Down to 200 mg Neurontin, tomorrow start 100 mg. Felt crummy all day - lymph nodes hurting, my cheek feels like a combination of pins/needles, electrical paddle, and swollen. At least today its mostly on on my left side. I’ve tried a cold washcloth, then I tried a hot one, there’s no relief. Can’t take any NSAID’s, tried one Excedrin and once again my GI tract starts hurting. The pain goes from right below my eye to my lips. Anyone have any remedies for cheek pain they could share? All I can do is knock myself out with a Xanax and hope its better tomorrow. Help!
Sue, I wish there was something I could do to help, for me that particular brand of pain was only helped my heat and I mean almost boiling compresses- like a hot water bottle or the camping handwarmer things you get.
But it was stopping the neurontin that finally made that element of my pain go away, but that’s another story, you can read the specifics of that in my last blog if you want, but I can’t say to anyone to stop taking them, I would have run away in fear if someone told me I needed to stop my meds before I found out they were causing the vast majority of my problem.
I’m sorry but there’s nothing else that worked for me, I wish there was more I could offer, I remember that brand of pain all too clearly. I hope and pray that you get some relief soon. Maybe the neurontin reduction will help you as much as it helped me. x x x
Grace, I'm coming in on the conversation in the middle, as it were. May I ask how you arrived at the conclusion that it was your pain medications that were "causing" your pain? Have you confirmed that conclusion with anyone in the medical profession? This is the first time I've heard something like your statement. In the great, great majority of cases, the opposite is true: patients who wean themselves down or off anti-seizure meds like Tegretol or Trileptal or Neurontin very often find their pain growing worse. And pain management tends to be more difficult when meds are again used.
Regards and best,
Red
Hi Red,
And sorry Sue, I didn't mean for this to hijack your thread. I am not a medical proffesional by any means, and am only going by my own experience and what I've found out by talking to others, and it seems it is certainly not something that has happened to only me.
I am in total agreement that more often that not when neuralgians stop taking their meds that the pain can come back with a vengeance and be far worse to control. Please don't think I am arguing that point, that is not at all what my experience has been and I guess when I mention this at all I really should quantify what I am saying. I just referred to the other thread though because it's something that's been brought up a bit in the last few days to save on going into it here.
My experience of this isn't relating to the true neuralgic pain I experience, but to the Atypical TN/ AFP that came down on me very soon after starting the anticonvulsants, I will say that while taking the majority of these tablets my "true pain" was substantially lessened, I will not for a moment argue that, but I ended up developing horrendous pain in other areas of my face, so the more pain I had, the more pills I took to take it away, but the pain got worse so I took more pills, and the pain got worse and I took more pills, it became a never ending cycle of pain, drugs and side effects that took over my life.
Now trying to cut a very long story short on another board I use there was mention of the drugs potentially causing ATN, which was a major revelation to me. So I very carefully came off all of the drugs barring the tegretol retard ( which I will say has been a God send) it got worse before it got better, but the atypical pain I was feeling virtually dissappeared in direct correlation with when I stopped the lyrica/lam cocktail.
I spoke to my pain consultant about it and she was not in the slightest bit surprised and said basically that often the when the nerves are being pumped full of so many different drugs they just can't cope and additional pain can develop, my neuro was much the same, they seemed to be of the opinion that as long as it had helped it didn't really matter how or why, just as long as the benefit was felt.
After I stopped everything but the tegretol I started to get my life back, the pain that had seemed initially to be part of the progression of the condition was in fact a side effect of the treatment, and for me stopping the additional meds was the best thing I have ever done, don't get me wrong, I still have the neuralgia (GPN rather than TN) but by removing all of the exhausting additional pain I was having, I am much more able to cope with the true pain.
Albeit that I take tegretol retard ( now exclusively except for if i am having bad day) with no ill effect pain wise, I recently discovered that if I take the fast acting carbamazapine ( any more than 200mg) on top of the teg retard, for any bad days or attacks the additional atypical pain starts to flare and I can directly associate it with the additional medication in my system.
I have been off everything else for around 12 months, but the gaba, lyrica and lam do exactly the same thing to me.
Please don't think I am telling anyone to stop their drugs, that's not what I am saying, I'm not a doctor, just sharing my own story of this, what I am saying is in my experience that was what caused the atypical pain and that it is something that should maybe be looked into further ( not by us but the professionals!) and if anyone is stopping their drugs for any reason, the other thing I will say is to do it slowly, I wasn't warned of the effects stopping could have, and I couldn't have been less prepared, but that's another story.
Anyway, enough of having hijacked sue's thread, but if you do have any more questions about it please don't hesitate to ask and I will answer as best I can
All my love Gracie x x x
Red,
My neuro warned me about pain returning and being hard to control if I cut back on the neurontin. She said I was on too low a dose. And my pain did come back with a vengeance but much later than what she thought it would. She thought it would return much more quickly. She said I didn't follow the typical pattern. She said it was important to maintain a higher dose than what I was taking.
Liz