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Three times a week, I do 1 hour on an elliptical trainer keeping my HR < 140 BPM. I have stuck with this for about 3 months.

Do you have a reading source on GI bacteria?

This interview with Dr. Ignarro is informative; he says that you can significantly boost your nitric oxide production by taking a combination of amino acids arginine and citrulline along with antioxidants vitamin E and vitamin C. I did not know that you needed to combine amino acids with antioxidants to increase your NO levels. But then again, in this thread some people are talking about NO excess being a by-product of angiosten-II abnormalities (too much or too little, I don't know) or even a direct contributor to autonomic dysfunction, and, since excess NO is a cause of inflammation, maybe it is unwise to try to elevate one's NO levels unless you know that yours are low or normal? I think I reach this tentative conclusion according to the same logic that led Dana to conclude that exercise is unlikely to help some groups of people with dysautonomia: >Yes, the study that my son was in last summer is designed to prove that most POTS >patients have too much NO. My son, who does not have enough NO, is considered to be in >the minority - at least according to the medical team at Beth Isreal Deaconess Medical >Center. Dana: Which is another reason why I don't see how exercise would be good at all for a subset of POTS patients. It would just increase free radicals even more. This is all theory of course, but so is everything else that is presented here.

It means that the medications I was originally prescribed to treat my autonomic problems were no more effective than placebos.

I have been buying nicotine patches, cutting them into pieces with scissors, and slapping them on to get a little boost in energy and concentration.

Jeez! That's pretty awful! What kind of exercises were you doing? My idea of "core strengthening" is to do planks, situps on an ab ball, pelvic thrusts, etc. I can't imagine tearing something up that way. A sobering ancedote.

I've heard that core training is part of Dr. Levine's exercise protocol for POTS. It was something that I've heard people talk about for sometime. But I can't find any basic research on the relationship between the core muscles and blood pressure regulation I searched on pubmed for: core muscles AND POTS core muscles AND autonomic core muscles AND blood core muscles AND blood pressure skeletal muscle and autonomic regulation None of these search terms turned up anything. Does anyone have any information on how we know that core strengthening helps the body cope with autonomic dysfunction? Thanks.

I have posted about my testosterone issues before. I have had POTs-symptoms going back to, at least, 2001. I had a hormone test that revealed low testosterone last fall. Since going on testosterone I have felt better. I believe in this link between hormones and POTS: If you have low testosterone and you are a male, then you will not be able to significantly recover from POTS via exercise. But what other link is there? don't know.

How to build muscle? Make sure you do not have a testosterone deficiency! I did. And I was not building any muscle even though I was going to the gym 3 times a week to lift weights. It was a cruel scam! Now I am building muscle and I only lift 2 times a week. I posted about this a few weeks ago,

Hello All, An anecdotal reflection on recovering. I have been having much less trouble with brain fog and fatigue this past two months. I had been trying to build stamina and muscle through exercise for years, but no avail. But this past fall my GP found out I have low testosterone, and put me on supplementation. There was no immediate change. I went back to weight-lifting and gradually increasing my cardio load for a couple months before I started feeling better. I gained some noticeable strength and muscle during these months. I wonder if the combination of exercise and testosterone supplementation was necessary for me to start feeling better. Perhaps neither alone would have ever worked? The bottom line: check out your testosterone levels, if you are a male. No one thought of this, not even the two POTS experts I saw!

Yeah. I take Amantadine. I have stuck with it for a year now, with periodic holidays. It is not a perfect medication for me, it wakes me up in the early morning with a fast heartbeat for the first few weeks. It is better than anything else I've ever tried for helping with fatigue and mental sluggishness.

I use creatine powder. I think that maybe it helps a little with dysautonomia by increasing how much fluid you retain, since the creatine causes the muscles to take up more water. I feel like if I take creatine, I am a little less symptomatic during exercise.

This seems like seriously bad news for Droxidopa. CHTP has had to change the endpoint twice now - originally they tried to use a measure of dizzyness as the endpoint, then they used a broader measure of OI symptoms, now they want to use # of falls? It seems to me that this would be bad science - if you tried to change what variable you were measuring after you had done the study. I suppose that since # of falls was a secondary endpoint, this is not what they were doing. They had already decided to measure # of falls before they did theexperiment. But it still seems fishy. What stops a company from declaring many secondary endpoints and then adopting whichever one they want as the primary in retrospect? It's like if I were to say: "I either have the power to make a flipped coin come up heads two times in a row OR I have the power to make it come up tails two times in a row, OR I can make the coin come up heads once and tails once." Then you do the experiment, and I say "See? I told you I had the power to make the coin come up [whatever combination it came up as]" It doesn't seem right to me. They shouldn't be allowed to keep changing around their measurements.

Do you mean... is the problem in the muscle or in the brain? I am interested in all the responses you have received on this topic from people who seem fairly confident about the source of their weakness. How do you tell the two apart? I have no idea which kind I experience. The only way of testing that I can envision would be to take four different measurements and then compare them: (A) Not-Feeling Weak Strength Test (1) Muscular contraction by means of voluntary effort (2) Muscular contraction by means of direct electrical stimulation of the muscle ( Feeling-Weak Strength Test (1) Muscular contraction by means of voluntary effort (2) Muscular contraction by means of direct electrical stimulation of the muscle If you lose more strength from A(1) to B(1) than from A(2) to B(2), then that would be evidence that the problem is more in the muscle, than in the CNS. But I think there are innumerable practical obstacles to performing this experiment. Please let me know if you have another method.

Indeed. Your use of the term 'mania' is a fair description. It has certain superficial similarities to mania, and also to hyperthyroidism. I have discussed this with a psychiatrist who did not believe it was bipolar disorder, and I have had my thyroid tested numerous times without abnormal results. we may be experiencing the same phenomena. Although, I generally do not sweat - I look flushed, but no unusual sweating. Otherwise what you are describing sounds like me. I am still in my UP phase, but inadequate sleep has been making me more edgy. I had plans to go to the gym tonight, but now I'm wondering if that will push my HR up and consolidate the crash.

Does anyone experience brief two-three day periods of remission of dysautonomia symptoms during which they feel like they have a fever, lose their appetite, become hyperactive and gradually experience the hyperactivity transmute into anxiety and tremulousness, which leads to insomnia, and then a crash and return of symptoms? I am there right now. It's mysterous and I want to take an ice bath. I have no idea what triggers this, but its very annoying.

I am so sorry to hear that you are having a hard time. I went through a period where I was incapable of focusing on anything, and while it was the worst experience of my life. All I can give you, as far practical advice, is: 1 try to change your scene. Anything that can get your mind off of yourself and how you feel will make you feel better. If you can go out and interact with people, in any capacity that is the best thing to do. 2 Try to replace agonizing over your situation by documenting it. this will help in two ways because writing down how you feel is cathartic, and documenting the waxing and waning of your symptoms can yield insight into avenues of control over your symptoms. 3 Don't think that your current state is fixed because it is probably not. Dysautonomias wax and wane over time. I am doing much better now (although it is hard to ever notice that one is doing better, because we tend to increase our work/stress load to match our capacity for work/stress so we are always pushing the envelope.) I really wanted to die at times when I was feeling bad because it was so hard to think about anything else other than how I couldn't think about anything.

Thanks. I am going to have the test on Friday, so I will let you know the results.

Does anyone know whether there are two different protocols for the ACTH stimulation test? I am getting conflicting information on the web. UCSF website says: You may need to limit activities and eat a high-carbohydrate diet 12-24 hours before the test. You may be asked to fast for 6 hours before the test. http://www.ucsfhealth.org/adult/adam/data/003696.html Some website called "MDAdvice.com" says: Activity--Limit your physical activity for 10 to 12 hours before the test. Diet--Don't eat any food or drink any liquid for at least 12 hours before the test. You may be put on a low-carbohydrate diet for 2 days before the test. Alcohol (ethanol, whiskey, wine or beer) can also affect test results. http://www.mdadvice.com/library/test/medtest289.html NIH.gov says "there is no preparation for this test." http://www.cc.nih.gov/ccc/patient_education/procdiag/acth.pdf Also: does florinef effect the test? Thanks.

I sympathize with you. It would be an unpleasant and frightening situation to have your muscles atrophy. Good luck finding a solution! One possibile cause of weak and atrophied legs: autonomic dysfunction makes it hard to initiate activity, so you use your legs less and they get weaker, this feedsback into making it harder to initiate activity, thus a negative feedback loop is born that leads to progressive deconditioning of the legs. But you can reverse this by using stationary bicycles and elliptical machines. Another possibility is neuromuscular disorders. Washington University has an interesting website with information about neuromuscular disorders if you are interested. There is a section where it lists disorders and discusses the different kinds of muscle weakness they cause. It even has some pictures of people with atrophied muscles. Try: http://neuromuscular.wustl.edu/maltbrain.html Speaking of weakness in the legs.... It's worst for me when I squat. I even have trouble getting up off the toliet sometimes. HOWEVER, I've been doing high volume, low intensity leg presses lately - 30 % of my maximum, 4 sets per session, each set to failure (aprox. 40 reps per set) - since I started doing this I've been having less trouble squating and getting up.

What have you read to become knowledgeable on hormone issues? I have a textbook "Greenspan's Guide to Clinical Endocrinology" and it doesn't tell me much at all about the HPA axis. I don't even understand why it's an axis.

How do you eat them? Any recipes or tips greatly appreciated. Refried Bean Bowl. Ingredients: 15-20 oz of canned refried beans (I prefer the Taco Bell brand because it does not have added lard) 1 teaspoon of tumeric 1 teaspoon of sage 1 teaspoon of rosemary (you may wish to exclude this) .5 - 1 tablespoon of coconut oil (to absorb the tumeric and make it more bioavailable) 1 teaspoon of hot sauce 1-4 corn tortillas (highly optional) Process: Coconut oil is solid at room temperature, so I usually put that into a bowl first, microwave it until it liquefies and then add the spices and stir the spices into the oil. You can also put the oil and spices on top of the beans to prevent spices from caking along the side of the bowl. Next add the refried beans, place corn tortillas on top of the beans to insulate them, then microwave for 2 minutes, then add hot sauce, then stir again and eat. The tortillas can be used to make soft tacos. This is what I eat 10-14 / 21 meals a week.

I eat a lot of canned refried beans. They are already loaded with sodium. When I say "a lot" I mean over 31 oz a day. what about increasing potassium chloride on your own? Anyone tried that? I take florinef, but I forgot to tell me GP that I'm supposed to take Klor-Con (sp?) with it. So, he didn't write a prescription for potassium chloride when he took over maanging my florinef. Instead of telling him I should be taking Klor-Con, I've been pouring NuSalt (potassium chloride plus some other things) on my beans. I also use a lot of soy sauce.

I had an EMG on my legs. It was not painful to any degree worth mentioning.