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About green

  • Rank
    Advanced Member

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  • Gender
  • Location
    St. Louis, Missouri
  • Interests
    Infrared light, vitamin C, to treat POTS.

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  1. green

    Mestinon Trial -- Experience?

    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
  2. green

    Mestinon Trial -- Experience?

    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
  3. 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....
  4. green

    Mestinon Trial -- Experience?

    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
  5. 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
  6. green

    Rogaine worsening POTS?

    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.
  7. green

    Rogaine worsening POTS?

    >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.
  8. green

    Rogaine worsening POTS?

    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.
  9. 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
  10. green

    Winter Blues

    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.
  11. green

    Anyone Here Use Rogaine/minoxidil?

    I am going bald. I have been using rogaine for at least a year. I think it worsens my POTS. It can lower BP.
  12. 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.
  13. 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.
  14. green

    Does Smoking Pot Effect P.o.t.s. ?

    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!
  15. green

    King Kratom

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