Mestinon!!! So far, great!

[goldicedance]

Hi, friends...Just want to let you know that I have tried Mestinon. I was put on Mestinon in the hospital because I was in such bad POTS state. I was also dehyrated.

The Mestinon is working like a champ. It is an inexpensive drug. So far, perhaps the only side effect I have had is an upset stomach--I can deal with that. I am also back on DDAVP to help retain fluids.

After 5 days in the hospital, it is oh so nice to be home. And, I missed hearing what's happening to all my friends here.

[goldicedance]

Here is the article about Mestinon's use to help up maintain blood pressure while standing but not while lying down.

Mayo Clinic in Rochester

Tuesday, October 05, 2004

Mayo Clinic Finds Effective Remedy for Blood Pressure Drop When Standing Up

Additional Resources

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newsbureau@mayo.edu

ROCHESTER, Minn. -- Mayo Clinic neurologists have discovered a drug application smart enough to alleviate orthostatic hypotension -- problems with sinking blood pressure when standing up from a sitting position -- without the unwanted effect of also causing patients? blood pressure to soar when lying down.

?This is a significant step forward for these patients,? says Phillip Low, M.D., Mayo Clinic neurologist and lead study investigator. ?This would be a good drug to provide the first line of treatment.?

The drug, pyridostigmine, has been used for years for myasthenia gravis, a neuromuscular transmission disorder. Dr. Low hypothesized that it would also improve nerve cell transmission for orthostatic hypotension patients and trigger the reflex that controls blood pressure in all positions.

Of the 58 patients in Dr. Low?s study, one-third were able to stop taking any other orthostatic hypotension medications, and others were able to lower the amount of other drugs needed. Orthostatic hypotension is especially common in those over age 70. In general, blood pressure control lessens as one ages, according to Dr. Low. Common causes of orthostatic hypotension include diabetes, autonomic neuropathy, multiple system atrophy, pure autonomic failure and Parkinson?s disease. Certain drugs, such as diuretics and medication used to control blood pressure, are also common catalysts for the condition. Studies conducted at Mayo Clinic by Peter Dyck, M.D., neurologist, indicate 10 percent of diabetics have orthostatic hypotension.

The challenge with trying to fix this condition, according to Dr. Low, is that most medications that increase blood pressure raise blood pressure in all positions. Thus, the drugs would work for patients with orthostatic hypotension when they stood up, but their blood pressure would be too high when lying down, increasing their risk of stroke. Dr. Low felt that this price was too high, and that treating with medications that raised blood pressure while standing but raised blood pressure while lying down amounted to trading one problem for another.

?We wanted a ?smart drug? that would only increase blood pressure when standing up, and not when lying down,? says Dr. Low. Pyridostigmine works at the level of the autonomic ganglion, which has minimal nerve signaling traffic when lying down. When standing up, however, nerve signaling traffic in the autonomic ganglion increases, so the researchers theorized that a drug that affected the autonomic ganglion would improve orthostatic hypotension patients? standing blood pressure but not increase the blood pressure while lying down.

After a small, open trial of 15 subjects in which the pyridostigmine performed effectively as hoped, the investigators proceeded to the current double-blinded study of 58 patients. The patients either received placebo, pyridostigmine alone or pyridostigmine in combination with one of two low dosages of midodrine, a drug previously proven to improve orthostatic hypotension.

The effects of the drugs were measured one hour post-treatment. Pyridostigmine significantly improved the patients? standing blood pressure without elevating blood pressure while lying down. The positive effects of the drug were even further improved when combined with low-dose midodrine. Improvement of blood pressure was associated with improvement of symptoms while standing.

Side effects from pyridostigmine were minor and transient, including some abdominal cramping or need to go to the bathroom more often than usual.

Paola Sandroni, M.D., another Mayo Clinic neurologist, conducted a follow-up study of the first 45 patients in the study led by Dr. Low; the follow-up study occurred an average of 19.5 months after the first trial. Detailed information was available on 32 patients, and 75 percent reported either good or excellent results from the pyridostigmine treatment. Approximately one in four were able to manage on pyridostigmine alone, and one in three needed other medications, yet were able to reduce the dose of the other medication (e.g., midodrine or fludrocortisone).

?By the time they come to see us at Mayo Clinic, the majority of our orthostatic hypotension patients have had multiple treatments and have not done very well,? says Dr. Low. ?They are very grateful to have found this drug [pryridostigmine].?

The next step in the orthostatic hypotension research will involve seeking out an even smarter drug combination involving pyridostigmine that might work on multiple levels.

A Program Project Grant for research in autonomic disorders, which was first awarded to Dr. Low by the National Institutes of Health in 1996, funded this study.

[yogini]

Goldiedance,

I am thinking about Mestinon, so it's great to hear that you are doing so well. How long have you been taking it, and what other meds are you taking?

Thanks,

Rita

[Michelle Sawicki]

It's great to hear the mestinon is working!!! You said it was inexpensive....I've always heard otherwise. Is that true, or just a typo?

Michelle

[goldicedance]

Rita..I also take neurontin and zoloft and DDAVP.

Michelle--A month's supply (90 - .6 tablets) of the generic is about $35.00.

All-I've been taking Mestinon since Saturday--for 6 days. So far, so good. I hope it continues. I feel like a new person!

[Ernie]

Hi Goldicedance,

I am happy that you finally found a medication that is working for you. Keep up the good work!

Ernie

[corina]

Goldicedance,

I was considering mestinon. I'm very glad for you you feel better and also glad your back from the hospital. When I talk to my neuro next week I'll talk about the mestinon. Thanks for sharing and best wishes,

Corina

[StaceyYount]

Hey,

Does it help with the tachycardia when you stand up . I have the hypotension but it is delayed the longer I stand the worse I get which I know we all do. But does the mestinon help with the tachycardia?

Stacey

[blackwolf]

Please keep us posted. I am looking into this as an alternative because the Midodrine is causing additional chest pain (I have enough to deal with right now).

Blackwolf

[jbbb]

My fifteen year old daughter was put on mestinon a week ago by her neuro. We started at 30-then went to 60- she didn't notice any diff. Then, we tried 90 mg, and she feels sick. Midodrine and florinef really did nothing for her. I was looking for a dramatic feeeling better- but the neruo said to go back to 60 for a while, that we might not see a dramatic diff, but it still might help her dengnerating muscles. When you said you feel great on it- what does that mean? Great in what respect? Thanks, Joan

[Nicole's Mom]

goldicedance,

In your post you said that you had been in the hospital and had been doing poorly with POTS and dehydrated. It is encouraging to hear that this drug mestonin got you up on your feet. If you do't mind me asking how long were you off your feet and dehydrated? Were you bedridden? Also how long have you been on the DDAVP? What benefit do you think you gained from that drug? You must have a really great local doctor to put you in the hospital and put ou on IV and know what drugs to try. Thank you.

Best Wishes

Beverly

[goldicedance]

With mestinon, so far I can stand up without getting bigeminy, without my blood pressure falling, and with a milder rise in my heartrate than in the past. I am a bad one to judge heart rate increases since I had a sinus node ablation many years ago.

I was pretty debilitated before I went in the hospital. I had been hospitalized for 14 days due to gall bladder problems and surgery. Home recuperating, I was not too active and began to feel worse and worse each day. Finally, I couldn't take it anymore. My doctor was concerned with the bigeminy, dehydration and inability to stand. I also had severe chills and sweats but no infection.

My doctor had been admitted via the emergency room. She contacted the Mayo Clinic (I have been there a couple times) and discussed my situation with Dr. Low et al. They advised mestinon (30 mg twice a day increasing to 30 mg three times a day) plus DDAVP.

I had been on DDAVP in the past. I am not a fan of DDAVP but I will do what it takes. I cannot absolutely take florinef as I get a never ending migraine headaches requiring hospitalization.

I have my fingers crossed that I will continue to get relief from Mestinon.

Thanks for all your well wishes.

[Nicole's Mom]

thanks for answering my questions- very much appreciated- it's so good we can learn from one another here in this forum. I have my fingers crossed for you too and a prayer in my heart.

Beverly

[DancingLight]

goldiedance,

i sure hope your much-deserved and much-needed relief continues! i hope you continue to feel well on the mestinon.

i do not know your whole story, but it sounds like you have been sick for many years without much improvement. that has been my story too! but i think you have been sick much longer....my heart goes out to you.

i hope this is the beginning of better times for you...

why are you not a fan of the DDAVP? just wondering? how much do you take? i take it too and really like it, but would like to take more to get more relief from having to pee all of the time...just curious what you felt about it.

later alligator!

emily

[goldicedance]

Hi, Emily. I do not like DDAVP because it seems so unnatural. I use 1 squirt in the morning and one in the evening.

I have been sick since December 1993, but was diagnosed in 1996. At that time there was virtually very little written about POTS. It was only through the diligence of my PCP that she was able to find a 1995 article by Dr. Low and then find a doc in my area who was an expert on POTS. I was in the cliical trials for midodrine.

Thanks everyone for your wishes.

Lois

[Herdswoman]

SINUS NODE ABLATION!!! YOUCH!!!!

OK, you just became my hero.........

Has anyone written you up in journal? Seriously. Nuking the sinus node is one way to prove that there is also a bigtime neuro link in all this mess. Now you're pioneering one of the new meds for us. I'm sure you'd rather be pioneering a space walk, or underwater soil sampling or even walking a thousand miles behind a covered wagon. After all, those things have a predetermined end point.

I had an accidental ablation of my AV node almost 2 years ago......oops. Well, I guess that's one way to prove POTS without a tilt table test, isn't it? I get along well with my pacemaker and John Dostalek at Medtronic is my main man. I call him a couple of times a year, usually out of the blue "John, can I run a chain saw? John, can I weld?" He always explains life to me......chainsaw days are long gone, though.

[goldicedance]

Herdswoman, I can top that--I also had an AV node ablation. Let's put it this way--the sinus node ablation was a terrible mistake but that was before much was understood about POTS. The sinus node ablation left me with tachycardia as well as bradycardia. After a couple years, I decided to go for the AV node ablatoin because I was getting terrible junctional tachycardia.

How did you come to get an accidental AV node ablation?

You're right about my pioneering. If only I didn't have the sinus node ablation. But, hey, that's water under the bridge.

I have tried numerous medications and in varying combinations. Some really did me in like phenobarbital and flourinef. Clonidine was not so great either.

I myself have a St. jude's pacemaker with all the functionalities. So far I am on my second pacemaker. The first lasted 7 years!

I try to carry on my daily activities. Right now I have been off work since September 20 following two weeks in hospital for gall bladder problems. That caused a set back of POTS to the extent that I was hospitalized a few weeks later.

Right now, I am feeling pretty good. Kinda concerned because of weight gain triggered by DDAVP. Life will go on even if my clothes get too small!

Have a wonderful weekend everyone!

[Herdswoman]

The sinus node connected to the heart bone

The heart bone connected to the AV node

The AV node connected to the ventricle bone

ZZZZzzzzzap, burn, oops.

I ain't right. Ain't right at all. But I sure am fun.

Ah, the story of the ablation gone wrong........abbreviated version:

I was treated for recurrent tachycardia months after delivering a healthy daughter.

Referred for ablation in preparation for in vitro fertilization and hopeful pregnancy.

Ablation worked.

In vitro failed. (cha-ching! the sound of infertility docs getting rich)

Tachycardia recurred about 2 years later.

Original Electro-doc says it's sinus, not AV node reentry. Misses POTS diagnosis.

Insurance changes.

New workup with new primary care and new electrophysiologist.

We go to the cath lab to do some EP testing.

He wakes me up on the table to say he found an AV tract to ablate.

Oops. The burn went a little too far, a little too fast.

He wakes me up as he puts a pacemaker in my hand, now telling me I am in complete heart block (CHB) and we need to put in a permanent pacer.

I've taken care of many a CHB patient and there is only one viable, long term treatment. I know what he says is true.

Drunkenly, in my Versed/Fentanyl haze, I recall telling him to put it in on the left side because my right boob is bigger than my left and that might help even things out. He starts talking more to my husband and cruises right past that comment. Nobody laughs. I'm not sure why, after all this is SOP for CHB, what's the big deal? I go to sleep - probably the wisest thing I did all day.

I watched myself on the monitor in CHB all night with external pacing patches hooked up front and back......just in case we need them.

I wonder "If I go into a ventricular escape rhythm, will these girls know enough to PACE me first intead of defibrillating me into the next dimension?" I relay my experiences with this very thing to my night nurse who swears she will pace me out of V-tach and not defib me out of my last viable rhythm.

I wait to see if the inflammation in my heart will subside enough overnight in order to find a fragment of conduction tissue still intact. Will that 'p' wave conduct? It looks like maybe......it does? No. It doesn't.

But it does snow. A LOT.

We go to the OR 2 hours late.....and wait another hour and half for my doc. I love the man, but I swear he'll be late to his own funeral.

I'm worried about the type of pacer I'll get. I'm worried how much this will change my life. I want to race again, I need something that will be very resistant to electrical energy fields. I just sent my motor to the engine builders and I know I am on the hook for at least 4 grand. I want to talk to my doctor. I look up at my nurse anesthestist and tell him I want to stay awake.

"OK," he replies, dropping the hammer on big syringe labeled "VERSED".

Mmmmm.....all the way to the bottom, good to the last drop is Versed. I cruise along on peachy, happy clouds, waiting to hear Mark come in. He's late, way late. The natives are getting restless. Off at the far edge of my cloud I hear one of them say "What could possibly be more important than the patient who is on the table?"

My body is too heavy, too comfortable, but my eyes whip open. "Page him and tell him to get up here" I snapped.

The OR is suddenly, completely and utterly still. Pin drop quiet. Far away, past my cloud, at the edge of darkness I hear someone whisper "whoa".

I smile as my eyes close. That'll teach to 'em to watch what they say. Don't they know that hearing is the last sense to leave? Besides, they SHOULD page him. I TOLD them I wanted to stay awake and so I am. Besides, he IS late and I'm..... sleepy. I want to talk to my doctor.

Suddenly, Mark is at my head. I hear his voice. I open my eyes and turn towards him. He seems slightly annoyed that I'm awake, yes, definitely more annoyed than surprised. I think to myself that there's no surprise here, you just don't know me that well. Yet. My stubborn goes a long way, doc. I ask my questions, he says all the right things but I can tell I'm being patronized. Prolly because he's pissed that he's late and I'm not asleep.

The room gets dark. Anesthesia wins.

Edited November 8, 2004 by Michelle Sawicki

[goldicedance]

Herdswoman,

You are too much. Your ablation and pacer experiences are worse than mine. You sure had an overzealous ep doctor.

Actually, I was up the whole time the pacemakers were put in. I can to this day remember the sounds of the stapler stapling the incision close. I was not feeling all that much better after the lst pacemaker insertion. Turns out, the lead was loose. That had to be fixed. Made the docs promise I wouldn't hear the staples again. Then last fall after 7 years it was time for a new pacemaker.

My pacemaker is on the right hand side. I would have preferred the left since I am right handed.

You are a real character! I enjoy so much your posts. They are funny, too the point, and true.

What year did you have the ablation?

[Guest tearose]

goldicedance, how are you feeling on the mestinon? I've been looking forward to hear your update. Do you feel any better? Any side effects? Can you do more?

take care, tearose

[goldicedance]

So far it's now been 10 days since I added mestinon to my regimen. I still feel pretty good and am contemplating going back to work within the next week. The DDAVP has helped me stay better hydrated. The mestinon has helped me immensely remain upright. Other than perhaps a mild stomach upset now and then from the mestinon, I have had no side effects.

Yesterday, I went to my internist for my hospital follow-up--she thought I looked like a new person. It kinds feels like being reborn again--being able to walk, stand, etc. I should point out that sometimes after waiting in a line or something like that I can feel my heart beating faster so I know to sit down.

I go to the Mayo Clinic in December for another evaluation.

My internist again reminded me that it is so important not to stay in bed or inactive. She said that if you put a healthy person in bed for more than a couple days that he/she would also develop POTS like symptoms. I have heard that caution before from the Mayo Clinic. I urge all of you to do the most you can to stay out of bed during the day. Even if it means staying in a lounge chair with your feet up.

I think I am going to try water therapy as I way of strengthening my muscles. Water with its anti-gravitational effects is supposed to be wonderful for POTS.

I would also encourage you to ask your doctors about letting you have a try with mestinon. If it doesn't work, then you can stop. But you won't know if you don't try.

Through my 10 years with POTS, I have done lots of trying with various combinations of drugs and, of course, salt additions. I refuse to stop trying and my husband is the most supportive person I know. Over the years I have had numerous hospitalizations (some for as long as 2 weeks--wow that freaks the insurance companies out) when POTS has reared its ugly head.

Good luck to all and I will keep you all posted.

[Merrill]

FANTASTIC!!!! I'm really happy for you! May you only continue to improve!

What is DDAVP an acronym for? I don't think I'd heard it before ... Also, if you don't mind, what symptoms does it treat?

Thanks,

be well,

m

[goldicedance]

DDAVP is short for desmopressin something or another. I take it to retain fluids. I have a terrible time retaiing fluids. Without it, at night I could get up 6-8 times to urinate. For me it helps prevent dehydration.

Goldie

[DancingLight]

merrill,

DDAVP basically is used to replace the anti-diuretic hormone in the body that we already naturally make.

dr. grubb often prescribes it for nighttime use for those who wake up to pee a lot so that they will retain more fluids by morning and also not wake up so much during the night.

we should naturally produce more ADH during the night so that we don't pee as much as we do during the day.

do you remember people talking about diabetes insipidus at all? well, anyway, those folks don't produce the hormone and take DDAVP to replace it so that they don't flush all of their fluids out. their urine output is high and their urine is very dilute.

i had the water deprivation test for diabetes inispidus...a nightmare for me...and they said i had 'partial' diabetes insipidus. i am not so sure about the accuracy of the test, but, anyway, that is what they said. that would mean that i produce some ADH but not enough. i have to pee constantly but don't know if it is DI or just the POTS. still working on figuring that out.

so, i take DDAVP at night and during the day and it is a big help.

anyway, that's the scoop....just think how much you now know about this drug now? ha!

later alligator!

emily

p.s. goldiedance....yeah!!! i hope this drug keeps working for you.

[goldicedance]

Emily, From your mouth into G-d's hear!

You're explanation of DDAVP was right on target. I have taken it in the past and am on it now. I too was tested for diabetes insipidus. That was negative. Although Dr. Low said that it it looks like a duck and quacks like a duck, the treat it like a duck--hence DDAVP. Do you use the spray?

Lois