jangle

Well it is true I don't know how much the medicines/supplements might be doing, but the reason I feel it is exercise is because I've been on those for months and it wasn't until just recently as I've gradually increased my exercise intensity that I've noticed symptom reductions. So basically the symptom reductions correlate to the increased exercise.

Abby, TXPOTS told me she has reduced her exercise intensity since she's gotten better, but she still exercises regularly. I believe a maintenance routine will be required, but after you get used to exercising it basically just becomes a habit like brushing your teeth. Please ask your doctor if it is appropriate to exercise. Personally I walked for the time I was sick and in my own personal case all it did was prevent me from getting worse, but certainly didn't improve me. I believe you do have to go into a rigorous form of exercise, might not necessarily have to be jogging, but certainly jogging is the most tried and true method I can think of. Anaphylaxing, no I did not have a reactive/allergic component to my POTS. I doubt that would be responsive to exercise as that seems more immunologically mediated than cardiovascularly, but the cardiovascular component should respond to exercise. lemons, that was definitely my experience, pacing is definitely a little bit depressing when we don't see the progress as readily as we used to. Puppylove, the thing about swimming is that it's done in a recumbant state, whether that is challenging the body orthostatically enough I'm not sure. I was never much of a jogger myself, but your body does get used to it after proper pacing and adjustment. Jogging is a wonderful way to build your venuous return system as well as the larger cardiovascular system and I can't recommend it enough.

I do think Exercise can help, ask your doctor if it's appropriate for you.

I had a similar experience when I went off Florinef, only it took two days before it hit me. I think I was on a lower dose than you though.

Yours follows mine, my peak HR is about 185-190 depending on how fast I go. It also stays elevated for many hours afterwards. Honestly I think it's best to not use the HR as a measuring device of how well you're improving. My symptoms have improved steadily but my HR has only mildly changed and certainly doesn't reflect the degree of improvement. The HR will recover with time, but that is a much slower process I believe. The main objective is symptom reduction. The mind is willing to go exercise, but you do have to pace yourself and make sure you don't overdo it. Allow your body to regenerate and work different muscle groups so that you're not continuously shredding the same group everyday. Not that you were, I was just phrasing that sentence as an abstract statement to an abstract audience.

Has anyone tried squats? I did it today and obviously became very lightheaded during/after the trial. But this type of weight lifting seems to target the relevant muscles to standing since essentially it's just putting weight on the standing motion. Anyways just wondering if anyone has had success with this, I'm going to incorporate squats 3 times a week.

Well the only actual medication I'm on is the Losartan, and it hasn't been the miracle cure for me but it has reduced symptoms under stress and alleviated some of my lightheadedness. Basically what I'm saying is that if I went without it, it wouldn't be dramatically different so I was never dependent on it in the first place. As for the supplements, the vitamin D and Lipoic Acid have led to the main symptomatic reductions but nowhere near what exercise has done. I don't plan on reducing any of the medicines except of course for the turmeric.

I only recently added turmeric. To be honest I don't think it does anything. The bioavailability of Turmeric is so low that it can't even be detected at dosages less than 4 grams. I only take about 400 miligrams. I probably will stop that since it's expensive. I take 25 mg of Losartan. That drug has helped the symptoms and helped me under conditions of stress, however with my exercise my BP has gone from like 120/75 to like 105/60, I don't know if I really want to add anymore Losartan which might lower my BP too much.

I'm taking 600 mg of ALA/day. I also take it with a multi vitamin B. It definitely gives me an energy boost, but I haven't really found it's helped my lightheadedness/headaches. Exercise is what helped the most.

Alpha Lipoic Acid is a strong anti-oxidant and Dr. Stewart found that anionic species in endothelial cells can contribute to their dysfunction. He found that administering IV sodium ascorbate which is a more bioavailable form of Vitamin C boosted blood flow in low flow POTS. Since I don't have access to that type of antioxidant I went with the next best thing which is essentially alpha lipoic acid. ALA I believe has the strongest antioxidant activity you can buy over the counter.

I've been taking it for about 2 months.

There's no need to rush your exercise regiment. I'm relatively young and so my body conditions quite quickly. I think TXPOTS worked her way up to 5 miles of jogging over a period of months and then she went up to 8 miles after a few more months. For me I'm jogging the whole 50 minutes, but again I've been doing this now for about 2 months. 35 minutes is great, and if you have to walk that's alright to as long as you get back up to jogging. I found that doing interval training really boosts your endurance, i.e. sprinting for 30 sec - 1 minute followed by going back to normal paced jog, but again if your HR is already high from just jogging it's probably not advised to go into a sprint. I haven't started weight lifting yet and I know TXPOTS did a lot of weight lifting which probably helped her more than just jogging alone.

It's difficult to say exactly when my POTS "began", I've had minor symptoms most of my life. It first noticeably got bad about 6 years ago and stayed bad until now. I would recommend not to be discouraged if you don't get consistent results or any results in the initial time period. I believe people respond at different rates and it can definitely take longer than a few months to recover. I still don't consider myself recovered but I do know that I am A LOT better off than I was. Right now my symptoms are better described as inconveniences (sometimes I can describe it as just a slight sensation in my head) rather than major barriers although they can still fluctuate at times to being painful again. I will continue to advance my exercise regiment. TXPOTS is sort of my Obi Wan Kenobi and me as Luke Skywalker. She blazed the trail. Your daughter can be Princess Leia. Don't mind me.

Yes, my heart rate has been normalizing during my jogs. When I first started out it would go to around 200-210. Now it starts out at about 160 and it slowly goes up to about 180 as time goes on (after about 30 minutes), usually maxes at about 185 but only because I start run/sprinting. As for pushing myself I'm conditioned now so well that I don't feel that out of breath during my runs, in fact I feel way more energized. I should also note that the 94 HR number is after I'm standing still for a few minutes, my usual standing HR semi-moving around is actually around 82.

So I "began" following this exercise protocol at the beginning of February. http://hyper.ahajour...t/45/3/391.full Basically, 3x30 minutes of jogging for 4 weeks 3x40 minutes of jogging for 4 weeks 3x50 minutes of jogging for 4 weeks. Right now I'm in the 10th week of the protocol. I'm jogging ~6 miles in 50 minutes. I'm about to incorporate weight lifting. After about the 6th week I noticed my standing HR (after a few minutes) consistently dropped from 123 to about 105. Now my standing HR is about 94. (This is at 10 weeks) (Reference supine is about ~66) My symptom reductions seem to mirror the reductions cited in the study, although I will say that I noticed a lot of the improvement when I transitioned into the 50 minute jogging intervals. It seems that duration of exercise correlates to the reduction in symptoms at least in my case. I wouldn't be disheartened if you're not noticing symptom improvement with your own exercise regiment after three months. I talked with TXPOTS and she mentioned very gradual change in her symptoms over a 18 month period before she completely overcame her POTS. I believe the response time is highly individual. I stopped jogging outside and jog on the elliptical indoors and have been doing so for the past ~2 weeks or so and I find it about the same as jogging if you set the resistance beyond level 10. Medications + supplements I've been taking: Turmeric + Vitamin D + Losartan + Fish Oil + Alpha Lipoic Acid + Multi Vitamin B

Elegiamore, so sorry to hear about your state. Is there any potential for utilizing IV stem cells? It might be possible to repair your endothelium. I'm assuming that's what they mean is damaged when they refer to the lining of your arteries. When you say you had hyperpots for 31 years, was it even early on in your hyperpots that you would have high blood pressure from standing up? High blood pressure itself can damage the endothelium without the NE explanation. That said, it is true that POTS can be very severe and drastically impact one's health. One should not negate this fact, but it also shouldn't make us afraid to live our lives. We do need to take it easy and incorporate treatment plans to reduce our NE levels such as aerobic exercise etc. etc. Thank you for sharing your story.

Yes, I can honestly say exercise has improved me substantially. My main symptom was lightheadedness, my gastro issues resolved a few years ago by themselves. Basically what I did was I started jogging and I jogged as far as I could reasonably go. For the first day this ended up being about one minute. Then the next day I jogged at the same location and tried to beat that distance by as far as I could go. I basically repeated this process, always trying to increase the distance I was running. After a few weeks I got to a point where I could jog fairly far. Right now I'm about 9 weeks into my jogging program. I'm jogging close to 6 miles in 50 minutes. I'm trying to follow this study here:http://hyper.ahajournals.org/content/45/3/391.full?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=stroke&searchid=1&FIRSTINDEX=60&resourcetype=HWFIG Now if your daughter is passing out or having extreme difficulties I would definitely leave that to the discretion of the doctor on how to proceed. You could also look at the Levine protocol which was specifically designed for starting POTS patients off who're more incapacitated.

Just because you have normal blood pressure does not mean all your tissues are adequately perfused with circulation. An example would be Raynaud's phenomenon. Despite having normal blood pressure the hands and feet are not adequately perfused. Now why this happens might not be limited to just one reason. It could have to do with baroreceptor malfunctioning, NET deficiency, angiotensin ii blockade, and all kinds of things really.

Lemons if you are passing out obviously it's not advised to do too strenuous of exercises. Have you been able to get your calcitriol levels checked? Even if they are normal, there was a study I read that calcitriol improves endothelial functioning drastically such that it improves blood flow. Additionally do you think you could do exercise bikes? They might be a good tool to help you build up so you're not passing out.

I can tell you I thoroughly enjoyed moving out into an apartment with room mates. I don't think I would have enjoyed the dorms, but to each their own.

Runningwild there was a thread recently about a woman participating in an ironman that also mentioned she runs marathons.

Kjmom, it is true that the buoyant force of the water counteracts the force of gravity such that the net force pushing the blood down is much lower. Unfortunately no one knows explicitly what causes the gastrointestinal problems, however if you run a tilt table test on your daughter I'm pretty sure it will show that she has parasympathetic dysfunction as I did when I got diagnosed. The parasympathetic nervous system is in charge of digestion, so any type of abnormality there can disrupt the natural digestive process and cause gastrointestinal problems. However it is also possible that a type of hypoperfusion of blood is causing pain receptors to activate and that it can be explained purely by a cardiovascular argument. Or it could be a fusion of both arguments, that the nerves need a steady supply of blood to operate correctly, and with the hypoperfusion it's causing the nerve dysfunction which is causing the pain. Either way hopefully the florinef will work and take away the pain. I myself am getting into theoretical medicine here but please refer to my thread on calcitriol, as it might also hold a precious key to unlocking this illness. You could bring that case study to your doctor and have him/her read over it. I honestly believe POTS is a neuroendocrine disorder, that the autonomic dysfunction is caused by a low amount of ACE2 enzymes which causes an elevation of angiotensin ii to build up. ACE2 converts angiotensin ii to angiotensin (1-7). Now angiotensin (1-7) are vasodilators whereas angiotensin ii is a vasoconstrictor. An elevation of angiotensin ii could cause systemic venous and arterial constriction which inhibits blood flow back to the heart. Additionally, angiotensin ii is found in brain neurons located in the regions responsible for autonomic control and it also is a neurotransmitter to the parasympathetic nervous system. There are many potential roles in which angiotensin ii could play in the pathology of POTS. Dr. Stewart and Dr. Raj found that a portion of POTS patients have elevated angiotensin ii in their clinical research. Calcitriol blocks the effects of angiotensin ii as in the study you can read about in the thread I started. Additionally trials of Losartan are underway in POTS patients, in my own case Losartan has helped me. Wish you well. Your daughter has fallen ill young and that is very sad, that is such a tender age and one that should be warm and loving. However, take heart that the younger a person gets POTS the more chance they have to eventually improve in general.

Puppylove, the way I dealt with this throughout college is I took everything one week at a time. Like each semester your college courses pile so much work on you that it can get overwhelming. But the way to manage it is to know that everything you need to get done can get done in one week. So what you do is you look to the next week and see if you have any exams/papers to write. Always give yourself a week to study/work on the assignment and work everyday of the week towards that goal. Breakup your assignments, you shouldn't ever work too long for one period of time. Your mind learns better reading in increments than trying to do everything once. For instance, reading 5 30 minute increments is better than reading for 2.5 hours at once. Although I recall I read an entire semester of biology in 5 days. Read the chapters 16 hours a day. Ah the memories.

I found this study: http://eurheartj.oxfordjournals.org/content/early/2012/01/19/eurheartj.ehr459.abstract Which showed that calcitriol can also reduce angiotensin ii binding as well as reactive oxygen species in the circulatory system that reduces bioavailable NO. Also it has happened that at least one person was sent into remission following calcitriol supplementation. http://www.mindcull.com/data/the-endocrine-society/endo-2009-the-endocrine-society/1-alpha-hydroxylation-defect-in-postural-orthostatic-tachycardia-syndrome-type2-remission-with-calcitriol-supplementation/ So perhaps utilizing the vitamin D receptor as a renin-angiotensin-aldosterone regulator is also viable.

Lenna did your son have a dose dependent response?