green

Hello All,

I actually did OK. In the past six days I've exercised every day. I ran Friday, Sunday, Tuesday. I lifted weights at the gym on the other days. I can't do lower body weight lifting because of a leg injury.

I'm feeling run down today, and I've felt run down in the past few days, but I also noticed that I've been pretty productive. I am going to take tomorrow off though - six days in a row straight exercise is too much. I'll take a break tomorrow and then run Friday morning again. Thank you for the advice and support!

Pistol,

Your hypothesis that POTS has been around at comparable levels of incidence in the population throughout the recent historical epoch, and is not, therefore, likely to be the result of some new toxin or pathogen being introduced into the environment, is intriguing!

Do you have any evidence to support it? I am curious. Without more evidence, it seems just plain impossible to say.

I see evidence of POTS in my Dad. I've talked to him about his exercise intolerance and told him "it sounds like you have a milder version of the autonomic dysfunction I have," but he doesn't seem interested. I've also seen it in my sister, plus my sister has a history of fainting from orthostatic stressors.

Despite all this - you know there really isn't FAMILY history. I remember we all used to go to the park as kids and bike around. Every weekend for many years the whole family would be biking or roller-blading several miles. We didn't get sick back then. But, it is possible that it's just that we're all getting older now. And anyway, we are just one sample.

So, IDK. 

>So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I> >seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. >I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to >stop.

I had some strange pains in my body in the first two weeks on mestinon. The main side-effect I have is tension in my throat, loose bowels, abdominal cramping and some light-headedness that is somehow, but indescribably, different from the light-headedness I experience as part of POTS. 

Wintersown

I am glad to hear you're doing well on mestinon! It has been helping me too. Please keep us posted as to whether you find your benefits at your current dose taper off.

Did your doctor say anything about potentially raising the dose? I am curious about other people's experiences - I think my doctor said we could titrate up, but I lost my insurance because my work contract ended. I have a new work contract with the federal government, but we are furloughed for the shutdown. I can't get anymore medical attention until the shutdown ends.

So, I am taking 90 mg. of time-released mestinon 1X daily. I suspect I need to raise my dose. I could double my dose, but then I'd only have enough mestinon for about another 32 days.

> Shorter - and milder - exercise three times a day is probably - in my experience - much more gentle and healthy for the body than rigorous exercise. 

Maybe, but if you look at the Dr. Levine protocol, they recommend getting your HR waaay up there (I think it is 145+ bpm) after many months of training. I was definitely at that point of training for awhile. 

I wish there were some objective biomarker of whether I'm overdoing it or not. I looked into HR variability at one point; I even went to see a researcher at a local University. But she told me: there's no consensus on HR variability and what it means. (weird twist: AFTER telling me to ignore HR variability because it's scientifically unsubstantiated she went on to tell me that I had a traumatic birth and will need to undergo 'rebirth' therapy to recover from my condition. Super-weird, disappointing experience with a top-tier research University)

True to form: I was insomniac last night after my run. Today I have rubber leg syndrome. 

This condition is so freaking weird.

On this forum I have complained about "over-exercising" before- how I thought that exercise was the best treatment for POTS and trained up to running half-marathons at a decent pace, before I realized that I was always in a fog and unable to make progress on my dissertation. Within a few months of giving up on cardio almost entirely, I finished my dissertation and earned my Ph.D.

Well, now I am on mestinon (90 mg. time-release, 1X daily). And about a month in. At first, I was doing a lot better, but in the past 10 days I had a bad cough, wasn't sleeping well, and noticed I was back in this weird fog.

Today I thought "well, life is the pits again, I guess I better at least try to do some exercise," so I went for a run. I just ran for 30-50 minutes, and most of it was ~5 mph (on a treadmill), with BPM maxing around 145. And then afterward I ate a small meal. And I felt great! My mind is so clear! I applied for TWO jobs in one afternoon (I just landed a job, but was immediately furloughed by government shutdown, and now I'm going to run out of health insurance, probably before the new job starts...so poor and anxious!) 

If I am right and I understand how I relate to exercise, then I will feel bad tonight and not be able to sleep. Then I will feel worse tomorrow. But we will see.

I guess one thought I'm having now: exercise always seems to give me a temporary boost, but that boost went away for much of the past year. I'm thinking now that that's because I wasn't doing long solid slogs of cardio. The temporary boost seems to require consistent high BPM - for at least 20 minutes or more. For about 9 months I was on an experiment to try low-BPM, high-resistance recumbent biking. I thought "maybe I should train up my leg muscles and keep my HR down." But I now think this was the exact opposite of the best kind of exercise for me. Probably a mix is best, but replacing running with recumbent biking was a step down for me.

Maybe half-marathoning was just too much? Or rather maybe I just never really fully adapted up to it! That's another thought: I used to run pretty d*** hard, but only once or twice a week. Maybe that was just too hard too infrequently. 

Gossammarr - yes. I think I know what you are talking about.

But, all my dissociative feelings have always been brought on by using anti-depressants and then going off of them.  Dissociation lingers indefinitely, declining asymptotically with time. 

But up to 25% of the troops deployed to Iraq in 1991 reported Gulf War syndrome. That is not so rare! 

I thnk I'm going to stop taking mestinon and do a genetic test for myself. I can look up this enzyme and maybe figure out how to evaluate a genetic test to find out if I have the less active variant of butyrylcholinesterase.

>My only comment is hindsight is 20/20. During that time they used what they thought would work. Same for dysautonomia. They prescribe what they think will work. In 20 years to front line treatment may be different and we will know that we really shouldn't have done something even though it seemed like a good idea at the time. 

Sure, StayAtHomeMom, I agree that it is often only possible to determine that a chemical has certain negative effects for a subgroup of the population long AFTER it has been administered to a large and highly representative sample of the overall population . BUT,.... we now know all this stuff... so why not test patients for the genetic predisposition BEFORE giving them mestinon?

Has anyone else read about the connection between mestinon and gulf war syndrome?

Apparently, people with a certain genetic disposition are thought to be sensitive to possible interactions between mestinon and pesticides (like DEET). The issue is that troops were given mestinon to protect them against nerve gases like sarin during the Gulf War. At the time, they thought that the Iraqis might use sarin against the troops. 

The idea seems to be that Gulf War Syndrome was caused by three things:

 (1) A less active genetic variant of the enzyme butyrylcholinesterase  . 

(2) Exposure to pesticides or nerve agents.

(3) Taking mestinon (they took 30 mg. every 8 hours for up to 21 days, so said a different site I found)

https://www.militarytimes.com/veterans/2015/01/27/study-links-genetics-anti-nerve-agent-pills-to-gulf-war-illness/

This seems bad, especially because another article I found says this:

In Britain, soldiers given the nerve-gas pill but not sent to the Gulf complained of suffering from the illness. The MoD said British troops had been given the same pills as their American counterparts. But a spokesman added that UK personnel had not been exposed to pesticides containing neurotoxins. (emphasis added)

https://www.independent.co.uk/life-style/health-and-families/health-news/pills-blamed-for-gulf-war-syndrome-1023096.html

So maybe all you need is (1) and (3)! That could be any of us! Does anyone think I am missing something here?

Well, today I took the mestinon and went on a 30 minute run and now 3 hours later I am at work, but nauseated and anxious. 

But, I also took some provigil, so that's probably why I am so anxious.   Not having a good time. 

No idea why it would have been smooth sailing yesterday, but today it would be nauseating. Maybe the nausea is just a byproduct of the anxiety. 

Best,

Green

I took the mestinon for the first time today. The doctor said he was prescribing the lowest dose, but clearly he got it wrong because they filled a script for 180 mg. It was scored, so I broke it in half and just took 90 mg. 

I didn't notice much, maybe I was better today, but it was hard to say. I am mostly excited about the possibility that it could help me exercise more intensely and with greater regularity, but I didn't feel up to exercising today either. I am planning on going for a run tomorrow. 

I am still very much in a funk. I have no motivation. It's concerning - I used to have a lot of drive. What is my problem? 

I am thinking about mixing the mestinon with rhodiola rosea, but concerned about interactions.

Best,
Green

They found pooling in my legs at Dr. Stewart's lab in NY.

How did they do it? I can't remember now if they used infrared sensors or had me submerge myself in a bath and measured displacement while standing vs. while seated. Hmmmm....

Thank you everyone.

No one knows what is wrong with me, but the only diagnosis is POTS. I have sensitivity to orthostatic challenges (heat, dehydrating, elevators, standing still, make me tired and drained) and PEM (post-exertional malaise).  I also have difficulty getting moving - physically and mentally - in the mornings, brain fog, and I fatigue easily doing office work.  Dr. Stewart in NY said that I have POTS w/ blood pooling in my legs. and evidence of peripheral autonomic neuropathy.  My BP is always low normal and my HR elevation on standing is only borderline unusual. 

We don't know what kind of POTS it is, but I am pretty sure I do not have the hyper adrenergic subtype.  I could have something like Mythenis Gravis, or a mild version at least, going on. Especially when things are at their worst, I become extremely fatigued from repetitive motor tasks.  An example is: scrubbing dishes, my arm just quits. Or moving my eyes back-and-forth quickly - my eye motions become eratic, and I have to rest.  But, this comes and goes.

Green  

Hello All,

My doctor is trialing me on time-release mestinon. I've taken mestinon before, but as a sustained-release, and at a low dosage. 

It has been awhile and I've gotten more sensitive to medications in the past few years. In general, I've kind of gone downhill overall - I'm also out-of-shape physically.

Sometimes people have really bad experiences with mestinon. Did anyone break the time-release pill up and try a small dose at first?

I'm hoping that mestinon will help me exercise without being so fatigued that I'm useless, so that I can get back in shape.  And I hope that my having gone down-hill is mostly due to being out-of-shape. 

But we will see.

Thanks in advance,

Green

Thank you, StayAtHomeMom

I will try Doo Gro. 

I think that I am both losing hair follicles as well as losing thickness in many of the follicles that remain. But, it isn't patchy, just thinning/receding.

>Yes it does lower BP in its generic form minoxodil was used as a blood pressure drug , I think it was in the 80s it was noticed that it prevented further hair loss 

But my understanding was that it is a blood pressure drug when administered orally. Topically, one would hope the effects would be local instead of systemic. 

Thanks, dancer65. I own some infrared lights, and I might use them on my head instead of rogaine. 

Interestingly: I bought infrared lights a long time ago because of the research on LLLT and cognitive enhancement. I thought LLLT would help with my brain fog. I would use the lights all over my body too - because of the research suggesting it can enhance your mitochondrial functioning. I had some mixed results, and now I wonder if the reason why is because infrared is a vasodialator. Maybe it was just too much vasodialation.  

The drug that helps me the MOST remains nicotine. And I understand that is a vasocostrictor, so I may have more of a problem with constriction. I also have the worst symptoms in the heat.

I could not find hypotension listed as a side effect of topical rogaine. It may be that I'm hyper-sensitive. I think that I am a slow metabolizer of toxins, since this is common among caucasians and since a small dosage of coffee can keep me awake 8-12 hours later. 

Well, previous to stopping the rogaine, I talked to my doctor about how much worse things have been for me and we made a plan. I'm going to stick with it, since this improvement could be an aberration: I'm still going to get an EKG tomorrow and then try taking time-release mestinon.  My understanding is that mestinon provides some vasoconstriction. I'm mostly hoping it will help me deal with exercise intolerance so I can go back to running and biking, 

Super-cold where I am right now and I'm still having my usual winter blues: hard to get motivated, attention-span is impaired, BUT...it's NOTHING like the general loss of muscle tone and vitality I had a week ago. 

Hello All,

I've been posting for a few months about how my POTS has been worse recently. Especially this winter.

Well, I stopped taking my rogaine on Sunday, and I am feeling better! This is nuts. 

Best,

Green

It got cold where I live this week: <35 degrees, with snow. I often have a chunk of good days in the fall September - November. Then when it gets cold, I become dreamy, sleepy, unable to get going at work.

I had a bad day yesterday: took coffee and nicotine because I needed to get a lot done. Had an anxiety attack. Then I was tired. Sluggish all day.

Today I am just in a daze or fog. Even though it is in the 40's. 

Do other dysautonomics experience this? I assume that it has to do with a couple things: a) dry air due to furnace operations, b) temperation variation (indoor/outdoor) being a shock on the system (I walk to and from work these days for exercise, since I'm having intolerance to worse exercise), c) the barometric pressure is always wonky when it snows.

Advice? I need to drink more water, but that's not going to be enough. 

I am going bald. I have been using rogaine for at least a year. I think it worsens my POTS. It can lower BP. 

I have taken 5 mg. methylphenidate orally off and on all my life. It is one of my preferred stimulants. I weight 180 lbs, and 5 mgs of ritalin does not cause tachycardia.

Right now the doctors are pushing provigil instead of ritalin.  They seem to feel more comfortable prescribing it, saying it is less controlled. I think this is bogus because provigil gives me more side-effects: worse mood swings, and more insomnia. 

I bought some "lyposomal vitamin C" after you posted this, Alan-pots-IST.  It does seem to help!

Lyposomal vitamin C is vitamin C that is, allegedly, dissolved into a lyposomal solution (oil-like solution) for the purposes of improving the total amount of vitamin C that can be absorbed into the blood. 

I have not had good long-term results from using cannabis. 

It is insidious for me. I feel better at first, but long-term use causes my baseline level of emotional control to decline.

I avoid it now. There is no level of usage that I consider to be a net-gain. But, obviously, this is just my personal experience. You will have to do what you need to do.

Just don't mix it with other psychotropic drugs - like SSRIs!

I have mixed feelings about CBD - it does reduce anxiety, but it often worsens my POTS symptoms. I have read that it lowers BP.