[nukenurse]

The following drug regimen has improved me to 60%-- up to 70%. My goal is to get to 80%. If I can't get better than 60%, then I might consider surgery in the hopes that it will get me to 85%.

I start the day off with a 2g scoop of BCAA's (branch chained amino acids). I use "BCAA + G" by MRM. Has vit B6. BCAA's are neuroprotective and feed the muscles.

couple hours later --- 2mg valium with 500mg glutathione (reduced). I use Jarrow for the glutathione.

Around 1pm --- 40mg telmisartan with 10mg pqq. (25mg losartan works too, but I like telmisartan a little better).

Around 4pm --- 50mg etifoxine/stresam. (obviously you need to be in France at this time).

Around 7pm --- 2-5mg of something else (pm me if you need to know).

Around 9-10pm --- 100mg pentoxifylline (possibly another 500mg of glutathione).

If I've been killing myself at work and need more help keeping my nerves and muscles calm, I have tried using another 1mg of valium at the end of the night. I don't do it anymore because I don't really need it, and the less drugs I take, the better.


Disclaimer: I am not advising anyone to use anything I mentioned. Drugs can be dangerous. Always consult your Dr.

[Limoges]

That sounds like a hefty drug regimen. It would be great if surgery would give you some relief. Good luck to you!

[nukenurse]

Thanks Limoges.

My step father has RSD and takes some major drugs ---- just to live without pain.
He used to be very athletic and active. That life is gone ---- he lives on pain meds now. He has been on them so long now, he even has problems with intimacy.
My life was headed in that direction, until I started taking the medications I discussed. Now I work 4 days/week, jog 6miles/week at the gym, lift wieghts again, play with my young children, and snow ski every winter. I still deal with my tos every day, but as long as I take my meds when my nerves and muscles start buzzing, then it calms them down and everything is ok.

I have seen pain management docs who have prescribed lyrica, gabapentin, etc. I decided not to try them.

Losartan/telmisartan --- angiotensin receptor blockers (ARB). Not a big deal at very low dose. People live on these. There is a lot of research showing ARB's are extremely beneficial for many things in life.

Valium @ 2mg/day --- not a big deal.

Pentoxifylline @ 100mg --- that is a VERY low dose.

Etifoxine/stresam --- that is a new drug I have tried, but seems to work very well. Directions say to take 50mg, 3x/day. I only take 50mg once/day. Also, the course of treatment is 12 weeks (i have also read 8 weeks). So far I have tried taking 50mg for 8 weeks and then take 2 weeks off.

BCAA's, glutathione, and pqq are supplements one can purchase in GNC.

I have taken most of these for several years and have had multiple blood tests ---- everything checks out.

I work at a Doctor's office and see the medications those patients are on and it is 2-3x the size of my list.

Perhaps one of these days I will see a pain management doc and will decide to live on pain management drugs instead. Life is fairly good right now so I don't see pain mgmt drugs in my near future.

Surgery is something I have thought long and hard about. Tried bi-lateral pec-minor sx with no success. I am 60-70% better now and am hesitant to trade that level of success for rib removal surgery. That's a big roll of the dice for me. Perhaps if you and Nospam have 80% of your lives back (or more hopefully) in 2 years, then maybe I will fly to Boston to see Doc Donahue.

What I do is very unconventional which is why I was hesitant to post about it. However, I thought it was better to share my TOS experience, because the more info out there about TOS and what people are doing, the better (IMHO).

By the way, I just got accepted into an RN program and start very soon. I will continue to work while I complete my program. My goal is to get my nurse practitioner's license in time.

[nospam]

Originally Posted by TOStrojan

Now I work 4 days/week, jog 6miles/week at the gym, lift wieghts again, play with my young children, and snow ski every winter. I still deal with my tos every day, but as long as I take my meds when my nerves and muscles start buzzing, then it calms them down and everything is ok.

I am glad to hear this, sounds like you have your TOS well managed. I avoided surgery as long as I could. When I could no longer work (had to go on short term disability) or enjoy my friends and family without steady narcotics (I was even considering medical marijuana), I knew it was time for surgery.

[nukenurse]

why I chose etifoxine:

Taking both studies together, it may be the case that the beneficial
effect of etifoxine against neuropathic pain does not merely
result from symptomatic pain relief, but might actually reflect
the fact that the peripheral nerves are rendered less sensitive to
potential toxins. The latter action could, in turn, promote the
recovery of already damaged nerves. For all of these reasons, it is
unlikely that I am the only one eagerly awaiting clinical trials of
this drug in patients with painful

neuropathies.http://www.pharma.uzh.ch/research/ne..._Pain_2009.pdf

We have demonstrated a role for the benzoxazine etifoxine in promoting axonal regeneration in the lesioned rat sciatic nerve, either after freeze-injury or complete transection. Etifoxine is already clinically approved for the treatment of anxiety disorders (Stresam(®) , Biocodex, Gentilly, France). Daily treatment with etifoxine resulted in a two-fold acceleration in axonal regeneration, as well as in a marked improvement of both the speed and quality of functional recovery

http://www.ncbi.nlm.nih.gov/pubmed/21951109

[Limoges]

After more than 30 years of chronic pain, I was delighted that Dr. Donahue felt I was a candidate for surgery. I don't often use the word "luxuriate", but I'll tell you--I find myself doing that a lot these days--simply luxuriating in the lack of pain. It becomes such a huge part of your life you don't even realize it, from the time spent managing it, searching for ways to manage it, enduring it,...the list goes on. I wish you good luck TOStrojan.

[nukenurse]

Wanted to clarify that the regimen I listed is for days when I am working and totally active. Even then, I may not need to take pentox at night. So I may need to pop pills 4x/day instead of 5.

On the weekends or days I don't work, I usually only need to take valium, telmisartan, and stresam ---- only pop pills 3x/day.