I am on my 4th pm doctor in a year and half. I have not got any new meds from them just 3 different big procedures to do. I understand the switching issue but if this one is not on the same page or is treating you in a wrong manner or poorly you may have to. Not all think you are going to just want meds.If you stay with this pm I would talk about your concerns and fears.

I know it is not good to be trying to deal with him as it is not helping me. I guess I will have to try to find another pain clinic/specialist (maybe one of my Dr's can recommend someone.) as I def. cannot talk to this Dr. he never lets you get a word in, and just assumes he is right about everything. He even told me once "It is impossible your pain is getting worse." I was like we don't even know what is causing my PN (we had no real idea at this point) so how on earth can you possibly know it can't get worse?

Trust me I know the furstration of doctors. I have pn and rsd and I have no clue how this happened as I am 30. I guess for me right now I am more onto trying to find relief which is scary since I have no idea how it started and my doctors don't make connections between all my issues. Getting a refferal from your doctor is an idea but I also like patient referrals. So if you can do some research on these boards or other sites with people who have similar issues who have found a good doctor I think it can really help. Often I feel doctors just refer to anyone or someone they work with rather then someone who is really good. Hang in there.

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

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.

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.