the doc again and speak your mind...

    id like to see you enjoy the holidays in comfort🙂

    All my best,

    Allen

    p.s. 🎶 Winnie 🎶

    • Winnie143
      Winnie143 allen07303

      Posted

      They taking you off Keppra Allen ??

      You always put on a brave front but you must feel like saying to the bleeping get your act together lol xx   Do you get nasty taste or smells ?

      All the Best and go get em  Allen  xxx

      When ever I feel afraid I hold my head up high

      I whistle a happy tune and no one will suspect I'm afraid........ Whistle whistle 

      Your pal Win xxx where are the others ??? lol  done a runner from my mystery stench  ha ha  xx

       

    • Winnie143
      Winnie143

      Posted

      Find the missing m Allen ..Typo lol

       

  • allen07303
    allen07303 Winnie143

    Posted

    Yes they're taking me off keppra and putting me on limotrigene..

    another slow extended process of one to the other...

    yes I do get those weird tastes and smells..

    the smell is of electrical burning and the tastes are of ( and this ones strange) welding galvanized metal!!

    told you it was weird🙂

    I think everyone is caught up in the holiday spirit to be honest...

    hopefully anyway,,,,,And that's a good thing!

    i hope your Christmas was wonderful and all my best for a happy and healthy new year🎉😉

    your friend,

    Allen

    p.s. 🎶keep singing Winnie🎶

    • Winnie143
      Winnie143 allen07303

      Posted

      All medication has some side effects but cannot be as bad as your Keppra (notice they are your Keppra now lol ).

      I haven't had a single choc over the holidays oh yes I did but only on Christmas day xx and two milky drinks lol.

      Keep well and remember head up !! shoulders back and say to Doc "Side effects first please"  Wishing you good luck over the New Year xx  In other words Back at ya lol xxx keep a smile handy, I'll be thinking of you xx

      Pally wally doodle all the Day xx   Off to look up limotregene

       

    • karen26258
      karen26258 allen07303

      Posted

      Hi Allen, Hi Winnie, so you're swapping over to Lamotrigine or better known as Lamictal, don't worry too much it's been around for a long time, I've been using it since 1998 and it's my anchor drug, Keppra - terrible drug , I went on the highest dose possible and then had to swap to Zebinix then onto to Zonegran and finally Perampanel (Fycompa) which is a new drug. But, I'm still holding on to the hope that my VNS will be a success, I just go to the clinic every month and have it ramped up. Take care and happy healthy new year, Karen
  • Winnie143
    Winnie143

    Posted

    Well I gather you are not pregnant or breast feeding lol so all should be okay xx
    • Winnie143
      Winnie143

      Posted

      Joke Allen xxxx

      Now a song 

      Oh Dannyboy the pipes the pipes are calling

      From glen to glen and down the mountain side

      The Summers gone and all the leaves are falling

      Tis you tis you must go and I must bide xxxx   Too Sad I'll think of a happier one xx

  • allen07303
    allen07303 Winnie143

    Posted

    Hey win🙂

    Yes that's a very safe assumption on your part my dear .....

    i have to tell you though that "Danny boy" is an all time favorite of mine!

    if you get a chance listen To Ray Prices version of it....

    it's wonderful

    • Winnie143
      Winnie143 allen07303

      Posted

      No My Brother Terry sings it,  well used to but he is older than me by a just over a  year and he used to sing it in the key of C  I will listen to his though (he is 21 lol oh a pig just went overhead) ha ha

      So be well and good luck on the other pills

      My dog will cross her paws and I'll cross fingers for you.

      Keep Well Pal xx

  • steve1951
    steve1951 Winnie143

    Posted

    Winnie

    I was on phenobarbitone years ago. We all have different experiences with these meds. I felt stupid and didn’t realize how stupid until my meds were switched. You shouldn’t have to deal all of these side effects without your Dr’s concern. Your skin burning should be looked into asap. Is it leaving scars or turning your skin red? Some anti-convulsants can cause a serious skin side effect known as Stevens-Johnson, which in extreme cases, can be fatal. It only happens in a small number of people but it can happen at any time when taking some seizure meds. Allen, lamotrigine seems to be one of the anti-convulsants with a higher risk of developing Stevens- Johnson syndrome. Young people starting out with lamotrigine seem have the greatest risk. I don’t know if it’s coincident, but I started getting what looked like bruises on my arms after starting lamotrigine. They didn’t burn, but just showed up. I called my Dr up. He didn’t think it didn’t sound like S-J.

    Steve

    • Winnie143
      Winnie143 steve1951

      Posted

      I was fine on them Steve but the Dr's said we have to up them, I told them that a Specialist said never take more than 90 in the mornings, but did they listen to me in a word Nope !! grrrr lol ...

      My skin feels hot since they overdosed me lol as I feel that's what they did/done to me.  Well back to 90 in the mornings with white pills for burning windpipe (As you see Steve I am melodramatic)  but they really messed me up not had a seizure in 6 years and got the shakes this morning got hubby up at 5am  !!! lol  Ahh well perhaps they wont give over the allotted amount ever again!!   Grrr Listen you Docs !!

      Keep Well Steve and Allen and thanks for being here ..any requests for a song?  ha ha

      Love to you both and keep well

      Win

    • steve1951
      steve1951 Winnie143

      Posted

      Winnie, You can sing “You’ve got a Friend” by James Taylor or Carol King. Both on youtube. You’ve had to have heard it. It's a classic. James Taylor is the one who made it famous. Carol King wrote it and has her version.

      Allen, Its good they’re tapering you on and off slowly. My Dr witched me from 450 mg of lamotrigine to 2000 mg of Keppra and I became a different person. The slightest thing could cause me to lose my temper. I almost got arrested one time. Now I’m on both lamotrigine, 450 mg (maxed out) and levetiracetam (generic Keppra) 1500 mg. With both, I don’t have the anger issue.

      Steve

    • Winnie143
      Winnie143 steve1951

      Posted

      I'll make my own words up when I can't think of them okay Steve as I always do lol  For All who have Epilepsy to the tune of "You’ve got a Friend as sung by Carol King and James Taylor

      When  you're down and troubled and you need a Doc to listen

      And they keep changing all, why all of our meds

      Think of Allen and all of us  and soon you will feel a smile

      To brighten even your darkest times

      You Just type out your thoughts and you know whenever we can

      We'll come typing and share your big E  problems

      Winter Spring Summer or Fall

      All you gotta do is call and we'll be there yes we will

      Aint it good to know that we have some friends x2 

      Altogether  "Doc's You listening to us!! "

      Well did I sing it okay added my words as you saw lol  Be Well All

    • karen26258
      karen26258 steve1951

      Posted

      Hi Steve, I take Lamotrigine and a well known side effect with this is a skin rash, I'm always noticing a rash but as one clears up another starts. We don't know what toxins we're putting in to our bodies, but what's the alternative? Karen
    • steve1951
      steve1951 karen26258

      Posted

      Karen

      I don’t know what the answer is to skin rashes or bruises. I never had them before taking lamotrigine. They show up like a blood bruise overnight or just seem to instantly appear the next time I look at my arm. Just checked, no new ones. It’s like abracadabra. They only appear on my arms. The one I’ve had for a couple of days is almost gone. His/her baby brother/sister is fading on my wrist.

      I also have psoriasis that needed to be treated before a knee operation. I had some pin prick size blood scabs on my scalp, not psoriasis. The dermatologist thought I had a disease (can’t think of the name of it) where my (liver?) wasn’t functioning correctly and the iron in my blood wasn’t being filtered out. Solution, call up the local vampire and drain blood once or twice a month. Glad tests proved him wrong. After knee surgery, it was discovered I have psoriasis in my knee. Abracadabra.

      My neurologist doesn’t think there’s a link between the blood bruises and lamotrigine. My GP thinks I have weak capillaries that become damaged from hitting my arm on an object. I must be living in some pretty dense air and swinging my arms to hard. I think my neurologist and GP are both wrong.

      Keep us posted on your VNS.

      Steve

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