One of the doctors I bumped into while working in medical research did a study on hypotension-- the kind that happens when you stand up. It is interesting in that pyridostigmine (mestinon) and midodrine are both treatments for hypotension.

http://www.ninds.nih.gov/news_and_events/news_articles/news_article_orthostatic_hypotension.htm

Taking both meds, do you do better than just one? Does your BP get too high with both?

I remember using tilt tables to change a person from lying to standing abruptly as we measured BP and asked about light headedness. Rather exciting like an amuseument park ride ;-)
Good Luck

Hey Russ,

Thanks for pointing me to that article. I printed it and will take it with me. The doctor who is heading up the Midodrine study seemed to know quite a lot about MG and Pyridostigmine, but I'll ask him to read it to minimize the chance of unknowns.

When they originally put me on Midodrine, they said to not lie down or my blood pressure might go too high, so I have avoided it. The other day, during my screening, I had not taken any meds on purpose for almost eight hours and I was dragging when I arrived, so my pressure would have been very low. I was spacing the dosages for a long day of travel. The nurse told me to take my normal meds and within a half hour they had me lie down for ten minutes and then took my blood pressure. It was 140 over something, which is through the roof for me, and I could feel the increased pressure in my head. I'm normally 90 to 100 over something with meds and around 70 over something without them.

I took only Midodrine for orthostatic hypotension for about three years. It helped a lot with the light-headedness while standing. When I was diagnosed with MG I started with the pyridostigmine things really improved, including better stamina and no more "burning" muscles after doing a little work.

When I was in the study at Vanderbilt they measured my pressure each morning and about midday gave me one of the meds and checked my pressure to measure the effects. One thing that I found curious is that they didn't measure the pressure several hours later and in the evening. I found that some of the meds started working better after they had finished their tests and some lasted much longer into the evening. One in particular, an injection, made me feel so good that I started doing all kinds of exercises, like push-up, squats, etc. and walking briskly through the halls, but they had finished and there was no one around. They also did the tilt table test and a breathing test with two different kinds of gas. The result was that I had "pure" autonomic failure. But, Midodrine was the drug of choice and I was already on it.

After that I was tested for MG with a sweat test, a machine that shocked my hand like a strong electric fence, and another that measured and recorded nerve pulses from the lower arm muscle that controls lifting my right index finger. When MG was confirmed, they prescribed the Pyridostigmine and said that it would complement the effects of the Midodrine.

Taking both, my blood pressure does not go too high. I have never tried taking only Pyridostigmine with no Midodrine, but that would be an interesting experiment. I may try that after this trial is finished. Then, if they stop making Midodrine, I'll know what life will be like with just Pyridostigmine.

The tilt table did have that effect. But, I had a big mouthpiece for the gas tests strapped on and couldn't say anything intelligible. They also had a headpiece with a microphone listening to a blood vessel inside my head at my temple, so I had to hold my head still. Everything was wired up except my right hand, so all I could do is give a thumbs up or down or wave frantically if something went wrong.

But, I don't need a tilt table to get a cheap high. When I'm sitting I don't have the symptoms and I sometimes I will get up too quickly and take off at a fast pace, as if I'm still good health. After a few steps things start going black and I'm looking for a place to sit down or even lie down to get my head lower. So far I have only completely blacked out one time and that was about six or seven years ago and well before being diagnosed.

Again, thanks for the info. I read the reports that you post and most of the discussion threads even if I don't comment on them. And I have learned a lot from this group.

Tom

I just returned from the first phase of the Midodrine study. I take it for orthostatic hypotension. I was the only one of six who also have MG; however, I found it interesting that the group are also snowflakes inasmuch as they also have a number of other autonomic problems. They also have some similar stories as this MG group about having very difficult times being accurately diagnosed and they had a range of oral and IV medications with similar bad and good reactions.

My own experience was interesting. I continued to take the Pyridostigmine for the MG, but they took control of the Midodrine and replaced it with a control brand. The big test was to have me stand for three minutes after being supine for an hour, and that was after just waking up.

Before going for the test I had only completely blacked out one time, about five or six years ago.

So, they put on the blood pressure cuff and a belt to hold in case I passed out. I think that I made it for about a minute and a half and passed out. It was just a short nap and the doc notice that my eyes were blinking and closing and made sure that I landed nicely on the bed, then lifted my legs to help me recover.

Then they gave me the "test" Midodrine and I fully recovered within about a half hour. I felt fine the rest of the day. In fact, I was sure that I felt better on the new stuff than on the generic Midorine that I normally take. But, I realized that it could have just been wishful thinking and I was not in my normal home environment and routine.

At home, this morning I took my standing blood pressure just after waking and before taking Midodrine and it was 51 over 36 with a pulse of 86. Ten minutes after taking Midodrine it was 72/51 89 and I got up and started (slowly) doing the normal morning routine, starting with making coffee and feeding the dog. After 20 minutes it was 75/47 86 and I felt much better. After 30 minutes, 75/47 81. After 45 minutes, 116/75 65. After one hour it was 109/62 77 and I have continued to feel very good with no light-headedness. I'm on their Midodrine for the duration of the test and, I'm still inclined to think that it has me feeling better. I think it might have me five to ten points higher in blood pressure, but I didn't do baseline readings before starting theirs

So, in a previous paragraph I said that I had never taken Pyridostigmine with Midodrine and didn't know if it would take it's place. It won't. It appears that the Midodrine allows me to be vertical and functional without passing out while the Pyridostigmine gives me more stamina and reduces the muscle fatigue of MG.

So, that's my update. I hope that the info might be beneficial to someone.

Tom

I have completed the Midodrine study and am back home.

One interesting and unintended side-effect of the study was that we discovered that the midodrine that was used for the study was much better than the midodrine that most of us normally used. Only two were already using the midodrine from the company that was used, and they felt no difference. The rest of us felt much better on the test drug.

For example, the last day on the test drug I walked three laps around the building complex before feeling tired enough to need to rest. On the first day on my normal prescription, I was only able to walk three-quarters of the way before I had to stop and rest.

We requested and got letters from the doctor performing the study to our doctors explaining the unintended results and recommending that our prescriptions be changed to the better drug.

He explained to us that makers of the generic drugs have quite a lot of leeway in the actual make-up of the drug and the binding material that holds it together. (Or, something like that.)

So, it seems, that it not only matters what drugs you are taking, but that it matters who makes it and what percentages of ingredients they use.

Tom

Thanks for the most interesting, thorough report. Glad you are feeling a notch better with the new medication.

Thank, Tim

As an update, my local GP wrote a prescription for the better drug and the mail order drug company said that I could specify to only use drugs produced by the better manufacturer at no change in cost. I have to fill out a form and include the letter from the doctor who performed the research and the prescription from my GP. I'll mail it Monday.

I am taking Midodrine , and the results are fantastic, have'nt had a fainting spell in 4 months, migraines gone, no longer tired. Only one side effect, my skin gets tingly kind of like goosebumps all over, a very pleasant sensation. it's also helpe din one other area im too embarrassed to talk about.