Resource Midodrine for Chronic Fatigue Syndrome (ME/CFS), POTS and Orthostatic Intolerance

[Cort]

Cort submitted a new resource:

Midodrine for Chronic Fatigue Syndrome (ME/CFS), POTS and Orthostatic Intolerance - Drug brings relief for some ME/CFS, POTS and OI patients.

Midrodrine or ProAmatine is vasopressor/antihypotensive drug approved for use in the U.S. for the treatment of dysautonomia and orthostatic hypotension. It works by producing a metabolite which activates alpha-adrenergic receptors found in arteries and veins which then constrict the blood vessels causing an increase in blood pressure....

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[Seven]

I would not have a live without this drug. I really recommended (usually to low BP plp, BP high when crashed does not count, I mean resting BP in the low side). If you are looking to gain like 5 points on the functional scale this is it.
Start low and slow. If you are doing too much you will know by high BP or tight muscles.
NOTE: this will make you feel so well that you have to not go crazy (I made the mistake to go skating!!) so even if you feel great, does not mean all of the sudden you do not have CFS, you have to increase activity slowly until you learn your new base number.

 

[Cort]

I would not have a live without this drug. I really recommended (usually to low BP plp, BP high when crashed does not count, I mean resting BP in the low side). If you are looking to gain like 5 points on the functional scale this is it.
Start low and slow. If you are doing too much you will know by high BP or tight muscles.
NOTE: this will make you feel so well that you have to not go crazy (I made the mistake to go skating!!) so even if you feel great, does not mean all of the sudden you do not have CFS, you have to increase activity slowly until you learn your new base number.

Interesting! Glad to hear that it works. Do you have POTS as well as ME/CFS?

 

[Seven]

Interesting! Glad to hear that it works. Do you have POTS as well as ME/CFS?

Yes I have POTs also. I think anybody w the inability to be standing has some kind of OI ( in the Cfs group)

 

[Daniel B.]

I am certainly happy that Midodrine works for some people, but I think that it is important to note that it will NOT work for a lot of people. The FDA wanted to remove it from the market a few years back because the company that produces it hadn't been able to prove that it works, and because the drug had a very clear reputation of not actually working for most patients. The FDA eventually relented, but only because Midodrine is used off-label to treat other conditions unrelated to dysautonomia, and entirely unconnected t CFS/ME-Fibromyalgia.

I also speak from personal experience. I was given Midodrine in the early 1990's when it was still experimental, as I have, among other symptoms, fairly severe orthostatic hypotension. The Midodrine not only didn't work, but it triggered for me, the most severe relapse I have had in some 20+ years of CFS/ME. As it happens, none of the other patients my Electrophysiologist treated (mostly POTS) responded well either, so you might give it a try, if your symptoms fit the criteria, but I wouldn't expect too much.

If your symptoms align with the use of Midodrine, you might also consider the use of Mestinon. That has worked much better for me (it allows me to live independently, though I am still ill), and Mestinon generally has the reputation of being more effective for more patients. The biggest disadvantage of Mestinon is that a lot of the people who use it, including myself, have to also take loperamide (Imodium) to control its gastrointestinal side effects. This is unfortunate, but it is safe to do so, and the benefits are worth it for a lot of us.

 

[November Girl]

I've read that taking midodrine without adequate fluid and salt will make ME/CFS patients feel worse. It's been a Godsend for me.

 

[November Girl]

Compression stockings are also a necessary part of my treatment for OI. 30/40 strength pantyhose are prescribed for POTS. I don't have POTS, but this is the strength I need.