I am afraid so Mrs D. I just go from day to day - however, moaning is not my style but I fear anger is. Sixteen years of what should have been an enjoyable retirement and all the dotors can offer is an occasional oxycodone. My GP thinks my PN is now showing autonomic symptoms - I won't go into details.

You will no doubt gather from my rare posting how I feel about Neurontin but this was not so much an expression of anger as a desire to warn others. I can visualise all these highly paid doctors handing out scripts for Neurontin after receiving handsome gifts from Pfizer or Park Davis. I feel passionately about this and the boston.com article really confirmed my beliefs and pushed me into posting. Sorry if it was too long. I felt like going on forever after 16 years. I can just drive - with care of course - otherwise I would be housebound.

Our national health service is a disgrace and our hospitals have so many infections that only the young and strong get out alive. And there I think I will give my spleen at least a rest.

I do hope you are in one of your good phases and if so you continue to remain there. Thank you so much for asking after me and I apologise for the vent.
Tony

vent away! we all have to let it out in someway at times.....sometimes often. I can only speak for myself but i feel angry still about the whole thing . Its not always at the forefront but its still always there waiting. I understand about the retirement and what should be a rewarding time in our lives and not what we planned for at all. Most of us grieve for our former selves at some level.

I dont know much about neurontin but the whole pharmaceutical industry and the way it operates and the doctors on their payrolls or who are funded for research and how they do the trials for their own drugs is unethical at best and in my opinion many times criminal. Another example is the american academy of pediatrics pushing for more and more mandatory innoculations for children with the state legislatures. Of course they have a vested financial interest in mandatory innoculations but their recomendations are weighted by lawmakers as coming from an objective medical organization with only the interests of children as their agenda. In some states the parents are being threatened with jail or losing their children if they object to the mandatory innoculations on other than religious grounds.

TONY!!
So good to hear from you. I've thought about you, but I'm not one to PM much. I'm so sorry that you haven't been able to get the meds to work properly for you.
Having a reduced pain level is what I wisjh for all of us, here on these boards.
(I also wish these docs could go thru what we do, as an example, for just one day!)
Why do you think that w/d from Neurontin shouldn't be done, in your case?
I'm sure you've tried methadone, over the years - but it could help titrate you down (& off).
In any case, I'm glad to hear from you.
Your posts have been missed around here.

Tony I am sorry about all your struggles. I can really relate to your anger. I have went to where I vented to now just anger almost. So lost. Anyhow on the med issue like Neurontin and those similar drugs now I am not an expert like many here but from observation and of course there are exceptions but it seems these meds alone don't cut it for most of us. I am not saying to or not to take these meds cause I have no clue. Just a thoughts I guess. Many thoughts

I had no idea there were neurologists that specialized in PN. My Neuro is wonderful, but he keeps saying he can't treat the pain, and sends me to the pain clinic for the problem. How do I find a Neuro that specialized in PN? and if I do I don't know if they would be any more willing to deal with the pain...

I wanted to thank you for your post. While Gabapentin does work (a little) for me at the moment (I am willing to accept the risks of becoming immune, as I am desperate for something to help the pain, even a little) I can understand the frustration of it not working any longer. (I became immune to Tramadol, or my pain got worse, and that was very difficult as it was one of the few things that used to help)

While I probably can't understand going 16 years with no real DX or help I can understand a portion of it. I went for 1.5 years with no real help and no DX until a Dr who saw me before (and said there was no problem) agreed to see me again (at the insistence of my Neuro) and actually listened this time and thought my history and some symptoms added up into Auto-Immune Disease (my Endo is also in on this thinking that my having some high blood sugar might be a part of the problem as well). The only problem is they are not sure if the damage done to my nerves is permanent or not and the medicine they are giving me are not for the pain, they are just to stop further damage. (But this does not help me with my current pain, and none of my other Dr.'s seem to want to do anything, they all send me to the pain clinic who wants to inject steroids.) So I do understand the frustration of it seeming like the Dr doesn't want to help or do something that might help.

I do hope that you and all of us here get some relief from somewhere or someone.

I experienced the suicidal thoughts, etc., from Gabapentin. It also, as I'm sure you know, decreases B-12. Which seemed to be a huge problem for me.

I do much better with Tramadol.

It is a search that many of us have had to go thru.
I've found that large teaching hospitals, affiliated with medical schools
with a large neuro dept. - and does research in neurology - is a good place to look.
Johns Hopkins, The Jack Miller Center, Cornell-Weill, Mayo Clinic,(and others) are good places for effective PN treatment and testing.
Where, would be dependent on where you live, and your ability to get to one of these centers, at least once - for initial evaluation & testing.
After that, a neuro who would be recommended by them - in your area, or your PCP, could do the follow up and regular visits. (Whoever would be willing to work with the PN specialists and coordinate treatment.)
I only go back to Hopkins when necessary, every few years, for follow-up testing. My PCP does the rest, on a regular check-up basis.

Thanks to a very supportive British NHS Doctor I have tried both Gabapentin (Neurontin) and Pregabalin (Lyrica) for my neuropathic pain. Neither had any effect, apart from minor side effects. My own web research led me to an article in ACNR 2003 by Jack Scadding (I haven't enough posts to be able to include the link here, but a search engine should find it for you). It is a rather dense article, but authoritative (at least according to the medics with whom I have discussed it). The article seems to confirm that these drugs are only effective in a minority of sufferers, less than one in three. Lucky you if you are in that minority, and long may it continue. I've also tried most of the other meds mentioned in the article, again to no avail and, in one case, unpleasant side effects.

Now off medication, I am less dependent on others and feel more positive about handling the pain myself.

Hi Colin

Can you tell us what dose of gabapentin and pregabalin you were on and how you titrated off of them? I am always interested to hear about the problems of withdrawal and admire those who are able to do so, especially if they were on a high dosage. I am sure it must feel good to be drug free. The trouble is that one does not know about these things when they are first prescribed and when experiencing the strange pangs of PN for the first time.

Tony