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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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  • colin69485
    colin69485 fed-up

    Posted

    Hi there - totally understand!

    I am a newcomer to this 'club of pain', so my comments may be somewhat naive. I have a very good physiotherapist who is also a personal friend. He said that when things get worse, he would try acupuncture, if I wanted that treatment. He has several clients where this has proved very helpful, apparently.

    Have a go and let me know how you get on.

    Stay strong, my friend. Colin

    • fed-up
      fed-up colin69485

      Posted

      thanks Colin. accunpcture is certainly a thought bit i just havent got around to it yet. let me know if it works please.
    • colin69485
      colin69485 justjane37

      Posted

      To justjane

      That's brilliant news! I haven't had the treatment myself - keeping it in reserve! - but my physio friend has had positive results with his patients. Thank you for sharing that , I'm really pleased. Colin

  • RachisCool
    RachisCool fed-up

    Posted

    How about the MVD op?
    • fed-up
      fed-up RachisCool

      Posted

      that is the one im counting on, i don't want injections and all the like as i have read all that makes it worse and comes back after a couple of weeks/months. this has seriously messed up my life, im a prisoner in my own home and im upping the drugs mostly myself and at the moment i couldn't care less if i overdose, i have tripled in weight and smoking,  my hands can't stop twitching and i can't get my boots on as my feet are swollen, i just can't explain how i feel, im lucky as i have this one both sides! i have an appointment with neuro next week and boy is he getting it!
  • Valkyrie
    Valkyrie fed-up

    Posted

    I will get back to you mid next month as i am having an MVD on 25th May but i gather i will be in hospital for a week and then i dont know if i will be on a lot of pain killers or what.
    • RachisCool
      RachisCool Valkyrie

      Posted

      Where are you having the op? I wonder if they will do that at Leicester. I'll have to find out.
    • Valkyrie
      Valkyrie RachisCool

      Posted

      Oh, I am in Australia so not sure what they do in the UK. Find out what is on offer where you live though and i will get back to you about what its like and whether it works well.
    • maggie80535
      maggie80535 Valkyrie

      Posted

      Hi Valkyrie. Yes ,I am very interested in hearing if you have the energy after an op to post here. Best of luck . I have had MRIS which let me know  the TN could happen on the left side in the future( awful news)while I am fighting the Monster that currently lives on the right side of my nose.Have neuro appt in 10 days .I am looking forward to it.I am on 3x75mg Lyrica which lets a lot of pain in and the terrible side effects but am going to quit and replace with Tegretol.How do you open a discussion please? Can you get away with just dropping 25mg for a month and replace with Tegretol and how to do it? So many questions; so little time. Best wishes to all
    • Valkyrie
      Valkyrie maggie80535

      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 maggie80535

      Posted

      Hi Maggie,

      I was on tegretol for about 7 years.  During that time I tried other medications because I was aware that tegretol can be hard on your organs.  But none of the other drugs helped so I stuck with tegretol.  Anytime there was a medication change it was always under the supervision of my neurologist.  Generally, you have to taper off one drug while starting the other.  As far as the TN happening on both sides of your face, that's very unusual and so hopefully you won't have to face that.  Good luck to you.

    • maggie80535
      maggie80535 Valkyrie

      Posted

      Hi Valkyrie. I thought I was so clever taking extra Lyrica but of course not.luckily was able to slip back to 2 x 75mg . Joined Lyrica Survivors group.Presently cutting oxycodone 5mg in half but will fib and ask for stronger..I am on theGold Coast. Tegretol 200mg was prescribed by a doc  who should have known better.I nearly fell off our retaining wall.This is why I'm not on Tegretol as I feared it. Wrong one to fear.best wishes and thanks for caring.
    • kenleigh
      kenleigh Valkyrie

      Posted

      I'm having mine on June 4! Looking forward to hearing how you do and sending positive thoughts your way!
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