jangle

Exercise (jogging + weights)

Massive amounts of liquids.

Coreg (A form of beta blocker)

I would say vigorous exercise thusfar has made the most improvement.

The Valsalva maneuver is a specific type of breathing exercise that induces a physiological response. Typically the way doctors perform it is by having you blow into a pressurized chamber usually around 40 mm Hg of pressure.

However, it can also be induced essentially whenever you're breathing out under physical pressure. Like when you're lifting weights, if you breathe out during the lift, you're putting your body under pressure and hence replicating the valsalva maneuver.

What happens is that the pressure (in your chest as you're exhaling) fights against the blood flow return to your heart, transiently lowering your stroke volume. This will of course cause or exacerbate POTS symptoms.

It's difficult to predict your response to exercise, even for people without POTS there is a wide range in how quickly your body can adapt to physical stress.

For me it takes about 1-1.5 months before I begin noticing results and at about 3 months where I was feeling my best.

Well on some level it is true, I mean there are tons of people who have really bad muscle tone and don't have POTS. The primary etiology will always be autonomic imbalance with POTS and if there was a treatment that directly targeted that, then it would make muscle tone less of a factor.

However, I think you might be misinterpreting what she is advising or maybe she's not giving you correct information. Muscle tone and fitness are very important to POTS as training these systems for the types of POTS that are responsive to exercise can go a long way to relieving the symptoms. Studies have shown that cardiovascular training as well as resistance training (weight lifting) can boost vagal tone which is very important when it comes to POTS. I.E. vigorous exercise itself balances the autonomic nervous system.

In addition, strengthening the skeletal muscle pump will assist blood flow back to the heart which will increase stroke volume. Additionally vigorous exercise will increase blood plasma levels which can reduce symptoms of POTS as well.

In other words, in my opinion, right now exercise is the most effective treatment for POTS as it targets many different variables relevant to POTS. Plasma volume, skeletal muscle pump, norepinephrine levels, angiotensin ii levels, vagal tone, and nitric oxide levels.

Lifting weights I exhale while lifting under pressure basically inducing a pseudo valsalva maneuver. Oh my goodness it sets my POTS off.

Feeling better again though! Lightheadedness reduced >50% throughout day. This is just with weight lifting, I'm going to start incorporating cardio again.

I wrote the author of the study and he basically told me that he was describing the deconditioning as a secondary cause to POTS, with the primary cause being one of potentially many different things.

So actually his view is the same as mine.

As a 15 year old teenage boy who may have POTS, I have wondered, why does POTS mysteriously go away? If everything goes according to plan, my POTS (if that's causing my symptoms) will gradually disappear until I am asymptomatic, apparently around my mid 20s.

Does this actually happen to teenagers who have POTS?

If yes, does anyone know what is going on in the body that produces this effect?

Well it's great that you got diagnosed early. I first start noticing my POTS symptoms when I was 17, I'm currently 23 and still have POTS. I have improved since when I first got it, I noticed my nausea/vomiting went away after a while. Mostly the lightheadedness/headaches/dizziness lingered. Exercise improves these symptoms for me.

To your question why does POTS go away. Well, first and foremost you have to understand that this is like looking into the ocean and trying to guess what is at the bottom.

It's a difficult question to answer because as it stands POTS isn't a singular thing, there appears to be different "flavors" of POTS. Hyperadrenergic pots, low flow pots, high flow pots, autoimmune pots, MCAD related pots, connective tissue disorder related POTS, heck there was a patient who had a big ole' inferior vena cava that presumably caused her POTS, not to mention deconditioning induced POTS. And probably many other types.

My own personal opinion is that underlying a lot of these cases is an autoimmune cause. There is a fairly long explanation as to why I think this and I would make this post way too long if I delved into it.

Basically, from the evidence presented to me, I feel that there are autoantibodies/cytokines that are disrupting the NET (norepinephrine transporter) from having adequate levels in POTS patients. It is conceivable that as one ages, changes naturally occur within the immune system that can lead to a mitigation/remission of POTS.

So I squated (bar on shoulders, go down and stand back up) 255 pounds or 115 kg a few times. By the third repetition I could feel my heart exploding in my chest and got really lightheaded. Afterwards feel better than when I went into the gym. My muscles aren't fatigued, but I have to stop due to lightheadedness - it seems to be working my cardiovascular system directly. Also incorporating HIIT cardio training to increase blood volume/cardio health.

More squat weight!!!

Sorry ya I had it done and my levels were actually high. I tried calcitriol but had to stop due to side effects. Probably because of the high levels.

I'm bringing Jangle's thread up again. If only I had paid more attention to it back in January. But, then again, I didn't have my 23andme genetic results, so wouldn't have seen a connection with me.

So, Jangle or Derekliz, did you have your 1,25 D levels checked? Were they normal or not?

Ya, but don't be discouraged, you might have a type of POTS that is responsive.

@Jangle,

I had no idea that positive Achr antibodies were associated with POTS. Mine have been elevated for years, but my neurologist and the testing they did on me do not show evidence of Mysathenia Gravis. I am wondering why my neurologist never told me they are associated with POTS? Is this a recent finding?

It's about 4-5 years old.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637993/

I already posted this a while ago. I don't know if there's something different from calcitriol and your 1,25 D3 levels, but I started supplementing D3 like mad and I got my 1,25 levels like way above normal, and I still had POTS. I began taking calcitriol with this high D3 level and I started getting stomach cramps so I worried about calcium levels and just stopped it.

I believe if calcitriol works it's working through modulating the immune system that's relevant to POTS and maybe that's why this particular patient had the success.

My dizziness gets multiplied by a factor of 2 and I get this wave of fatigue that justs makes me wanna lay the heck down.

For me my maximum heart rate is reached after about 3 minutes of standing still. Usually I won't get the tachycardia immediately, (although sometimes I do) but it gradually builds over time. The key is to stand still, if you flex your legs or muscles it will lower your HR.

Everyone is different though, but as a general rule you should take your HR probably after 5 minutes of standing still.

If your POTS is similar to mine ifreem02 then exercise will improve your lightheadedness. For me I found jogging to be the most effective intervention, but currently I'm on a bulk phase in weight lifting so I've stopped jogging.

I'm testing to see if lifting weights might be even more effective as it directly turns on the vagal nerves + works skeletal muscle pump.

It is true that a lot of CFS patients have POTS, however not all of them do so we can't say it is a purely spectrum phenomenon.

The recent study to come out showing that rituximab helped roughly 2/3 of CFS patients highly suggests some unknown autoantibody involved in that disease. I imagine there is some unknown antibody associated with POTS as well. One antibody - the ACHR autoantibodies have already been associated with POTS.

Unfortunately we have largely cardiologists studying POTS and they tend not to be well versed with the immune system. Realistically some field has got to take up the challenge, and it's probably either going to be rheumatology or neurology.

What's your heart rate standing up vs. lying down?

Apart from that a tilt table test is usually required to make/confirm a diagnosis of POTS.

That's odd, jangle, because I go to Dr. G and I wasn't given either of those (one was due to my hypertension with flares, but don't know which). We discussed beta blockers (all types), ssris, snris, xanax/lorazapam, and various other treatments. I was also given lots of suggestions for lifestyle/diet modifications (other than salts) and told what testing I should pursue when I went home to try and get my symptoms under better control. Maybe the office is only familiar with those two meds?

Well I substituted "salt and exercise" for what they said on the phone was "lifestyle modifications" I don't know what other lifestyle modifications they might be advocating.

Take what I say with a grain of salt because I did not go, but I called up Dr. Goodman's office to see what they do at Mayo Arizona. Basically said if Florinef or Midodrine didn't work they just recommend salt and exercise.

Well I'm not spending that much money to be told to do what I'm already doing.

Say I have an important interview scheduled at 2:30. But it's out of town so I have to get my IV Saline at 5:00 pm the day before, will I still have the effects of saline in me?

Basically does the IV saline last about a day or so?

I have noticed that more and more after eating anything or even drinking, I will get very lightheaded and end up having to go to bed cause I get so tired. My heart will beat irregulat too. I also have colonic inertia, severe constipation. Gastroparesis also. The back of head hurts including headaches. Face even goes numb at times after I eat or drink anything. It seems that when I have anything in my stomach my bp goes down. I also have hypoglycemia now. Starting to develop problems with my bladder not emptying very well. I am not bedridden but at times depend on a wheelchair cause of severe fatigue from low calorie intake and at times my legs give out on me. Have had many occasions where I will just go out after eating or drinking anything. I just become so weak,lightheaded and unable to walk.

I am so glad I will be going to Vanderbilt. My cardiologist,familydr.,urologist and motiltiy dr. all fill my autonomic system is failing. My family dr. mentioned shy-dragers.

It is all scary. I have been very sick now for 2 years. Down 70 pounds so far due to gastopraesis and colonic inerita. Feeding tubes have been mentioned a few times but I fighting as hard as I can to stay off them. Infections can be very serious with tubes. But if my life depended on it, I would do it.

Also, I have noticed my fibromyalgia has gotten much worse. Pain at times is worse than my abdominal pain.

Have you had ACHR-autoantibodies tested?

Welp, might as well try it

Yes I am able to exercise.

I had to start slowly, I did about 1 minute of jogging and worked up from there. I found that exercise improved me drastically, but did not prevent a relapse. I'm getting back into it and am beginning to feel better. I recommend doing whatever you can and starting an exercise plan under medical supervision.

As POTS is caused by a variety of different things, it's difficult to predict what response you will have, but it does seem to be the case that most people improve. However, it's also true that exercise can hurt some people, especially if they have underlying connective tissue disorders. So you could talk with your doctor before beginning a regimen to make sure you're in the clear.

I can understand how generally a low dose would be better, but I think it doesn't work for everyone. My daughter started out at a low dose, then was increased further and further until it helped her. At this point, she is at 120 mg ER, which I believe is a fairly high dose. But at a lower dose, she couldn't stand up for long or ride in a car at all without vomiting. Now she can.

That's interesting, I think 120 mg would put me flat on the floor.

http://circ.ahajournals.org/content/120/9/725.long

Came across this study which makes sense and certainly goes with my experience. Actually for me I felt better at 10 mg propranolol and began feeling bad at 20 mg.