Medication, diet & supplements are the only current way to help with PN symptoms.

There are over 75 meds that are used currently, to medicate for PN. A combination of 2 or more meds, rather than just one, usually is most effective.
Searching for the right combination can be tedious, frustrating and time consuming.

It took me over a year to find out what was the most effective meds to switch to, when the neurontin stopped working effectively.

If you hang in, & don't give up - you'll find the right combination 'cocktail' for you.
If not, you'll end up suffering, and angry at everyone- and everything.

Inga - can't tell you how much I appreciate the "heads up" about Xanax and Klonopin. I've never taken anything from which I had to wean except neurontin. Although I wasn't supposed to do it, when my eyes wouldn't focus one day along with dizziness after five months of neurontin for post-herpetic neuropathy, just quit cold. Luckily, no after-effects, and the neuropathy was GONE.

echoes mentioned Wellbutrin and some kind of electrical treatments. Do any of them sound like a possibility for SFSN?

Barbara
(Sheltiemom)

That's what my doctors around here say, but other medical places (hospitals/clinics) in other parts of the country are using therapies and other things (according to forums and personal stories I have read) to treat PN. They are farther advanced than the doctors in South Dakota, and I have heard numerous times from people with PN that they were being treated with more than medication. I don't know specifically what was being done, because, like I said, nobody around here will treat with anything except medicine.

Unfortunately, I developed PN after gastric bypass surgery. My body does not respond to pills at all. I have tried several different medicines for PN, as well as pain medicines such as tylenol with codeine 3 and 4 and oxycodone. I FINALLY last week was put on the 72 hour fentanyl pain patch, and for the first time since my PN started, got a little relief. I have been bedridden and in extreme pain (I have a severe case of PN) for over 4 months--and had the PN longer than that, of course. But finally I am responding to something--because it is not in pill form. If pills are all they can do for PN--that means that absolutely nothing will help me... because of the surgery I had. And that stinks.

I know I've talked to people with PN who have been helped by things other than medicine--I just don't believe that it is all that can be done. I've read too many personal stories of people who were helped by other things.

To All,

Just want to say how much I appreciate all of your suggestions, ideas and cautions. As a short-termer and probably impatient, don't want to totally throw in the towel and just say there's nothing that can be done.

Maybe it would be better to try a combination of meds, low dose, and see how it goes. Problem is it only took one 75 mg Lyrica and absolutely could not physically function because of the way my head/eye focus felt. Lasted only a few days giving neurontin a second try (previouisly for post-shingles neuropathy 7 years ago).

Guess it's back to the drawing board when I next see the neurologist so won't address this with my PCP next week.

Sheltiemom

Is to ask for a weeks' worth of samples [IF they have them] And by day 2-3 I'll KNOW if it's turning me into a zombie or not! Then I'll try w/a 30 day script as a 'trial' beyond that. Yes it costs a bit more? But/and meds only work in some cases after you've been on them at least 2-4 weeks? But, IF it doesn't work? I don't have to worry about throwing out the rest of the 90 day prescription into the trash [and landfills? Don't like such stuffs].
Yes, by all means try different meds! I'd found one after 3 years and four different ones that'd worked for a while....but it wore off? I tapered off the neuro meds and am now on the pain meds 'as needed'. While there are times I'd like to take them more often? I don't! Why? Because I have to be off them for them to really REALLY work when I NEED them! So I go along w/a long term buzz of one sort of pain? I've got my brain working most of the time!
I'd become suspicious of meds w/neurontin....all the sales scandals and unfounded claims about it actually working for neuropathies. All it did for me on the hi doses I was on, was sleep 18 hours a day and hallucinate...when the prescribing neuro wanted to UP the dosages more? I went and got my second and third opinions which saved my life!
BUT, each of us is different! So few ever state any issues about hallicunations ever on Neurontin. I never got to try Lyrica? As it wasn't approved at the time. [Tho neurontin wasn't either? Go figger]
As Nide44 Says? There ARE others! Go thru them but carefully... READ the 'full prescribing information' and learn what dangers YOU mite have to look for! It's scary as heck? But It does make one very careful!
's to all! - j

I have a lot of nerve pain my is more pripheral neuropathy but have you tryed anything like myofacial release therapy ? I am on my 3rd session and i really have got some good pain relief from my sciatica on my left leg. I dont know how is works but i sure feel less pain from day to day.

--and where it is, there can be modalities beyond symptom-alleviating medications and supplements that can be useful.

The most obvious situation is in cases of compressive or entrapment neuropathy, in which physical therapy, exercise, and even surgery may help to reduce the pressure on nerves and help them attain better functioning. Most spinal surgeries, for example, are in the end interventions to free compressed nerves.

Some people have also reported good results with the Rebuiler system, Anodyne therpay, cold laser therapy, even hyperbaric oxygen therapy. These interventions, though, tend to help some and not others, depending on how extensive/systemic the percipitating cause is.

Nerve damage can results from so many different conditions, whether secondary to other conditons, such as impaired glucose regulation or autoimmunity, or primarily, such as through trauma, that it's difficult to make many blanket statements about treatments. Even nerve regeneration research has been very hit or miss--again, it seems to help in some causative situations more than in others.

This is why I think it is important to go through the often long investigations to find a cause for one's neural symptoms--if one can be found; this CAN have an effect on how to combat them. Too many doctors, though, are not sophisticated enough in these areas to do the work, and so a lot of people end up falsely diagnosed or un-diagnosed. For instance, how many neurologists know to check for gluten problems, which can cause neuropathy (not just digestive symptoms)? How many know there are tests for antiboides specific to peripheral nerve (not just anti-nuclear antibodies)? How many will extensively question the possibility of toxic exposure? It seems too many, if spinal MRI's don't reveal extensive compression, and if glucose and B12 tests come back OK, just shrug their shoulders, and prescribe an anti-epileptic. I'm not saying such meds don't have their symptom-relieving places, but it behooves all of us to be proactive patients with pointed questions, keep our test results, do the research, and search out the most knowledgable and complete doctors we can.

I feel for you Sheltiemom. I have small fiber neuropathy in addition to fibromyalgia. Lyrica is really the best thing I've found for pain. My doctor was smart to start me on 25 mg, working up over several years to 100 mg two times per day. I have some blurred vision and dulling of my mental capacity (which initially really upset me) but it's a trade off. Recently, I ran out of Lyrica and switched back to Neurontin, and gee, I don't know how I ever coped with Neurontin. It's way to much of a broad stroke for SFN--it's like throwing half the colour spectrum at your painting, when all you needed was blue. Cymbalta, in addition to Lyrica, knocked another 20% off my pain but the memory loss and constipation prompted me to give it up. BTW, don't do what I did: I tapered off Cymbalta over only 5 days, and subsequently suffered crushing migraines and brain zaps for the next 6 weeks. Despite my comments, I am still in the woods with my illness (more in a separate thread) but hang in there Sheltiemom. .

Remember, all you have to do is pay $1 per month on a bill to show intent to pay. If it takes forever to pay, it takes forever to pay. I have personally been through piles of medical bills costing us thousands and thousands of dollars over the years. I have had numerous surgeries and illnesses. I do understand...

to sum it up there is no one medicine be it pain killers, anti depressants, anti convulsants that will work for everyone for pain. There are also no treatments such as anodyne therapy, electrical therapy, cold laser therapy, nerve release surgery that will work for everyone either. The main reason to try to find your cause is if you can you may be able to treat it or control it and thereby slow down or even reverse your neuropathy. If you are at the beginning of the PN journey and throw up your hands and say there is nothing that can be done you are doing yourself a great disservice. There are some of us on here who have had most of the possible testing and still nothing was found as far as a cause goes. At that point you have to come to terms with it and do what you can to alleviate and make the best of the symptoms. What i see on here lately is many new people who have only had pn a short time already throwing up their hands and saying why try, there is no cure, no treatment that works, no medicine for me, some doctor told me there is nothing to be done. You may have something that is causing it that can be controlled or reversed and you really owe it to yourself to make the effort to find out if you do.