Has any one found a way to reduce neuropathy pain? My husband is 16 years post treatment. In addition to losing the ability to eat and speak clearly, he is experiencing severe neuropathy in his head and neck. He is unable to tolerate drugs such as Gabapentin & Lyrica, Capsacin does not work, and high doses of Oxycodone only alleviate the pain for about 20 minutes. He is unable to take time realease meds because of the tube. Oh and everything seems to make his blood pressure plummet (to the point of body tremmors) The DRs. have no suggestions and I am hoping someone has found something that works.

jjinc

Let's just say that "a friend of mine" has found that marijuana through a vaporizer helped his oral cancer neuropathy pain. Recently, MD Anderson Cancer Center released a study where they used a marijuana derivative that stopped the pain but without the buzz.
Here's the link MD Anderson MDA 19 neuropathy pain Perhaps you can get him into an MDA 19 study. Since you are in California, your husband does have an option for medical marijuana on the state level. He could try it and if it works, buy a vaporizer so he would not have to smoke it. (just google Volcano vaporizer)
I do know that my California Multiple Sclerosis friends swear by it also.

Charm

Ditto what "she" said. You would technically qualify for medical marijuana in all states that allow it. Try the Extreme V Tower, I heard. It is much cheaper than the Volcano.

I think the body tremors are part of the disorder. I, too, am experiencing intense pain from the top of my head to the bottoms of my feet. Some are just constant horrible burning like a toothache, others are sharp stabbing pains and others are the result of huge golf ball sized knots that happen on muscle contraction induced cramps. My hair feels like each hair is on fire at times and most pain that is debilitating occurs where the tendons attach to the skeletal structure on muscles that are twitching non-stop. The progression for me has been a knawing pain like a crook in your neck and then the muscle gets weaker and then the fasiculations or twitching starts and then escalates with the muscle involved withering away.

I have been told it is Post Radiation Lower Motor Neuron Syndrome and was caused by radiation to my neck/cervical spine. I have also been told there is no treatment or cure. My case was studied at a radiation oncology seminar and the conclusion is that it happens in about 1% of the people treated with radiation and sometimes light regular massage reduces the intensity of the pain. The toughest thing is to try and go to sleep with the entire back, shoulders and neck in constant movement to the tune of hundreds of fasiculations per minute and sometimes a rapid fire burst of fasiculations in one muscle group that lasts 5-10 seconds. It's like a fireworks show from the inside.

The mm does not stop the problems but it takes your mind off of it, so I have been told.

Ed

I forgot to mention I have tried gabapentin (neurontin), baclofen (used for the cramping in ALS), cymbalta, lyrica, zanaflex, methacarbamol, nortriptylin (pamelor), tramadol,vicodin, valium and ativan. Ativan is a quick hit for the muscle pain and the valium is about the same but lasts longer. It is very important to keep the potassium levels up and regular sleep.

Ed

I ENDED UP GOING TO A PAIN CLINIC BECAUSE THE PAIN WAS SO BAD. THEY DON'T GIVE PAIN MEDS BUT DO INJECTIONS. IT HELPED. STILL HAVE PAIN BUT NOW I CAN TOLERATE IT

Ed

I know we all have to be circumspect here due to legal issues, but after all your experiences with standard pharm, I can't help but hope you visit your vaporizer friends. I had not heard of the tower but it is half the price of a Volcano, although all the credible online reviews acknowledged the Volcano's superior quality and German durability. I think you really added to the dialogue here with your catalog of remedies.
FYI, I'm not a she - but if I were, I'd be an uber bitch.
Charm

jjinc

Just a follow up to encourage you to continue to seek a solution to the neuropathy pain despite the apparent lack of encouragement or resources from your doctors. I've taken this observation to heart: [quote]Bernie Siegal, founder of Exceptional Cancer Patients, observed that survivors who beat the odds against cancer and other life-threatening diseases were usually �bad patients.� These patients typically questioned their doctors and took an active role in their recovery, whereas �good patients� did just as they were told, questioned very little, and often died right on schedule
[/quote] As more of us survive, and time goes on, and the insidious long term damage from radiation goes on, I expect to see more questions like yours on this forum. so sorry you have to be the pioneer.
Charm

Sorry, I couldn't remember and was too lazy to look it up. My wife may let an uber bitch in her Audi, though, if you ask nice.

I am totally convinced the trials and errors of uncharted territories just piles on additional side effects that are often worse than what you are being treated for and are a total crapshoot as far as how long they last. I had something that was working for years fine (thank you Gary for the suggestion years ago) and my oncologist moved away. Now they want to use Botox with some issues of it's own or start burning nerves. We tried some lidocaine in the neck to "simulate" expectiations of botox and I could barely move my arm, my ear was numb and my hearing on that side sounded like a blown speaker for 4 days. The weather was changing so I did not notice if it contributed to the changes in swallowing. I was assured if I could not swallow, it would resolve itself in 90 days or so. I am a bit claustrophobic and I suddenly felt like someone was holding my head under water just to hear it!

Anyway, something takes the edges off while I embark on a jurney to seek more knowledge.

To paraphrase, this too shall pass, but I will add only if you put forth the effort to seek solutions.

I have heard a rumoe that a friend of mine had liquid THC from a medical MMJ store in CA. He just put it through his PEG\\Steve

Thanks for the suggestion. "A friend of mine" has used it and found a few strains work somewhat, but like pain meds, does not last long.

From everything I've been reading it is almost hopeless..however, I continue to believe there must be something. I am convinced it will be in the holistic world and must keep looking.