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green

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Posts posted by green

  1. Hi all. I am confused or uncertain about issues related to the 'medical consensus' on dysautonomia. Can anyone answer:

    1.) Who do you think are the consensus-shaping experts? Do most people think that Dr. Julian Stewart/Levine, The Mayo Clinic, and The Stanford Autonomic Disorders Team are the research leaders within the U.S. on POTS and dysautonomia? Are there other research leaders of note? 

    2.) Have any of these research leaders produced books or review articles on their understanding of what is going on with POTS? 

    3.) Which professional medical organizations work on POTS and/or dysautonomia? Is there a research journal dedicated to autonomic disorders? 

    4.) Who is working on POTS and/or dysautonomia in other countries? Can they talk to researchers in the U.S.? Would we even know  if they're out there? (i.e. if there are a bunch of Japanese scientists out there working on POTS, would we even know?) 

    By way of explanation - for years I have thought of myself as having dysautonomia and POTS. I once even saw Dr. Julian Stewart's lab and they indicated that my condition falls more into the venuous-pooling-in-the-legs category (whichever that is). I want to double-check the research consensus on exercise being the basic standard for treating my subtype of POTS. I've noticed that there's research suggesting that exercise can make CFS worse, and I've wondered if that research might have more relevance for me than the research suggesting graded exercise helps.

    On a personal note: I've been baffled with regards to exercise recently. I know my POTS was best years ago, during a period when I was doing no running, but recumbent bicycle riding. It seemed to get worse gradually during periods where I returned to running - first in college (for 8 years), then later in grad school (2 years of half-marathon training, with speeds in races >90% of the men in my age group, speeds suggestive of a HIGH degree of cardio-fitness). And, currently, I am doing just 30 minutes of recumbent bike riding daily at high resistance, and I seem to be doing A LOT better. 

    It seems that I adapted to hard cardio - in the sense that I could run fast and long - but did not improve my POTS. At the moment, it seems that I am de-conditioning (as I get out of shape) from hard cardio - for I am getting slower and more easily winded - but my POTS is starting to get better again. And yet, there could also be some special relevance to the fact that I am engaging in heavy resistance on the recumbent bike.

    Personal experience is my gold-standard: whatever works for me is what I will do. I don't care about the medical consensus. I will trust my own experience. And yet, I have to admit that there are always potential confounding factors obstructing straightforward assessment of my own personal experience. For example, the period during which I was doing better, I was also in California for some of that time, I had less stress, I was younger, I consumed a different diet and took different medicines. 

    It is so hard to navigate having a long-term condition like POTS, for which the medical community has something to teach us, but the state of the research is still fuzzy and ill-formed.To illustrate: Compare the idea that there are multiple types of POTS to the idea that there are multiple types of HEPATITIS. There's real strong consensus on the existence of different forms of hepatitis - there are well-established diagnostic tools with high specificity and accuracy at identifying A,B, and C, and there are different vaccinations for each of A,B and C.   To my knowledge, this is exactly the opposite of the situation with regards to the different POTS subtypes. And why is this? 

    Green

     

  2. Yes. Mornings are bad for me. Really, my brain doesn't start to boot-up until around 2:00 PM. Sometimes on a really good day, things start to boot up at 11:00 AM. 

    I wake up at 6:00 AM and eat a big breakfast, so that I can distribute some of the negative effects of eating (post-prandial stupor) to a time in the day when I am not very functional anyway.

     

  3. Hi,

    I am sympathetic to your view that the POTS focus is a problem. When I was first having trouble with orthostatic intolerance, I was desperate for help. I sought help from doctors by trying to ensure I got labeled 'POTS' by failing a TT-test. I felt a lot of anxiety about how at one point I 'passed' and thus did not have POTS. 

    I've done the TT three times, and had 1 result that indicated POTS and two that didn't. Eventually, I was able to reconcile myself to the reality that I have orthostatic intolerance, and, fatigue that worsens with changes in the weather, with heat, that makes it hard to stand still for long periods of time, without feeling that I needed to label it POTS. 

    But, I used to be really intense about it, because I thought POTS medications would help me. Nothing ever really helped though, and I guess now that I'm reconciled to the idea that medications are not the answer, I feel less distressed about the need to ensure my condition is labeled POTS.

    I do wish that they had found the underlying cause of my condition and helped me to treat it, but my sense is that the science isn't really at the point where they can definitively label what's wrong with me. 

  4. Has anyone tried Kratom? 

    One website says "It can increase your energy levels by optimizing certain metabolic processes and impacting hormone levels. This is a result of increased circulation, despite its soothing nature, and a general increase in oxygenated blood to areas of the body that needs it, combining with increased metabolic activities to provide a burst of energy. For sufferers of Chronic Fatigue Syndrome kratom leaves are often an alternative, natural solution."

    I almost bought some Kratom today, but I tried it in Florida a few years ago and became sick.

    Sincerely,

    Green

     

     

  5. Hi,

    Yes, nicotine helps. Nicotine helps me more than midodrine. There's a vasoconstrictive effect from nicotine, but also there's a cognitive stimulating effect. It's also easier to titrate your nicotine consumption to your needs - you can consume more until you're at the dose you're most comfortable with.

    I recommend using snus and not smoking or chew. Studies on Swedish snus suggest very few health risks. Now,I don't know if you can infer from the studies on Swedish snus that American snus is safer than cigarettes.  I suspect it is, but I also wish I had the energy to drive down to the tobacco store and buy the Swedish stuff instead of just using what I can get at the gas startion. 

     I also use nicotine patches - I'll cut a 21 mg patch into 1/4ths and use 1/4th per day.  No cancer risk there, but harder to titrate your dosage. 

  6. I am an on/off again marijuana user.

    I love it short-term - it really helps me focus and get things done. Smoking is better, but hard on the lungs. I've emulsified the product in oil many times, but I tend to overheat the oil and burn out the non-THC elements. I'm getting a modern slow cooker for Christmas so I can cook the oil more effectively. 

    Long-term - I tend to get lazy and irritable. So it's a once-a-week thing for me right now. 

    I've had issues with it making me nauseated, dizzy, and causing POTS symptoms. Sometimes it does, sometimes it doesn't. I do not understand why.

    I also like CBD oil for anxiety, but I am trying to cut back because it is expensive. The brand I buy OTC is 2$/day at the rate I've been using it - that is too much to pay for a pill.

  7. Has anyone been following this research suggesting that histamine receptors mediate the post-exertional drop in blood pressure in athletes with fainting issues?

    "There is reason to believe that histamine is the primary vasodilator contributing to post-exercise hypotension, but we cannot say for certain,"

    https://www.eurekalert.org/pub_releases/2006-10/uoo-htt101006.php

    It makes me wonder if I could just take a cocktail of OTC anti-histamines before I run to avoid post-exertional malaise. 

     

     

     

  8. Phenylephrine

     

    I took some phenylephrine recently and had an easier time standing and talking to people.

    It is a decongestant found in OTC products. Has anyone had any experience with it?

    It raises blood pressure, but in a weird way that could be dangerous. Here is wikipedia:

    The primary side effect of phenylephrine is high blood pressure. People with high blood pressure are typically advised to avoid products containing it. Because this medication is a sympathomimeticamine without beta-adrenergic activity, it does not increase contractility force and output of the cardiac muscle. It may increase blood pressure resulting in a slow heart rate through stimulation of vascular (likely carotid) baroreceptors. A common side effect during IV administration is reflex bradycardia.[16] 

    I liked it. It was really easy for me to stand and talk yesterday. I am going to take more. I wonder if other people have tried it?

     

  9. HI Janice:

    > Do you know that this can also happen due to the irregular response of your immune system in the body.

    No, I didn't. Do you have any sources on this?

    Have you ever gone for the whole internal body check up to find out the main reason? I think irregular blood flow in the body and hypertension too result in sleep apnea to most of the people.

    No. What is a "whole internal body check up"? A few years ago, I complained about general malaise to a doctor and he prescribed testosterone, which didn't seem to address the problem.

    >I personally believe that if a person is healthy by his mind, no disorder can affect him, and the best to make mind happy healthy in by giving a cool and calming massage to body everyday. I >know I sound off topic, but it does affect positively to all your body action.

    I believe you that massages and positive mental health can contribute to proper physiological functioning. Thanks!

    Hi Don,

    So you did not have apnea, but a sleep study lead to your diagnosis, right? I am in the boat where, I SEEM to have a problem with sleeping and breathing, but the sleep studies say otherwise.

    Thanks!

  10. Hi,

    Does anyone have resources on disordered breathing?

    I have many of the symptoms of sleep apnea, but cannot get diagnosed. At times, partners have told me that I gasp in my sleep, or wake up shouting. I went through a period where I would wet the bed (as a grown adult) a couple times a month. I often feel like I am not able to breathe well through my nose at night despite having had surgery to enlarge my nasal passages. I often feel worse after a good night's sleep. I often wake up with my heart pounding and can't go back to sleep, often if I do not sleep well at night I have chest pains and fluttering in my chest during the day (heck, lately I have funny pains and fluttering all the freaking time).....

    It SEEMS like sleep apnea, but I have done THREE overnight polysomnographies and NEVER had sleep apnea (except once they said I had some mild apnea if I was on my back - it seems to me that I have pretty bad apnea if I am on my back.....). I also don't meet the warning signs for apnea - I don't have a thick neck, a thick jaw, and I am not overweight.

    Related to this: I have been looking into treating to learn rhythmic breathing to relax, and I find it really hard. I get tired, I can't find a groove, my throat tightens up.  

    Anyway, I can't put all of this together - you know it is not considered pathological apnea if you wake up a couple times a night due to not breathing well. For example, a person might roll on their face and start to suffocate, then roll over again, all without waking up. It's not a big deal normally. But maybe people with POTS have an overreactive sympathetic nervous system response - so that  even one or two mild events per night leads to disrupted sleep and feeling sick the next day? If that were right, then the problem would not really be the APNEA, but the CNS overreacting to the apnea. I don't know how to treat that either though.....

    Any thoughts would be appreciated. 

     

     

  11. I've seen other people on this forum acknowledge what I've long experienced in my own life - conditions are worse when barometric pressure is low.

    I've been wondering though, whether the problem is LOW pressure or downward variation in air pressure.

    It could just be that we feel worse when air pressure drops and better when it comes back up. But, I've noticed that I also, initially, feel better when it goes higher than it has been. This occurred on a recent flight to Florida. I passed out on the plane from dizziness. Then we landed and I felt SO ALIVE! But the feeling did not last. I don't know if it was because I landed in Florida on a particularly high pressure day and then it came back down, or if I just adapted to Florida's baseline barometric average. 

    I've been wondering if I'd do better near the ocean - I used to live in LA and I feel like my symptoms were much milder than they've been in St. Louis. Again, was this because the average barometric pressure is higher in LA, or because there is less variation in barometric pressure in LA?

    Has anyone thought about this or found research on it? I wonder, for example, if I moved to some mountainous region with stable weather condition - would I feel worse indefinitely, or would I adapt (perhaps slowly) to the low pressure on the mountain?

    I found a list of cities in the U.S. by barometric pressure variability, not sure if this helps:

    https://www.securevideo.com/blog/2014/09/23/u-s-cities-barometric-pressure-variation-full-list

     

  12. Yeah. I find symptoms worsen in the heat of the summer and the extreme cold of the winter.

    I think Katybug is right about the low pressure systems - these cold fronts that come down from up North are trouble.

    I also think the dry air makes things worse - it dehydrates me and makes it harder for me to breath at night which compromises sleep. Use a humidifier. 

     

     

  13. Hi,

      I had a significant improvement in symptoms once while meeting with a doctor. I attributed it to the excitement of finally getting medical access and meeting someone who would talk to me and take me seriously - I think adrenalin is a vasoconstrictor and that temporarily improved my venous return. This can be very frustrating!

      I also have my symptoms improve when I'm sick - a fever reduces my brain fog. 

     

       

     

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