I too, went to a pain clinic for a while. It was under the dept of
anesthesiology at Hopkins. My neuro was out on sick leave
and a substitute, who had no time for my problems,
referred me to the Pain Clinic.
After 4 different med trials, injections of different sorts
and no relief - I went back to my neurologist (Hopkins' neuro dept head)

Anesthesiologists have tunnel vision. They use numbing drugs for everything.
If it can't be done with knock-out drugs, they're not interested.

You need a neuro who specializes in PN, with a good number of satisfied PN patients, as referrals.
Check references.
Ask specifics.
Don't settle for less.

Neurontin for neuropathic pain – does it work? The answer for me and from what I have read and heard (even from my neuro) is: - only to a limited extent and for a limited period of time - and that’s if you’re lucky.

I commenced at 300mg 3 times a day way back in 1994. I then kept returning to my neuro requesting an increase - due to increased pain – on average every 4 to 6 months. I reached the maximum allowed in the UK which is 3600mg per day in about 1996. Due to the fact that Neurontin was no longer stopping my pain increasing I have tried Lyrica on 3 occasions. The most recent attempt was just a few days ago and each time the side effects were just too much. Last week I took just 4 X 50mg capsules and on waking my vision was blurred and remained so for about 5 hours.

I desperately wanted Lyrica to work because my pain has almost stopped me from walking or standing. If I did not have oxycodone to give me a little help I would be a wheelchair case. Withdrawal from Neurontin – unless one can tolerate Lyrica – is no go territory, especially for someone of my age (74).

I would advise anyone considering taking Neurontin for neuropathic pain to think hard and long before entering into what is virtually a lifelong addiction to a drug which at the best gives only short term relief before requiring titration and at the worst is totally useless.

I envy Bob and his success with his conversion to Lyrica and hope with all my heart that he and others who have done the same don’t eventually find they are having the same experience as I (and heaven only knows how many others) have had with Neurontin.

Once PN has become established with no obvious cause (idiopathic), one only has pain killers (mainly narcotics) to help get through each day. Even where one has been able to stave off the worst pain for a while with any form of exercise that can be tolerated, it will inevitably end in the taking of strong analgesics.

I have seen 3 neurologists over a period of 16 years since my PN commenced during which time I have read many books and spent hundreds of hours of research on the internet. I am sure many here have done the same. I have also spent several thousand pounds (2 dollars to the pound!!) on devices and supplements. None has been of any help with the pain. I can accept the overblown claims of the companies who make these devices and supply the “wonder” supplements but I cannot accept the overblown and in many cases false claims of so called reputable pharmaceutical companies. Neurontin is one of the worlds largest selling drugs and mostly for neuropathic pain. How do they go on getting away with it? This extract from Boston.com has the strongest ring of truth - quote: “Other documents show that Pfizer intensively promoted the drug for neuropathic pain, despite advice from the company's consultants that it didn't work and an opinion from the FDA that the agency would not approve the drug for that purpose without further evidence”.

I wonder just how many sufferers out there are slowly titrating their dosage with no knowledge that it will probably end in taking a massive dose, then after realising they can no longer get their doctor to increase the dose they are back exactly where they started. For those who experience long term placebo effect – and that is almost impossible to prove or disprove – I hope it will last forever for them, for they will never know.


Neurontin for neuropathic pain is in my opinion utter garbage and dangerous garbage at that. It would seem to me that early diagnosis is the only hope of putting a stop to years of suffering. The difficulty is that the average sufferer does nothing for too long right at the start when symptoms are often slight and doctors – if consulted at all – are very reluctant to send the patient for all the necessary tests required in order to find out whether the patient’s “weird” descriptions are real or just imaginary. I had a great problem in convincing the doctors and neuros that I was genuine at the beginning of all this.

One of the most frustrating things now is that my neuro would be more than willing to give me a prescription for Sativex – a derivative of cannabis if only I had MS. It is known to help relieve pain in some sufferers. He also understands that Neurontin is now quite useless and the problems I would face regarding withdrawal. One final worry is that with the world in financial free fall will the drug companies cut back their limited research on neuropathic pain or on the other hand does it really matter, bearing in mind PN is little spoken of in the wider world? These 2 facts have surely brought about the lack of effective drugs for PN available in the 21st century.

Please everyone give much thought before embarking upon treatment with Neurontin.
You might end up like me.

Tony

How are you doing in general? I've been thinking about you.
Are you still in that "bad place"?

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 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 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...

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.