Oh my! I went to my 1st Repetitive Nerve/Muscle Stimulator. After being electrocuted for 1 hour, the doctor said he saw no indicators of myasthenia gravis. I about fell through the chair in shock and said, "Is that because I'm ON the mestinon?" Well, he was quickly angered at my neuro whom he could not believe had sent me to this exam without taking me off the mestinon first! NOW, I have to stop the mestinon for 72 hours and go back and get cattle prodded-electrocuted- again! I burst out laughing and said to the docs- IN YOUR DREAMS! Well, I lost the debate and am now falling back down into A lethargic blob squashed flat on the floor with no life to rise up. Here's my question of serious concern: It seems to be affecting my heart and blood pressure which drops to 74/54 and jumps up to 150/110 if I get up to do anything. So, is it really safe to just stop this med suddenly for a few days without it affecting various organ muscles? Thanks for any response or knowledge. I'm about to go to ER just to be checked over before something serious happens.

Tresa, Well, it may not be the medication that is causing your BP to jump like that. You really need to have that assessed, probably by a cardiologist. Have you tried lying down for a few minutes and taking it and then sitting for a minute and then taking it again? I wouldn't suggest standing with changes in a BP like that! Make a log of that happening, including what happens with your pulse.

There's orthostatic hypotension, which is when your BP drops 20 or more (systolic) when you sit or stand up. And then there's orthostatic hypertension, when your BP goes up 20 or more (systolic) upon siting/standing.

Not so brilliant of someone to order an EMG without telling you to go off of Mestinon first.

The BP seems far more urgent at this point. Can you see someone right away on Monday? Call your primary doctor and see if they can fit you in. They may want to run some basic tests. Please take that one seriously. If you are feeling "weird" when these changes in BP occur, it is absolutely a good idea to go to the ER. You don't want a heart attack or stroke!! Not to worry you, just to state that changes in BP like that are so not normal.

I hope you have better luck with the next test.

Annie

Thanks Annie! I need a hug of encouragement. I have had cardiac tests and lungs etc-all normal - fortunately-yet I occassionally get these weird attacks -usually high BP-like 190/130!! And severe chest pain. Boils down to a potassium problem and there's kidney problems etc etc. Most of the time it has been remaining stable but I really think stopping the Mes is affecting the heart muscle or something. Im still waiting for CT scan of thymus which can actually invade your heart and other organs or be very hyperplasia etc. I hope I can hang on long enough for them to figure it out. Im checking BP every hour. Took a Xanax (my anti-anxiety drug of choice lol) to keep stress down-should help.

If you don't mind me asking, what drugs are you on? Any supplements or herbs? Always look to drugs, or food, as a cause of new symptoms.

Do you eat salt? How much? Salt can raise BP. Also, sodium and potassium work synergistically together. Has anyone done a FULL chem panel on you, in the morning while you are fasting? Have they checked any endocrine functions, such as thyroid, parathyroid, cortisol, etc?

What did they find with your kidney function? Did they find something on urinalysis or BUN (blood urea nitrogen) or creatinine?

One of the most common kinds of kidney issues is renal artery stenosis. You don't have to have only a "heart" narrowing to have your BP get higher.

Do you stay well-hydrated?

I hope your doctors will be thorough. Changes in fluids and electrolytes are not simple things. They can be very dangerous. Not a lot of doctors "get" that. I hope you will revisit all this with your primary doctor. Maybe get a referral to a nephrologist (kidney specialist) if you have a kidney problem for a 2nd opinion.

I hope you get it all worked out.

Annie

Tresa, I have some experience with this. I ended up in the ER winter of 08 cause of this in part. I sure will admit I dont know and dont think the docs do here yet which came first....chicken or the egg thing. When I went into ER in November of 08 I indeed was reducing my mestinon over manybe a month. I did this because #1 very cold weather had improved symp0toms. And #2 my body was acting 'like' the mestinon was too much. So I was down to 30mg not 60mg every 6 hours. The ER doc called my neuro and she said to go back up to 45mg and this did make me some better.

But I was leaving for Mayo that week and had a similar incident up there. I took extra mestion to literally get to the Clinic that morning. I was dizzy and woozy and had weird stuff going on. About a year later my internist said she felt I had POTS (postural orthostatic tacycardia syn). This was suggested not from ER visit but my daughter tellling doc I would get better after after IV fluids. My doc said increase salt intake (yes increase) and drink a gallon of water a day. It was amazing how jjust increasing salt can up my strength! And it wasnt as if I dont take in much salt. I'm a chip lover....it is my emotional eating thing.

Since then I have found that little doses of mestinon are used for POTS (45mg per day). Now I saw a neuro for the POTS, not such a good one, and he didnt think I had it. But I still get these symptoms. Some of the symptoms of POTS can look like the anxiety if it is strongly physical. I know the doc didnt do all the needed tests. I think I have it or something similar.

I have always had low BP. Very low. I dont know what to suggest. I just know that I wasnt having these symptoms 7 years ago. Making sure I have plenty of salt is a big issue I know now. I was cutting back on junk food when the ER visit happened.

I hope you have a doc that can help advise you.

Annie59