Hi, Michael:

Everybody else who has information or simply wants to read this post for his/her information, can read and/or answer.

Fmichael, are you by any chance Michael Frind? If you are, I will take this opportunity to thank you for all the advice you gave me in another forum to help my two-year-old baby boy. I decided to take a certain time to test your ideas with my treasure and, bingo! they worked. The only thing is that my son refuses to wear a mask, for fear, I think, of being rejected as different by the other children. So I have to ask the parents or other caregivers of the children my son plays with if they are sick (they know why I ask this). He is able to play no more than an hour with the other children, then he wanders around looking for me. If he does not find me, he throws such a terrible tantrum you could hear him from far away. One of the times it happened, I ran to him which, of course, my RSD knee did not appreciate. I convinced my baby to play with the other children by telling him it would make his Mommy very happy to see him have fun with other children, even if she hurts a lot.

Quote: "For many people, oral Baclofen (up to 50 mg./day) is the best thing going for CNS induced muscle spasms. Have you tried it? It takes a little getting used to, but it's more effective than anything other than cannabis, in my experience. Plus it shouldn't be too expensive."

I tried baclofen when I was in the United States. Unfortunately, at that time, I did not have the feeling of icy cold running through my veins and arteries and the feeling of insects crawling through my veins and arteries, so I would not know now if baclofen would work on these two feelings, unless I tried it again. The other problem is that my body absolutely refuses to tolerate baclofen for some reason I do not know. Baclofen gives me very strong nausea and makes me throw up sooo hard that bile comes out, sometimes with traces of blood. An American primary care doctor of mine told me it was because the stomach walls are "torn" (I do not remember the exact word she used), which makes these walls bleed.

Quote: "Another drug, typically prescribed for anxiety, does wonders for my shooting nerve pain, but it works on maybe half the people who use it. In the U.S. it's called Xanax (Alprazolam - a benzodiazepine) and I take a total of 2.5 mg./day with NO psychotrophic effects."

A long time ago, my primary care doctor prescribed Klonopin (clonazepam) for my epilepsy. I still use this medication. I take one 2 mg tablet at night. For my epilepsy, I also take Keppra (levetiracetam): two 500 mg tablets twice daily; the night time dose is taken with Klonopin and, sometimes, MSIR. I did not notice any good effect of Klonopin against my icy cold feeling and against my insect feeling (better known in the U.S. as the "creepy crawlies"). Could it be because the dosage of Klonopin is too low or could it be because Xanax and Klonopin do not have the same effects on the two feelings I have, even though they are both benzodiazepines and belong to the same family of medication, if I am not wrong?

Quote: "Finally, there's a whole class of meds called calcium channel blockers that are great for vaso-spasms and neurogenic vaso-constriction of any kind, as well as being dirt cheap, the only thing is they can't be taken if you already have abnormally low blood pressure or edema, where they will contribute dramatically to any swelling. I found out the hard way on Norvasc (Amlodipine). But again, if it works, it should be affordable for your health system."

I know you are not a doctor, but do you, by any chance, know the differences between calcium channel blockers and beta blockers?

1) Do these two types of medications have the same effects on the two feelings I described?

Since my cardiologist refused to help me on August 18, I decided, on August 20, to give it a try with my primary care doctor, even though I know full well this doctor does not like to prescribe medications for off-label uses. This is why I expected him to dismiss me. I described to my doctor all my symptoms. When he came next to me to take my blood pressure, I even touched his arm to show him that I was not lying and that my hands were not just cold, but icy cold. I almost jumped to the roof with happiness and hope when my doctor prescribed Avlocardyl (propranolol) 40 mg. This is a beta blocker. I have to take, at 9 AM and at 9 PM, 1/2 tablet of Avlocardyl for one week, then next week, starting on August 29, I have to take, at 9 AM and at 9 PM, one full tablet of Avlocardyl. Since I started Avlocardyl, even if I am still at half dosage, the feelings of icy cold and of insects in my veins and arteries seemed to have stopped. I hope my body will tolerate this medication when I go full dosage next week. I would be even more desperate to be obliged to stop Avlocardyl if my body decides not to tolerate it at full dosage. In this case, I could maybe try calcium channel blockers (this is why I asked the question #1 above).

2) Do you know if beta blockers (or calcium channel blockers) are dangerous to take for chronic use, especially with Tambocor (flecaïnide)?

Tambocor is an anti-arrhythmic with oral anesthetic effect when used off-label. I take one 200 mg extended release capsule once daily. Tambocor stopped the paresthesia on the lateral side of the scar of my left knee, who had a revision ACL reconstruction. Before, I had to use Lidoderm (lidocaïne patches 5%), which was not fun because these patches absolutely refuse to stay on my knee, even with tape. Besides that, I was obliged to use my old patches because Lidoderm is not commercialized in France and its territories.

3) Do you know if there are dangerous interactions specifically between Avlocardyl and Tambocor?

It would be too bad for me to have to make a choice between these two medications, which I equally need.

You mentioned the CT profusion study with contrast. I never heard of it, so I will do some research on the Internet to get more information about it. You say this test measures directly small vessel vasospasms and vasoconstrictions outside of the brain.

4) What kind of doctor prescribes and does this test?

5) If this test measures only small vessel vasospasms and vasoconstrictions outside of the brain, what about the large vessels?

6) Can this test measure the small vessel vasospasms and vasoconstrictions outside of the brain when they are occurring? What is there are no small vessel vasospasms and vasoconstrictions while the test is being done? Will the result be a false negative?

I have decided not to worry anymore about the costs of tests and medications in French Polynesia. A lawyer there told me the public health insurance company is obliged to pay, unless they want to get sued by me, all the way to the European Court for Human Rights. I will not hesitate to do this and they know it, which explains why they run away every time I go there. I will always fight for my rights, even if it is not easy when you have a monster like RSD living in your whole body.

I would also be interested in thermal imaging to measure small vessels blood flow. Tests, like those you mentioned, often deal with small vessels. What about large vessels? Does testing them have any importance?

Once, in 2004, I needed a scintigraphy test for my RSD. Since this test is not available in French Polynesia, several doctors (an orthopedic surgeon, a neurologist, a physical medicine & rehabilitation physician, a rheumatologist, and my primary care doctor asked to the public health insurance company's doctors that I be evacuated to France for this test. Of course, the public health insurance company's doctors refused, on the pretext that this test is useless (then why does it exist?) I was sooo angry I told the public health insurance company's doctors that they would spend a LOT of money on my medical care because, whether they like it or not, my RSD was there to stay. Just for my medications, the public health insurance company spends more than U.S. $ 600 per month, every month, for the rest of my life (I am 36, almost 37, years old). They care so little about me that they also refused to pay for my evacuation to France so I could receive lumbar sympathetic nerve blocks. I am convinced it is because I did not get these blocks (it was still not too late) that I now have full body RSD. The chief of nurses, who works at the new and largest hospital in the South Pacific (it is in Tahiti), told me that localized RSD is rare and that full body RSD is even more rare. Now that I know my rights, I will force the public health insurance company to pay for whatever I have the right to. I will always remember their famous: "Pain has never killed anybody!" Even if some people do not believe the scientific study on severe chronic pain being a killer (in another forum), I believe this study with all my strength and all my heart. All my American and all my French doctors believe this study.

Thank you very much, Michael, for all the information you provided in your message.

[fmichael]

Dear Kitty -

I don't have time right now to post a full answer to your questions, but I will later. For now, let me say how thrilled I am for you that your primary care doctor is taking you seriously! That's an encouraging sign.

Secondly, I'm not the Michael F. you know, although he sounds like a great guy. That said, as a general rule, it's generally NOT a good idea to use one's real name on the Forum, where posts are fully searchable under a proper name in Google, Bing, Yahoo! etc. In other words, everything we post is out there to be found, by anyone at anytime.

Of course, in PMs, folks can and do exchange personal identification all the time: but only at their discretion.

More later.

Mike

[Abbie]

Originally Posted by kittycapucine1974

3) Do you know if there are dangerous interactions specifically between Avlocardyl and Tambocor?

Alvocardyl is equivilant to Inderal in the U.S.

I checked on Drugs.com for drug interaction between Alvocardyl(Propranolol aka Inderal) and Tambocor. Here is the link

http://www.drugs.com/interactions-check.php?drug_list=1956-1266,1094-2330

I hope this helps.

Abbie

[cindi1965]

I have been taking 40 mg of Baclofen for years because of my Cerebral Palsy and so many people have told me about their side effects. I have never suffered any, as far as I can tell, as I have been on it as long as I can remember. I also take Klonopin and haven't had any side effects either. I have had severe side effects from Lyrica...that med is the absolute devil to me. It did a great job taking away the pain, but I hallucinated terribley with it and I felt like I was going crazy. Neurontin did the same thing AND made me temporarily lose my eyesight. Nothing like a hallucinating blind person running around the house scaring the bajesus out of my family.

After all the trials and tribulations of switching meds, I am somewhat getting as "normal" as I can be, now I take Norco, Tramadol for breakthrough pain, Elavil, Celexa, Baclofen, and Topril for high blood pressure from the pain. 19 pills a day just so I can get up and walk. I know from experience that there will never be anything to completely take away the pain. Spinal blocks are out of the question because my CP effects my legs and I will not risk being paralized. I live in an area where I have no access to Ketamine, but I am not sure if I am brave enogh to try it.

I am finally getting through to my family and friends that some days there is nothing that will help on some days and we have all come to an understanding. If I don't get out of bed when everyone else is up, it's a good idea to just stay away. Since I have come to a somewhat happy medium with my meds those bad days are few and far between, unless of course, there is an earthquake and a hurricane within a four day span and I can't walk or get out of bed, they have learned to wait on me...LOL!

I just want to say that since coming to this board, Michael, your info has been invaluable and I soo appreciate each and every post that you write even if it doesn't pertain to me, I can pass it on to 2 of my closest friends who have RSD. They are amazed, as am I, how you research and come up with the right article about any problem that someone is having.

Thanks once again

[allentgamer]

I just want to say that since coming to this board, Michael, your info has been invaluable and I soo appreciate each and every post that you write

I also want to say that Mike has been a blessing to me. I know he doesnt know how much he has helped, but this is a good place to let him know that he has been a HUGE blessing!!

Love you bro!!

[SandyRI]

Ditto!!! I love you, too Mike!! Thanks for being here for us! You are truly the best!!

XOXO Sandy