Midodrine for Dysautonomia

[Questus]

This is a very short youtube video...Very easy to watch. Dr. Fischer at the Mayo Clinic explains POTS and his experiences with patients using Midodrine vs. Beta Blockers. http://www.youtube.com/watch?v=iJ9bv7jx-Ls

This is also a good video to share with people to explain POTS in a way that will get their attention. He speaks simply, but at one point says, "POTS is real."

I'm taking a Beta Blocker prescribed by Dr. Klimas for POTs, she uses Attenol.

 

[Klmrav]

Sushi, thanks for getting back to me. So far so good on the midodrine. I also use Dr. Enlander's lectrolytes (immunoprop.com), am heavy handed with the salt (sea salt w/ iodine) and drink a lot of water. I need to do something b/c deconditioning is getting the best of me...what a vicious cycle we have to deal with. TC, Karen

 

[LaurelB]

Hi all,

I started midodrine a few weeks ago at 2.5mg once a day. I'm supposed to increase slowly. I'm taking it for OI/POTS, and because recently my pulse has sometimes gotten unusually high when I sit up or move too much.

Since starting the midodrine, I've developed an increased sensitivity to sound. It started a day after I increased my dose to 2.5mg twice a day, but it also may just be the result of another crash I had unrelated to the midodrine. It's hard to tell what's what. I've since reduced my dose back to just once a day. Anyway, has anyone else developed this symptom? I wonder if it's possible midodrine overly constricts blood vessels in my brain or something, causing my sensory overload to worsen? I have no idea. I'm too sick to do any research right now.

Also, can midodrine be taken on a as needed basis? That is, only on the days I'm experiencing extreme tachycardia (it does seem to reduce my pulse)? Or is it something that needs to be taken consistently to work?

Sorry if these are dumb questions.

Thanks.

 

[Sing]

Hi Laurel,

I've used Midodrine once a day, 1 1/2 pills of 2.5 mg strength, so 3.75 mg, which helps. Did this the past warm season and the one the year before but stopped when it got so cold here. The vasoconstriction made me feel too chilly. This cold season, I am going to try to go on with it. And I am experimenting with adding a decongestant, phenylanine, just one pill.

I expect it is fine to go on or off it. It doesn't seem to be habit forming or destructive in its effects. But, as to your question about sound sensitivity, I don't know. My sensitivity to light and sound has been increasing, but I don't know what this is due to, other than a general
worsening as I age. I am in my 60s and have had ME/CFS clearly for 15 years, though there was a run up to it, with some of the problems coming on years earlier.

I have small fiber neuropathy too. I asked the neurologist I occasionally see if Midodrine would make that worse, since it limits the blood flow to the superficial nerves. He said no, Midodrine won't make my SFN worse. But I don't know if he knows, as he, like most doctors, has no previous experience with prescribing Midodrine. I wonder if Dr. Peter Rowe, or any other doctors who do have long term experience of patients on Midodrine, do have some answers?

Sing

 

[Sushi]

Hi all,

I started midodrine a few weeks ago at 2.5mg once a day. I'm supposed to increase slowly. I'm taking it for OI/POTS, and because recently my pulse has sometimes gotten unusually high when I sit up or move too much.

Since starting the midodrine, I've developed an increased sensitivity to sound. It started a day after I increased my dose to 2.5mg twice a day, but it also may just be the result of another crash I had unrelated to the midodrine. It's hard to tell what's what. I've since reduced my dose back to just once a day. Anyway, has anyone else developed this symptom? I wonder if it's possible midodrine overly constricts blood vessels in my brain or something, causing my sensory overload to worsen? I have no idea. I'm too sick to do any research right now.

Also, can midodrine be taken on a as needed basis? That is, only on the days I'm experiencing extreme tachycardia (it does seem to reduce my pulse)? Or is it something that needs to be taken consistently to work?

Sorry if these are dumb questions.

Thanks.

Hi Laurel,

I took midodrine very successfully for OI .... for 2 weeks. And then very suddenly it gave me really bad symptoms. It was one of those situations where you hold the phone for hours trying to decide whether to call 911.

Most do well with midodrine, but just watch closely for any alarming symptoms. For me, I think it raised my blood pressure very high even though I did not lie down while it was active in my system. I have known a few others who had a bad response to midodrine and I know that you have to lie down a lot, so just monitor yourself.

I didn't, however, notice increased sensitivity to sound--just the prickly sensations and feelings of cold. For some reason this drug's affect in a patient can suddenly change. For the first two weeks I was delighted as it really helped a lot with OI. I was taking a low dose twice a day--sorry I don't remember the dose now.

Later I took a very low dose of strattera (it took over a month to slowly titrate the dose up to "low!") and strattera worked just as well for OI--for me. It was a drug that my autonomic specialist had good luck with.

I hope this drug does good things for you.

Best wishes,
Sushi

 

[robinhood]

I took midodrine for a couple of weeks about 3 years ago. Ever since then I have had constant pressure in ears...I would describe it like when you are on an airplane or when you are swimming underwater. I was wondering if anyone else has had this or any lasting effects from the drug? It goes away if I lay down, but otherwise it's always there. And if there's any way to fix it? Thanks.

 

[ramakentesh]

the japanese medication is L-DOPS or Droxidopa. Supposed to have a smaller side effect profile. Butchers broom also works in a similar way without causing supine hypertension or cold feet and hands.

 

[Sing]

Ramakentesh, tell us more about Butchers broom....

Droxidopa is going to be marketed in the USA most likely. It is on the fast track for approval by the FDA and we will hear by sometime this March! It will be called NORTHERA--look it up. It sounds very promising for those of us with NMHypotension. Because all we've had so far is

Midodrine, which I take too. It constricts the outer, small blood vessels (causing itching and tingling) in order to confine the blood to the core, so that more will make it all the way up to the head. I only take it in the morning so that it is worn off by the time of day I may be lying down. And I've calibrated the dose so that what I take does help somewhat with the NMH but doesn't cause my BP to go so high when I lie down. As I also have small fiber neuropathy at his point, I don't see that constricting small blood vessels, depriving the skin of blood, is a great idea, frankly, though the Neurologist claims that the
Midodrine won't make the neuropathy worse. Anyway...

I am sure looking forward to trying Northera, off label. It will be officially for Parkinsons. And I've heard they are testing on Fibromyalgia. Why the heck didn't we get into the trial?

See Dr. Peter Rowe, the big expert on NMH and POTS in ME/CFS. He is from Johns Hopkins in Baltimore. http://www.cfids.org/about-cfids/orthostatic-intolerance.asp This was an excellent seminar from 2010 with Dr. Rowe explaining all the ins and outs of Orthostatic Intolerance in our condition.

That's all I know!

 

[ramakentesh]

I did see that webinar and was interested to not that he also mentioned aescin from Horse Chestnut.

 

[Sing]

You know about herbs, ramakentesh? I'm remembering Horse Chestnut as supposed to be good for varicose veins, maybe heart conditions?

My memory is so lousy, however, I see I posted a lot of the same information--so twice on one page. I must need some Butchers Broom--just looked it up!

 

[ramakentesh]

i guess its important to mention that midodrine overtime will result in downregulation of alpha 1 receptors. Meaning if you go off it cold turkey you will probably feel worse initially than when you were first on it.

 

[ramakentesh]

Thanks Sing - it is my interest area. A wise man once said to me when i was young that there was a plant for every illness. hard to say whether that is true but I dare to dream

 

[ramakentesh]

Ive been on midodrine for a little while now. Odd chemical really. Energy wise i feel like im on speed. Not anxie, just hyped up. POTS wise the first two hours seem to make me feel worse and then i feel heaps better after two hours. Not sure if this is just my body getting used to it or what?

 

[Sing]

On the other thread dealing with Butcher's Broom, I responded to you, but here I will comment that I can understand why Midodrine might contribute to a speedy feeling if you have POTS. I don't. I am almost exclusively in the NMH category--just plain hypotension. The Midodrine gives me an itchy head and cold extremities, a feeling of shiveriness all over as it constricts outer blood vessels, but it does help concentrate the blood in the core and help some with blood pressure. It enables me to go out in the morning and do a necessary errand involving fairly short walks/upright postitions. Without it, these efforts
would be very tricky and I would try to avoid them!

 

[ahimsa]

I am almost exclusively in the NMH category--just plain hypotension. The Midodrine gives me an itchy head and cold extremities, a feeling of shiveriness all over as it constricts outer blood vessels, but it does help concentrate the blood in the core and help some with blood pressure. It enables me to go out in the morning and do a necessary errand involving fairly short walks/upright postitions. Without it, these efforts would be very tricky and I would try to avoid them!

Sing, I'm in the same category as you. I have a Neurally Mediated Hypotension diagnosis, not POTS. I have the same side effects from midodrine that you mention, no other problems.

As far as how midodrine helps me, I don't always notice fewer symptoms *during* these activities but I definitely notice fewer and smaller crashes *after* doing activities that require being upright. When I forget to take a pill (even with reminders I still forget at times) it's generally not until later that I pay for it with a crash.

One other thought is that even though I don't have an official diagnosis of POTS I do wonder whether I have it now after so many years. About a year ago I measured my blood pressure while standing up, the first thing in the morning, pre-midodrine, for a couple of weeks in a row. I was surprised to find that my heart rate (which gets measured at the same time) went up by quite a bit--as high as 150 bpm. This happened quickly (maybe 1-2 minutes?) during the very short time that the automated blood pressure monitor needed to get a measurement.

I have read that someone can have both POTS and NMH at the same time. But I also notice that the categories under the overall umbrella of "Orthostatic Intolerance" (sometimes called "chronic orthostatic intolerance") are named and/or defined differently depending on the research study or doctor being quoted. So I really have no idea whether this new data of mine is useful for treatment or not.

 

[pine108kell]

I took Midorine for 3 or 4 days 2.5 mgX3. I did not notice anything; certainly did not feel better or notice any improved ability to stand upright. I do not know if that is a fair trial. Since this drug is supposed to act fairly quickly and I did not see any obvious improvement I have stopped.

I don't know if I can really justify my thinking, maybe it is the tachycardia and not so low bp, but I suspect a beta blocker might be better for my OI. Or maybe the overall CFS symptoms are so bad I won't be able to tell the difference on any drug.

The only things that have helped me get upright (temporarily) are hyberbaric o2 (big effect) and antibiotics (also big effect until I herx). I think it is the anti-inflammatory properties of antibiotics that help so much.

 

[ramakentesh]

My choice currently is mestonin (feel sleepy, slightly stoned, but mildly less dizzy) or midodrine (hyped up, cant relax but far less dizzy)...

 

[ahimsa]

My choice currently is mestonin (feel sleepy, slightly stoned, but mildly less dizzy) or midodrine (hyped up, cant relax but far less dizzy)...

ramakentesh, I'm not a doctor (nor do I play one on TV, LOL!) but I have read that some patients do better on a combination of drugs to treat their OI symptoms rather than trying to treat it with a single drug. Maybe a beta-blocker along with the midodrine (or some other combination?) would help you?

Are you working with a doctor who has expertise in treating OI, specifically your particular diagnosis? (can't find the post with your diagnosis right now - are you the one with low flow POTS?)

(If you're already doing this and I missed a post somewhere then, never mind....)

 

[Sing]

ramakentesh, what is mestonin? Maybe I shoud know (remember-- ha!) but I don't.

ahimsa, I appreciate your very clear posts. All I can contribute is this idea: My understanding is that POTS is the body's attempt to right a too low, falling
blood pressure when the body has not succeeded in managing its automatic adjustment for position. So, first there is NMH, then there is POTS. I think the division in diagnosis, or typing, comes about when one phase is much more marked than the other. In my case, my blood pressure just goes down to the 50's over something equally low on the bottom, before I must sit/lie down. This is when I test myself by standing still for up to 10 mins in the morning before pills. But, if King Kong emerged in the neighborhood and I had to try to run for my life at that point, I would suddenly get POTS--awful high heart pounding to try to overcome the low bp.

On your other thoughts, I wish there were more doctors around who paid attention to the low blood pressure, disautonomia, problems. I do not have such a doctor, but get my primary doctor to help out.

 

[ahimsa]

... So, first there is NMH, then there is POTS. I think the division in diagnosis, or typing, comes about when one phase is much more marked than the other.

Thanks, that's a helpful explanation.

In my case, my blood pressure just goes down to the 50's over something equally low on the bottom, before I must sit/lie down. This is when I test myself by standing still for up to 10 mins in the morning before pills. But, if King Kong emerged in the neighborhood and I had to try to run for my life at that point, I would suddenly get POTS--awful high heart pounding to try to overcome the low bp.

Now there's an analogy that I'll never forget - I love the image of a rampaging King Kong!