Re: A neurotoxinological approach to the treatment of obstructive sleep apnoea

[Guest guest]

Hi Gretchen,

Can you please explain 'Neurotoxinological treatment " ? I have been diagnosed

with severe obstructive sleep apnea and I have not been successful with the

CPAP.

Warm wishes,

[Guest guest]

Hi ,

An example might be like the use of Botulinum toxin type A for some

neuromuscular disorders. Or Venom molecules. Neurotoxins are found in

a wide variety of animals, covering a great diversity from arachnids

to amphibians to mollusks to snakes. This link's info may be helpful

in understanding the mechanisms of different neurotoxins.

http://www.venomdoc.com/neurotoxins.html

This site (for kids, but easier to understand maybe) lists the animal,

the source, and the neuronal action.

http://faculty.washington.edu/chudler/toxin1.html There are also

plant neurotoxins too. I have asked Dr. Conduit about which would be

specific to use in sleep apnea. Will post when I hear.

In other words, possibly these *potentially deadly* substances can

have a " theraputic value " , although this hypothesis is in the early

stages of development.

~ Gretchen

>

> Hi Gretchen,

>

> Can you please explain 'Neurotoxinological treatment " ? I have been

diagnosed with severe obstructive sleep apnea and I have not been

successful with the CPAP.

>

> Warm wishes,

>

>

[Guest guest]

If I might interject a word here...the use of Botox (Botulinum toxin

type A) or other such neurotoxins is something to be considered

very carefully. (I am not saying that people don't take it

seriously, I'm just saying that those with CMT have to really really

explore the possibility of side effects not publically made

available)

My son who has CMT had 1 round of Botox in each of his calves that

gave him some relief and allowed him to walk heel to toe for a short

period of time. When he received the second round, several months

later - he was unable to straighten up and walk at all for about 90

days. It was horrifying. To this day, the manuafacturer of the

Botox swears it did not cause the problem, However they will not

rule it out as a possibility. Since CMT is so very different in

every patient I become really nervous when I hear someone is

considering using it.

I wish you luck with your quest. doesn't tolerate a CPAP

either, so we are still searching for some relief....

Hang in there...

[Guest guest]

,

Yes, thank you for your input. Most of us are well aware of CMT Dr.

Greg 's warning about the use of Botox for CMT. (Not recommended

by him) (you can notation of this in our Files under Medication Alerts

- click to open then go to " Additional Medications and Drug Alert for

persons with CMT.doc " from January 2007.

I used the " Botox " explanation for 's benefit, and because

this title for treatment of sleep apnea that so many with CMT have. It

is important too, to realize that this research is being done OUT of

the USA (as is much more) and only the trial outcome will be our

evidence of the benefits or not. It is also important to remember that

this 'treatment of sleep apnea' that is going on is not CMT specific,

but my original intent in posting it was for information for those

persons with sleep apnea.

I'm sorry your son has had a bad experience after his injections and

hope that PT and exercise can help loosen the tightness in his legs. I hope too

that can get the rest he needs and sleep well with a different therapy of

some kind.

~ Gretchen

[Guest guest]

Hi Gretchen -

I knew right away that you were using the Botox as an analogy...I

just figured since we have other new members to the group recently

diagnosed an extra alert couldn't hurt.... I wish I had been a

member of this group before had his Botox injections. Then I

would have read Dr. 's warning and would not have proceeded.

It is amazing to me how much research is done outside of the U.S.

and I am grateful for all of your informative posts....