Mayo Mn Pots Clinic, Dr. Sandroni

[kitt]

More to add, but have you Googled octreotide and dysautonomia? Pretty fascinating.

Corina, why was it prescribed to you? There is so much on this. It's unusual in the U.S. Would like to hear more. How are you taking it?

One article which B Grubb was an author on suggested it was undetermined if it was the heart or the vascular system it worked on. A topic which I find when I 'dig' into issues on NCS...Neurocardio Syndrome, another form of dysautonomia.

Here's one article on orcteotide. http://heart.bmj.com/content/97/Suppl_1/A89.2.abstract

Others..All interesting. Grubb is an author on many.

[corina]

kitt, octreotide is my number one miracle med for POTS. I was pointed towards it via one of my UK DINET pals, persephone. She was treated by one of the authors of the article you linked to, G. Thomas. Also, our vice president Janie Farrens (thankful is her screen name) helped me answer questions. I know that, when "over" dosed it can cause brady. I've been on the subcutaneous injections to see whether my body could tolerate and after about 4 or 5 months I changed to the LAR (intramusculair).

It did give me liver issues at first and gallbladder problems but liver came back okay soon. Only thing I struggle with now are gall stones (quite enlarged by the octreotide). As surgery always is an issue for my body we've decided to keep it in until it HAS to come out if infected. Without octreotide I'm homebound (and bedbound on a regular base)

[kitt]

Thank you Corina,

I have lots to share but I'd like to hear why octreotide has been your miracle drug? Did your doctor explain why it works, or at least why he/she thinks it works?

Let me say how glad I am for you that you've found a miracle drug. That's a giant step in itself. Am happy for you. Very, wow...Talk about a quality of life change. That's fabulous. Think the best is yet to come for you! Let's hope.

In the U.S. I've neither heard nor read of anyone with dysautonomia taking octreotide, but perhaps it's an FDA issue, and the way health care is managed in the states. Hope to hear more about it soon.

From what I've read, (and I'm trying to glean what I can from very complex medical articles), it seems to work in a 'secondary' way as vasoconstrictor. Is that true?...Would like to hear what you've learned about it.

Octreotide is not FDA approved here for dysatuonomia, and it's not mentioned in the off label uses. It's also pricey here. Am wanting to learn more though.

Thanks for sharing,

K

[corina]

For me it works as a vasoconstrictor, I felt it working almost immediately (subcutaneous version). It is really amazing, made me see sharp and clear and kept me standing for much longer! From that time a started a rehab program and worked myself up, it was honestly amazing. Surgery last year has set me back and the octreotide wasn't enough anymore (not sure why) but we've found that adding mestinon supports the octreotide so hopefully I'm on my way back (not fully cured don't get me wrong but a much much better quality of life!). I remember someone from the USA on octreotide for POTS (can't remember who it was) telling that the octreotide worked for her but unfortunately she couldn't get it covered which meant she had to stop. When you are interested, I have an article on it (how it works on POTS/dysautonomia, I'd be happy to share! It is very expensive her too, my insurance pays about 1.100,= EURO's for it. I get a shot every three weeks, I would never be able to pay for it myself!

[kitt]

Thank you Corina for sharing that it is in fact a vasoconstrictor. I was having to read in between the lines of the studies I found. It is NOT approved by the FDA here in the states, and even if someone were to find a doctor to prescribe it off label for dysautonomia it's cost prohibitive. I've researched it and it's wickedly expensive, even if someone were to get it from Canada.

In other cases where drugs are cost prohibitive in the U.S. I know of patients who've gone to Europe and found a doctor to prescribe, gotten the meds in Europe and then brought them back to the U.S. That's an aggressive approach and I wouldn't do it with this particular drug, as I think it needs to be supervised, etc...

So interesting though! Am very glad it's helped you. Godspeed.

I wanted to share a new Vimeo. A new video about dysautonomia and features a Texas doctor who makes some bold claims which I think are a bit untrue but imagine there are several on Dinet who see this doctor or go to this Texas clinic. I think it sounds like a wonderful place to go, but it appears to me as though he's 'advertising' for the clinic. Would be interesting in hearing from anyone on Dinet who goes here? Overall though feel this is a good video about dysautonomia.

Also, he talks about 'research' they're doing. For the record the TTT tests he speaks of where they test normal people on TTT's has been done for years by Mayo. I know this for a fact. So this is not 'new' or groundbreaking research.

The Vimeo video is new though and it is about dysautonomia so feel it's well worth sharing!

Best,

K