How much worse does this get?

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i was diagnosed with TN 10 weeks ago.  I have seen my doctor every 5-10 days since then.  Each visit my meds have been increased.  The increased meds always seem to work for 2 days then the pain is back worse than ever.  Last Thursday the pain came back with a vengeance ....could not swallow, chew, or brush my teeth, plus little electric shock stabs to my cheek.  Plus I have hives and sores in my mouth.  The doctor put me on prednisone 50 mg daily for a week and I see him next Wed.  I am currently on gabapentin 2700 and carbamazepine 400 mg.  Tell me people what else is this Monster going to do to me....prepare me please.

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  • Posted

    Stop it now while you can. Withdrawal is worse than the neuropathy. After 4800mg regular abstention and 1800mg trailer and 40mg duloxetine I am down to 100mg per day of only gabapentin. I will soon stop it. I am finding after four years the side effects of the drugs are worse than the illness pain. I am feeling the neuropathy pain worse than ever but I think I might be able to tolerate it more than the side effects. But what do I know. I only started this elimination process two weeks ago.
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    • Posted

      I think I agree with you.  I wish I had never started taking it.  And, I was only on it for about 4 months.  Entirely too many horror stories out there about the difficulty of stopping it once you start.
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  • Posted

    I'm only on 300mg, at first it made me extremely unfocused, foggy, I would forget words, but that has all gone away. Obviously I am on a very small dosage, I use it for an overactive bladder from IC. This med does nothing for myou pain. I could not handle the dosage you are on, I had a hard time with 300mg.

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  • Posted

    I staryed a taper off of 3000mg a day on 7/15, it took 5 days for me to start to feel better. Severe swelling in my joints, fluid retention? Severe feet, ankles, legs ,whole right arm. I was in so much more pain i was going to kill myself. Then a dumass doc slapped a fentanyl patch on me instead of just uping the oxycodone and now I'm feeling better in one aspect yet fighting for my life as i taper off these s.o.s patches. Good luck and emotional problems the gab came with b.s too.

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    • Posted

      POS patches, thats what I meant smile good luck. I had to reduce medications one at a time to figure out who was making my alread difficult life harder.

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    • Posted

      I have no idea, who or why someone replied "why?" It was not me. I have so many other issue right now, it's like my body has totally turned against me. I'm not sure where you live, I'm in the US and it's almost impossible to get a dr to prescribed you oxycodone, I will never see a fentanyl patch, the Dr would never prescribed it. I have IC, two ulcers in my colon, mono, anemia, and due to mono a enlarged spleen. Pain is from the IC, colon, and shoulder from my spleen. I honestly can't take it anymore. I'm on bed rest (basically)have been taken out of work, and will probably end up losing my job over this. I can't even go to the store, if I do I'm in more pain, then I usual,

      for the day. Just from grocery shopping. I sleep. More then I'might awake. I hear ya, my life sucks right now. Hopefully we all come through this.

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  • Posted

    I staryed a taper off of 3000mg a day on 7/15, it took 5 days for me to start to feel better. Severe swelling in my joints, fluid retention? Severe feet, ankles, legs ,whole right arm. I was in so much more pain i was going to kill myself. Then a dumass doc slapped a fentanyl patch on me instead of just uping the oxycodone and now I'm feeling better in one aspect yet fighting for my life as i taper off these s.o.s patches. Good luck and emotional problems the gab came with b.s too.

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  • Posted

    Hi Karen36710

    I was diagnosed with TN 3 months ago and the nerve pain was so bad I was rolling on the floor in pain. I was so relieved to be on Gabapentin that I didn't even think of side effects- what could be worse?! But I'm not the only one out there who would rather work on the pain aspect then work out how to live with the Gabapentin side effects... That said, I'm sure there are loads of people managing in Gabapentin fine- I genuinely hope you are one of them.... Although if you are not one of those lucky ones- join the club😉

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    • Posted

      At this point, I wiegh my quality of life over side effects. Again for me I'm on a very low dose, 300mg, and it does nothing for my pain, I am on it due to IC. I would literally go to the bathroom 30 plus times a day. With the gabapentin I go more often then an average person but no where near how often as I use to. If I have an IC flare up, it can be a bad time. At this point for me, it works, and is the only thing that has. I will deal with the side effects as they come.

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    • Posted

      And may I add this. As it might be true and that gaba works for some people, for me it did nothing for the pain, ever... that's why it was so easy to...up the dose, up the dose, up the dose. 3000mg a day is alot. It was the fluid build up, I believe, that caused alot more problems. WORK OUT. Go to any gym, move, sweat! That's what im doing trying to get the excess fluid out. I have severe sfpn complicated with fibromyalgia. I will find a way to ease this! Cannabis is next. But I don't like getting high so they had better have there brownie, cookie stuff together. Good luck. Don't stop, don't give up, if no one listens. Listen to yourself.

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    • Posted

      Gabapentin does nothing for pain for me either. It is the only thing that works for my overactive bladder from the IC. I will no go up any higher, to many side effects and too difficult to come off of.

      I would love to exercise, it would help with the mono, but I can't if I do anything, even go to the store, the pain increases tremendously.

      I diffently agree with don't stop, every Dr told me my pain was from the IC. I had chronic pain in my lower left side. Had a MRI, ultra sound (several) regular and internal, CT scans all came back normal.

      Went to a gastrologist, on my own, he said "I'll do a colonoscopy but I do not expect to find anything, I believe you have a touch of irritable bowel syndrome due to the stress of the IC" He does the colonoscopy, I wake up in the middle of the procedure due to tremendous pain, in the exact spot I had pain for months. I have two ulcers in my colon. The pain was not from the IC, if I did not go to the Drs I went to, almost always on my own, I would not know I have IC or the ulcers.

      You have to keep going until you are satisfied that you researched and saw every Dr you can. If I had listen to the first Dr, Idk where I would be right now. I may still be in pain now, but I would probably be a lot worse off, if I had not continued on my own.

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