This Drug Is Used To Repair Autonomic Dysfunction

[dianaD]

Hi all,

A few of you know this, but I thought it was time to share it with everyone.

Monocycline is being used for ALS, Shy-Dragers, MS, spinal cord injuries, etc., because it can repair nerves. I had a friend with Shy-Dragers (which also begins with autonomic dysfunction). He prescribed it for himself (we're both eye doctors) when he heard of the research being done with it.

In about 2 weeks, his autonomic problems were improving (prior, his BP would DROP when he stood up), and within a month he was able to get off his other meds.

I've been on it for almost 2 months now, and my improvements occured fairly suddenly at the 2 1/2 week mark. I have adrenedrgic POTS (diagnosed at Mayo) and I no longer have much tremulousness nor adrenaline rushes. Unfortunately, I still have trouble breathing, though.

I'm going to discuss it with the docs at Mayo next month, and I have an appt. with Dr. Grubb in Sept. It doesn't appear that docs have tried this drug with POTS yet, and I can't imagine why.

I am usually reluctant to discuss a treatment before it is "proven", but with pots, all treatments are what we call "off-label" anyway! And, this drug (an antibiotic used to treat ACNE!) has been around a long time, and we are aware of its side effects. It is oral, not very expensive, and familiar to docs. HOWEVER, they may not be aware of the neuroprotective effects of minocycline. My neurologist was familiar with the research, and decided to try it for me.

I will never know if I got better because of the minocycline, or if I was destined to get better then, anyway.... But NOTHING was easing the feelings of too much adrenaline. Now, that's gone. yippee.

I'd be happy to answer any questions you have. Neurologists are the most likely to know about the drug, because it's effects involve the nerves...

Hoping and praying,

[lthomas521]

Here's a wikipedia article about minocycline:

http://en.wikipedia.org/wiki/Minocycline

It says that the side effects may include dizziness. (How would any of us notice that? )

I also saw some Web sites about the use of minocycline in the treatment of ALS. Very encouraging.

What dosage are you using, dianaD? Have you made any other changes that could account for your feeling better? Please keep us posted on your progress.

[MomtoGiuliana]

That is so interesting and I would be interested to understand why it has not be tried with POTS. That is great that you are feeling better.

Katherine

[dianaD]

I take 100mg twice a day ( the same dosage that they use for acne!).

I didn't change anything else at that time. But I can't say that the adrenergic stuff didn't go away all by itself... But, nothing else in the past had really helped-- even the beta-blockers would work for a couple of days, but then I would have a bad day, and the beta-blocker seemed like WATER, it was so ineffective.

My friend with Shy-Dragers said that his autonomic symptoms were appreciably better in 2 weeks, and by one month, he was off his other meds.

I don't know why no one has looked at it with POTS. This neuroprotective stuff is fairly new, but as an eye doctor, we are jumping on it for our patients with nerve damage (from diabetes, etc.). I can't imagine that they haven't thought about it....

Please let me know if any of you have a good response to it!!

Thanks!

[rdslots]

DianaD, are they seeing the same benefits with doxycycline?

I was prescribed minocycline at about age 40 when the dermatologist determined I had rosacea, and I took it for several years before he changed the Rx to doxycycline and some topical treatments.

Interestingly enough, as I learn more and more about dysautonomias, and understand why certain meds are prescribed, I wonder if my being on an SSRI since the mid 90's, and minocycline, kept the NCS at bay, so to speak, until Fall 2003 when I experienced my first episode?

I work with a cardiologist because I do have low BP, slow HR (and may be a candidate for a pacemaker) but I sure would like to have an ANS specialist consider such a theory. Of course, there is no way (is there?) to foretell who'll end up with one of these disorders -- but lloking back, it is worth pondering.

I know little re: dysautonomias, although I have been on a campaign to read about/learn all I can, and glean info from people just like "us" at forum(s), and in support groups.

Any ideas?

Oh, needed to add: I have also been referred to a neurologist, screening for possible MS. Any comments there, too? Are most dysautonomias also screened for MS?