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Does anyone else still have attacks whilst on Meds?

Posted , 5 users are following.

leanneherald
leanneherald

Hi im new to this forum.. I was given carbemazapine when I had my first episode 2 years ago, whilst they worked for the mort part the side effects were unpleasant. For my most recent attack they tried me on Amyltripteline which were for the most part working but as they were gradually increased the restless legs were unbearable. Im now on pregabalin and most of the time the pain is kept at bay except for the bearable ache and the odd niggles.. but sometimes especially at night Im having severe attacks, does anyone else still get attacks or is this a sign that my meds arent working? Like I said for the most part its fine just some nights its just pure torture. Any imput would be appreciated.

0 likes, 12 replies

12 Replies

  • vicki78970
    vicki78970 leanneherald

    Posted

    Hi Leanne, I am so sorry you are having these awful attacks. I used Turmeric 800 mg (It's a spice. you can buy it at any grocery or drug store) during the day, Carbamazapine 400 mg at night.

    A few weeks back I was on this web site & someone suggested acupuncture. 

    After the 1st treatment I started getting pain around supper time. I took a carbamazapine that night. Well I was pain free after the 2 nd treatment. It can take up to 10 treatments but it's great to not have that pain anymore.

    I pray you get the same relief soon. 

    • leanneherald
      leanneherald vicki78970

      Posted

      Hi Vicky... thankyou for the tip on Turmeric, Ill give it a try, I have also seen ads about acupuncture and Im looking into it allthough Im waiting to see my neurologist on the 27-02-2018.
  • marilyn39866
    marilyn39866 leanneherald

    Posted

    Hello

    I am sorry for what your going through. I have a medication called Aptiom (eslicarbazepine ACE) and it gave me bad restless leg syndrome so my Neurologist prescribed me (PMS - Clonazepam 0.5 mg) I take 2 every night and the Aption at night and now it has calmed the restless legs.I am of sure what you mean by attacks in the night can you explain that more please.

    • leanneherald
      leanneherald marilyn39866

      Posted

      Hi Marilyn, Its generally when I sit down for the night after work, I take 300mg Pre-gabalin rwice per day. I was previously on carbamazepine 1500mg per day but the side effects were awful. Next I tried Amilytripteline 200mg twice daily but as the dose increased the restless legs were unbearable.

      The Pre-gab work usually and give a good level of pain relief.. I'm unsure wether it could be relating to my menstrual cycle? Apparently the drop in eastogen can affect the way your brain processed pain...

    • marilyn39866
      marilyn39866 leanneherald

      Posted

      Hi

      Another this I use is homeopathic pellets of magnisium you put 10 little pellets under your tongue and they melt, Also I use a moisturizer cream on my legs before bed and try to keep them cool . This helps me a lot. I am 63

      so I am way past the estrogen drop lol but I hope this information helps.😊 Marilyn

  • geoffreyPHN
    geoffreyPHN leanneherald

    Posted

    I had the same experience, I unfortunately reacted negatively to the side effects of both amatrypalene and carbamazepine. My attacks got worse, more frequent, and would effect me most at night as well.

    magnesium, turmeric oral is a great idea. Topical creams and ointments containing capsicum, eculyptus, are my favourite. Ice packs help me sleep as much as medication so keep in mind, the medication they prescribe hardly works, so natural alternatives are nice because if they don’t work the side effects are beneficial.

    • leanneherald
      leanneherald geoffreyPHN

      Posted

      Hi Geoffrey.. Yeah I'm seriously looking into what natural treatments are out there. Its debilitating at times and every little helps.. this is the 4th night running that ive been in agony...

  • rene80490
    rene80490 leanneherald

    Posted

    HELLO THERE, I HAVE TN FOR THE LAST TWO YEARS AND LAST OCTOBER 2017 I STARTED TAKING VITAMIN B1B6B12 (100mg/5mg/50mcg) TABLETS. I TAKES 3 TABLETS A DAY IN THE EVENING AND I NEVER FEEL PAIN FOR THE LAST 5 MONTHS NOW. IF YOU HAVE TIME, TRY TO GOOGLE THIS VITAMIN TO LEARN WHAT IT DOES TO YOUR BODY. THIS TABLETS IS ONLY AVAILABLE IN THE OTHER COUNTRY (PHILIPPINES) BUT NOT IN THE US. HOWEVER, MY US DOCTOR INFORMED ME THAT VITAMIN COMPLEX WILL DO BUT IT DOES NOT INCLUDE B12. YOU CAN ASK YOUR DOCTOR TO GIVE YOU A SHOT OF B12 ONCE A MONTH COST OF $20 PER SHOT. IT WORKS FOR ME AND I HOPE IT WILL WORK FOR YOU TOO. GOOD LUCK!! B12 HAS SOMETHING TO DO ON RELAXING YOUR NERVES.

     

    • leanneherald
      leanneherald rene80490

      Posted

      Thankyou Rene I'll definately look into it.. are they only available in the phillipines or would I be able to get them in the UK?

    • rene80490
      rene80490 leanneherald

      Posted

      I am based in the US. Im sure you have one in the UK. Your Doctor will know. I’ve been blessed that it work for me 100% so far... pain free! God Bless
    • geoffreyPHN
      geoffreyPHN rene80490

      Posted

      Ya b vitamins and anti oxidants, high strength high dose high frequency works. Magnesium and vitamin A as well. My pain is so severe it takes a perfect storm to get it down to 5/10 lately I have been tapping into golden seal, and orpin rose for relief.
    • rene80490
      rene80490 geoffreyPHN

      Posted

      I have no TN pain attack yet since I used V-B1B6B12 6 months ago.
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