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TTS National Organization yet?

Posted by Stevew on 1/07/02 at 14:41 (069084)

Hi folks,

Has anyone heard of a national organization/support group for people with TTS?

I just got a newsletter from the Neuropathy Assoc. They have 40,000 members and 200 support groups. But, they cover neuropathy from over 100 causes. I was hoping to find a more specialzed group.

best, Steve Williamson

http://www.efn.org/~opal/tarsal1.html

Re: Steve

wendyn on 1/07/02 at 23:34 (069146)

I consider you to be THE TTS guru since you have THE official website.

I'm willing to guess that if you don't know about an organization - there probably isn't one.

Re: Steve as TTS guru

Stevew on 1/08/02 at 03:09 (069149)

Yikes Wendyn! You consider ME the TTS guru? We're all in trouble.

I haven't done much new research for the past couple of years. I actually consider THIS message board (and all of heelspurs.com to be best source of information.

The bad news is that my TTS is back - I had the surgery four years ago. Guess it's right on schedule to 'fail'. I am taking 1200 mg of neurotin a day - and the only side effects have been losing about 25% of my brainpower and 50% of my sex drive. What a trade off!

I appreciate all of the kind words that Wendyn and others have sent. It is great that the TTS web page has helped folks.

I'm going to check this board more often and be more involved. There is a lot of very good support and information for folks on this board.

Re: losing brain and 2nd brain function from neurontin, elavil, etc.

alan k on 1/08/02 at 07:02 (069158)

Sorry if that was sexist.

I may know of a solution to this problem.

I was given elavil (and other tricyclics) and also tegretol (carbemazaprine) for my nerve pain (now no longer from tts, but a neck injury). Elavil, while an anti-depressant, is also said to be effective with directly nerve-related pain (as opposed to say the pain from a broken bone).

This stuff made me so drowsy and dizzy and foggy, though it did help with the pain and especially with sleep. But my professional life depends on a clear mind so I had to find help. (Also, the anti-depressants made me depressed!)

What I tried, at the suggestion of my doctor, was a class of drugs called 'nootropics,' cognitive enhancing drugs usually used outside the US for treatment of Alzheimers and Parkinsons. I started with the oldest and most tested, Hydergine and Piracetam.

Wow! They cut right through the fog. I understand Steve's post well, and those of others with spinal problems who take Neurontin, Tegretol, or Elavil. Yuk, Ick, blah. Some people just really hate these meds, as I do. But after just one dose of nootropics the side-effects were wiped clear, and I had great brain and 2nd brain function (sorry again). The latter function is also a great cure for depression!

In fact I ditched the other meds and found the neuro drugs actually helped with my nerve pain itself (no clinical support on that). I now take a combination of nootropics and brain/nerve function supplements and have found it a tremendous help. I especially find that after researching the supplements that support brain and nerve function, I had significant results with nutritional supplements in dealing with pain. I do not use the usual herbal treatments for pain such as bromelain, etc. I have found so much help from nerve-vitamins, etc. that I am astonished that there seems to be so little talk of that in pain management, when it seems obvious that supporting nerve function could help with directly nerve-related pain.

Please understand that I am not a doctor and this is just a statement of fact about what I have done, and not a suggestion or advice for anyone. Read at your own risk. I have hesitated to post on this since I have found no studies or even message board posts anywhere that confirm the pain-fighting properties of such use, and absolutely no information on drug interactions. And of course one should not mix meds without the supervision of a doctor. I include this as information only which one should discuss with a doctor if you need to cut through the fog or even if you are not on meds and are looking for help with nerve pain.

Piracetam has been in use for at least 50 years and is a non-toxic substance that stimulates the transmission chemistry of neurons without stimulating the rest of the body (i.e. no rush like caffiene, only a subtle feeling of clarity and wakefulness). It has no known serious side effects at low doses, and because it is non-toxic there is no amount that can cause an overdose. Some people recommend a high 'attack dose' of 2,400 mg or more in the first day so that you can feel the effect clearly, but I found that there was a bit of a crash after that and I do not recommend that, by no means.

Hydergine also seems to be a very safe drug. It stimulates the conversion of energy in the brain, stimulates the formation of new dendrites in the neural net, and also subtly stimulates the metabolism. Both hydergine and piracetam are also powerful free-radical scavengers in the brain, and enhance circulation there. They are sometimes used synergistically with other circulation enhancers like Gingko Biloba and Vinpocetine, which are supplements in the US. This means that lower doses of all are used when used together. Supplementation with Choline or Lecithan is recommended.

Further information on these and other 'smart drugs' can be found by starting with the Cognitive Enhancement Research Institute's site, which is ceri.org (or maybe .com or .net). This appears to be a fairly neutral informational site. Web searches using 'nootropics' and 'smart drugs' will turn up more sites than are linked at ceri, where you can purchase these drugs in a fuzzy legal manner from overseas pharmacies.

I will perhaps post on this again, though I am a bit reluctant. The results for me however, were quite significant.

Re: one more warning

alan k on 1/08/02 at 07:25 (069160)

I forgot to say that you need blood tests on liver and kidney function, and afterwards periodic monitoring, before using these or many other drugs, as the manufacturers state.

Re: Steve

wendyn on 1/07/02 at 23:34 (069146)

I consider you to be THE TTS guru since you have THE official website.

I'm willing to guess that if you don't know about an organization - there probably isn't one.

Re: Steve as TTS guru

Stevew on 1/08/02 at 03:09 (069149)

Yikes Wendyn! You consider ME the TTS guru? We're all in trouble.

I haven't done much new research for the past couple of years. I actually consider THIS message board (and all of heelspurs.com to be best source of information.

The bad news is that my TTS is back - I had the surgery four years ago. Guess it's right on schedule to 'fail'. I am taking 1200 mg of neurotin a day - and the only side effects have been losing about 25% of my brainpower and 50% of my sex drive. What a trade off!

I appreciate all of the kind words that Wendyn and others have sent. It is great that the TTS web page has helped folks.

I'm going to check this board more often and be more involved. There is a lot of very good support and information for folks on this board.

Re: losing brain and 2nd brain function from neurontin, elavil, etc.

alan k on 1/08/02 at 07:02 (069158)

Sorry if that was sexist.

I may know of a solution to this problem.

I was given elavil (and other tricyclics) and also tegretol (carbemazaprine) for my nerve pain (now no longer from tts, but a neck injury). Elavil, while an anti-depressant, is also said to be effective with directly nerve-related pain (as opposed to say the pain from a broken bone).

This stuff made me so drowsy and dizzy and foggy, though it did help with the pain and especially with sleep. But my professional life depends on a clear mind so I had to find help. (Also, the anti-depressants made me depressed!)

What I tried, at the suggestion of my doctor, was a class of drugs called 'nootropics,' cognitive enhancing drugs usually used outside the US for treatment of Alzheimers and Parkinsons. I started with the oldest and most tested, Hydergine and Piracetam.

Wow! They cut right through the fog. I understand Steve's post well, and those of others with spinal problems who take Neurontin, Tegretol, or Elavil. Yuk, Ick, blah. Some people just really hate these meds, as I do. But after just one dose of nootropics the side-effects were wiped clear, and I had great brain and 2nd brain function (sorry again). The latter function is also a great cure for depression!

In fact I ditched the other meds and found the neuro drugs actually helped with my nerve pain itself (no clinical support on that). I now take a combination of nootropics and brain/nerve function supplements and have found it a tremendous help. I especially find that after researching the supplements that support brain and nerve function, I had significant results with nutritional supplements in dealing with pain. I do not use the usual herbal treatments for pain such as bromelain, etc. I have found so much help from nerve-vitamins, etc. that I am astonished that there seems to be so little talk of that in pain management, when it seems obvious that supporting nerve function could help with directly nerve-related pain.

Please understand that I am not a doctor and this is just a statement of fact about what I have done, and not a suggestion or advice for anyone. Read at your own risk. I have hesitated to post on this since I have found no studies or even message board posts anywhere that confirm the pain-fighting properties of such use, and absolutely no information on drug interactions. And of course one should not mix meds without the supervision of a doctor. I include this as information only which one should discuss with a doctor if you need to cut through the fog or even if you are not on meds and are looking for help with nerve pain.

Piracetam has been in use for at least 50 years and is a non-toxic substance that stimulates the transmission chemistry of neurons without stimulating the rest of the body (i.e. no rush like caffiene, only a subtle feeling of clarity and wakefulness). It has no known serious side effects at low doses, and because it is non-toxic there is no amount that can cause an overdose. Some people recommend a high 'attack dose' of 2,400 mg or more in the first day so that you can feel the effect clearly, but I found that there was a bit of a crash after that and I do not recommend that, by no means.

Hydergine also seems to be a very safe drug. It stimulates the conversion of energy in the brain, stimulates the formation of new dendrites in the neural net, and also subtly stimulates the metabolism. Both hydergine and piracetam are also powerful free-radical scavengers in the brain, and enhance circulation there. They are sometimes used synergistically with other circulation enhancers like Gingko Biloba and Vinpocetine, which are supplements in the US. This means that lower doses of all are used when used together. Supplementation with Choline or Lecithan is recommended.

Further information on these and other 'smart drugs' can be found by starting with the Cognitive Enhancement Research Institute's site, which is ceri.org (or maybe .com or .net). This appears to be a fairly neutral informational site. Web searches using 'nootropics' and 'smart drugs' will turn up more sites than are linked at ceri, where you can purchase these drugs in a fuzzy legal manner from overseas pharmacies.

I will perhaps post on this again, though I am a bit reluctant. The results for me however, were quite significant.

Re: one more warning

alan k on 1/08/02 at 07:25 (069160)

I forgot to say that you need blood tests on liver and kidney function, and afterwards periodic monitoring, before using these or many other drugs, as the manufacturers state.