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really fed up with this

Posted , 7 users are following.

fed-up
fed-up

how on earth do people with this wretched disease go years or even 20 years suffering with this?

i'd like to know if anyone has had any treatment aside from drugs, ie, cannabis oil, glycerol injections, or any other type where it has worked out please

im on oxcarbazepine 2100mg and gabapentin 1800mg a day, upped oxcarb the other day and today got confused and took an extra gaba anyway, i have pain today so even taking two of each this morning is not working! why do these tablets work for a couple of days then get pain breaking through? what happens when the drugs stop working? would love to hear about treatments that work.

1 like, 40 replies

40 Replies

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  • Valkyrie
    Valkyrie fed-up

    Posted

    Doc told me it was very dangerous to just start taking less of any of the medications because it can double the side effects if done incorrectly eg double the pain as well. Go see your GP for advice on that. I got no side effects from Tegretol except dry mouth and a bit fuzzy in the brain these days. The lyrica makes me fall over but does not seem to help the pain much for me. I will try to get back to you asap after the op. I too am FED UP. Strangely, mine improves if i lay on my right side. Why? Um, as for opening a new discussion, the sidebar on the right of my page says "start a new discussion" with a green box around it. Do you not have this? Its not near the top of the page, its down a bit.
  • caryl33332
    caryl33332 fed-up

    Posted

    I understand your frustration.  Here is my story.  I hope it helps you to understand about medications and treatments.

    I was first diagonised with TN in 2000, however for several years before that I had pain in the front teeth in my lower jaw.  Also, when in my twenties I had a bout with Horton's cephaligia (extreme pain inn my left eye), and in my 50's I had Bell's Palsy on the left side of my face.

    Once I was diagnosed I was given tegretol (over the years I tried other medications, but tegretol was the only one effective).  Eventually, I was taking so much tegretol that it was negatively affecting my kidneys.  Additionally, I started having extreme break-through pain.  I had (MVD) micro-vascular decompressio with a craniotomy.  I had complete pain relief for 5 years.  Then the pain came back.  I had a second MVD and had complete pain relief for one year, then the pain came back.  I am currently taking Lyrica, but I am having breakthrough pain that has been excalating.  The surgeon tells me I am no longer a candidate for MVD.  I am not crazy about the other procedures such as ballon compression, radiation, gamma knife, etc. but I thinking about Percutaneous Stereotactic Radiofrequency Rhizotomy (PSR),  Also, I am hearing about research in a therapy called (PNS) peripheral stimulating electrode implantation.  I have to do something pretty soon because it starting to become hard to talk.  I'll report back hear when I have more information.

    By the way, I am an American living in the Seattle, WA area.

    • RachisCool
      RachisCool caryl33332

      Posted

      Thanks for that Cary, you've been through the mill and back by the sounds of it.

      I've only ever heard people's regrets with gamma knife such as permanent half tongue numbness and other parallings affects. I think you'd know more on these issues?

      In your opinion was 5 years pain free worth the op even though it came back? It sounds worth it to me.

    • colin69485
      colin69485 caryl33332

      Posted

      Hi cary 

      Thank you for sharing your experience with the MVD treatment - you certainly have been through the mill and are still looking for relief. That's tough! I'm a novice at this TN misery, but am very interested in the treatment side of things, should I get to that stage.

      Would you give the reasons why you are not attracted to ballon compression, radiation, gamma knife etc.? Is that from research or second-hand experience of those you know?

      Thanks again for your message and best wishes with the treatments.

      I live in Kent, England. Take care. Colin x

    • caryl33332
      caryl33332 RachisCool

      Posted

      I would absolutely do the MVD again, even with only 5 years pain free, but it was no pain,, so yes it was worth it.  I chose MVD because the success quotient was about 85%.  I did it a second time with hopes I would get another 5 years, but alas I only got one year.  I would do MVD a 3rd time, but I am no longer a candidate.

      Have you heard there is research into DNA.(check out the March 2015 Naples Science meeting)..here is a link

      http://www.facingfacialpain.org/

       

    • caryl33332
      caryl33332 colin69485

      Posted

      I have been doing research over the years.  The reason I am not attracted to some of the treatments you mention is that the success rate is very questionable.  On the other hand I may have to make a choice soon if this episode does not quiet down, and so may turn to one of these treatments.  There is research going on into the possibility that their is an inherited piece to the mystery of TN.  There could be something in one's DNA that makes them prone to TN.  At this point it is just a theory but you might be interested in the Facial Pain Research Foundation that reported on the March 2015 Science meeting.The report has the names of the scientists and researchers looking into DNA and TN.  I hope your TN is manageable and I hope this information helps you. 
    • colin69485
      colin69485 caryl33332

      Posted

      Thank you, Cary.

      My maternal grandmother suffered from acute face pain but it was never identified as anything specific at the time. Like so many people of her generation and previous generations, little was known about many of the disorders that we understand today. It could be that I've inherited an allele from my mother's side of the family and one from my dad's! Bingo,they've met up in me. 

      Anyway, thank you so much for the references - I will certainly research into them, while I'm still relatively pain free, and report back anything that seems relevant.

      Keep in touch. Colin

    • fed-up
      fed-up caryl33332

      Posted

      hi carly, i would like to know what made you a candidate, because this useless neuro who i saw said 'only in extreme cases' do people get this type of op, i know he is bulls******g me, as i have read up on just about everything on tn and what can be done. i will be complaining about him.
  • Valkyrie
    Valkyrie fed-up

    Posted

    Just saw the last two comments about other people in the family having had TN. My mother had it for many years. After my dad died, mum moved in with me and, coupled with the loss of my father was enough to send her to her bed most of the time. I am just applying through the Freedom Of Information Act to a couple of the hospitals in town to find out exactly what operations she had. I think she was on 5oomg a day when she moved in with me but i assume that progressed over the next 6 years until her death. Researching that also
    • caryl33332
      caryl33332 Valkyrie

      Posted

      I think both my mother and grandmother had some form of face pain.  Both of them ended up with false teeth.  I remember my grandmother talking about how much her teeth hurt.  Even though TN has nothing to do with your teeth I can't help but think having them all out would end the pain.  But of course the trigeminal nerve will still be there to run amok.
    • Valkyrie
      Valkyrie caryl33332

      Posted

      I know what you mean. All my teeth on the left are just killing me today.. both top and bottom. I wake up with it in the morning and can hardly speak or even drink anything until about 2 hours after i take the tegretol. That lasts for about 9 hours as a rule then it starts up again. So i eat when i can and sleep when it lets me.
    • caryl33332
      caryl33332 Valkyrie

      Posted

      Perhaps you should talk to your neurologist about adjusting your medication.  The most safest amount of tegretol I had per day was 1200mg.  Once when I was in the hospital they accidentally gave me 1800mg which made incredibly ill.
    • RachisCool
      RachisCool caryl33332

      Posted

      Cary does it make you tired and slow thinking like my meds do?
    • justjane37
      justjane37 Valkyrie

      Posted

      I am the fourth woman in my family to have TN. There are studies being done into the genetics of TN.
  • RachisCool
    RachisCool fed-up

    Posted

    Is anyone having to go to work with this condition like me?
    • Valkyrie
      Valkyrie RachisCool

      Posted

      I was still working until yesterday when the pain started before i even got out of bed. Took both Tegretol and Lyrica and waited until 8 for it to take effect. Got to work with my son driving as we car pool into town. By 2pm i couldnt eat,drink or speak so i sms's him and he drove me home again. Had to do this last Friday as well. I am on leave now until my op on 25th and i am hoping to be able to go back after 6 weeks at home. Working is so hard when you have TN. The drugs made me slow thinking and so very tired. Got home at the end of the day and just fell into bed. Husband was cooking for us both but i cant eat most of the time. How about you?
    • RachisCool
      RachisCool Valkyrie

      Posted

      I am looking for another job now as I couldn't keep up with my sales job and like you slow thinking and in pain. I have a job interview today and I feel bad already but I need to work so what to do.
    • RachisCool
      RachisCool Valkyrie

      Posted

      I am typing on my smart phone and it sent before I could finish. Lol.
    • kenleigh
      kenleigh RachisCool

      Posted

      I am too, and unfortunately my job involves a lot of talking, which is a huge trigger for my pain. I take 2700mg of gabapentin and 30 mg of Baclofen daily and get enough relief to make it tolerable most of the time, but it's still pretty miserable. I'm having MVD on June 4 and can't wait!
    • Valkyrie
      Valkyrie kenleigh

      Posted

      i have made a note on my outlook calendar to try hard to get back toyou via this thread on June 3rd in the morning. I will if i can.

      I wish you a speedy recovery and a successful op.

    • RachisCool
      RachisCool kenleigh

      Posted

      All the best and may it best every success for you and k
    • colin69485
      colin69485 kenleigh

      Posted

      Hi Kenleigh

      I endorse others' sentiments - best wishes for the 4th June.

      Like you, I need to talk a lot, too! I work as an adult education lecturer and last week I was 'hit' by that sudden stab of excruciating pain that we're all too familiar with. My students are now expecting it so it at least keeps them awake!!

      Take care. Colin x 

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