plaster89

Same with me. My energy levels dipped significantly when on bisoprolol and the heart rate was really low as well. I struggled to walk for longer, something wasn't a very big problem earlier. I definitely feel much stronger though my heart rates never reach that high, it was maybe 120-130 when without medication. I haven't had any significant complications when on Ivabradine.

Yes, I am using a fingertip oximeter. I live at an altitude of just over 100 metres, so that shouldn't be a problem. If I start walking or doing some kind of exercise the saturation drops often below 90 with my heart rate jumping of course. I have 94 at best when resting, usually lower like 92 or 93. Thanks for good wishes.

Womble, I am currently taking Ivabradine so maybe that will help what I say. This medicine appear to be one of the few that actually make me better. My resting heart rate was pretty low even when not taking any drugs, like 60 bpm or sometimes under it. I was taking Bisoprolol first and it could have lowered it to 50 or even less, making me without energy. With Ivabradine, it hasn't dipped drastically but it is clearly lower overall. I feel really stronger with more energy. Of course it is still far from great but it's definitely better. For example, I feel really tired during first hours after waking up. First few days were difficult, I felt confused but then it was a nice improvement. Hope that helps.

Hi, I am back after some period of non-activity. I hope you are getting better and the things are going in the right direction. I have a question regarding oxygen saturation. I read the optimum values are 95 to 100. My levels are always lower than that, in the low 90s or close to that number. And that is at rest. I also really struggle with brain fog, lack of concentration and clearly thinking. It's get better then I have a lot of oxygen, like on fresh air. So I wonder if there can be a relation because those two things.

Acrocyanosis as it is known is not a normal physiologic reaction to standing. Every doctor to who I have been said it is a sign of autonomic dysfunction. It may not mean dysautonomia sometimes but it is not a physiologic reaction to standing.

There a few tests that could show potential dysautonomia. You can do them in your home. 1) Stand up for 3-5 minutes motionless with your hands down and then raise one of your hands up high for about 20-30 seconds. Compare the colour of the hands. If there is a significant difference that can suggest dysautonomia. 2) Lay down and check your blood pressure and heart rate after a few mins then do the same immediately after standing up and a few mins after. If your heart rate raises significantly (30+ bpm or close to this) and your BP remains stable that can suggest dysautonomia. Significant drop in BP is also not right. 3) Check your pupils whether they are dilated in normal lighting.

I think it is nothing extraordinary. Many of us are permanently in a fight-or-flight mode. I believe it is because our autonomic nervous system (ANS) do not constrict our blood vessels as it should. Therefore the body has to work hard to keep functioning, often releasing adrenaline or noradrenaline. That process can cause many kinds of "strange" symptoms. Many beta-blockers strongly block the catecholamines' effect. But I am not an expert, so can be mistaken.

I have the opposite problem. My values are pretty far apart. I just measured it and got 128 over 62 so the pulse pressure is 66 while the average is 40. I do not know why it happen but honestly I do not lay down much and despite symptoms try to keep myself busy with something and walk every day. I have this since many years.

I get what you are talking about. I would have been struggling with it for a couple of years but it suddenly and by a miracle improved when I started taking Bisoprolol.

I used to have a resting heart rate in low 60s but it jumped up and down during the day, barely any activity was giving me 100+ bpm. Now I am taking Bisoprolol and it is usually in the 70s all day long! I see a huge difference in concentration and my vision is so much better. However... I am so weak, much weaker than before, even walking is very challenging.

Hi, I understand your pain and have also skipped events because of dysautonomia. My cardiologist also said the strange colour of the hands is because of the blood not going where it should. And that's because we have problems. I understand you are anxious about them. There is nothing wrong about it, because the symptoms can be very unpleasant and sometimes even frightening. It might be difficult to do but I would personally suggest to focus a little bit less on how your pulse feel. I believe constant worrying about symptoms can only be bad. Dysautonomia is a life-limiting not life-threatening illness so the possibilities you mentioned in the last sentence are extremely unlikely to occur.

It is something called pulse pressure which is actually the difference between systolic and diastolic numbers. But your blood pressure seems to be low anyway, especially the systolic number. You can read more about it here -> https://en.wikipedia.org/wiki/Pulse_pressure

Excellent question! I am currently taking a beta-blocker named Bisoprolol. My heart rate has been stabilized but I have absolutely no energy and feel dizzy.

TVAM is apparently very successful but expensive. Michael Arata, a doctor who is doing this, have had only one complicated case while thousands were extremely successful. I know it is less than three years old. That's why it is impossible to judge the mortality and how it effects the patients in the future.

Hi, I have done a stand-up test (poor man's TTT) and I'm a little bit confused. After 15 minutes of laying down my heart rate was 65bpm and it jumped to 100bpm within seconds of standing up. However it then settled back to around 80 and instead my BP went by 20 points upwards. Is it normal POTS response? Or should I have persistent tachycardia?

Have you been to a doctor apart from that cardiologist's visit? It's very often that dysautonomia patients are dismissed and hear it's all in your head. Many symptoms overlap with anxiety so it's even harder to distinguish what is what. Mitral valve prolapse is not absolute indicator of having dysautonomia, although it's very much possible to have both. But since you have had it ruled out then you shouldn't worry about that. Dilated pupils are not common. Unless you are taking SSRI/SNRI-like drugs or have had some kind of neurological disorder it might be dysautonomia symptom. Red hands when standing are very common as well and it's a clear autonomic dysfunction. But the thing that baffles me is you have normal HR and BP and these symptoms you have had in teen years and they are back. It's very much possible you have some type of dysautonomia, it's pretty much impossible to get these symptoms from anxiety. But since your HR and BP are stable it can be something other than POTS.

Do you have dilated pupils or elevated body temperature?

Hi, For the beginning I would propose to simply lie down for 10-15 minutes at least and measure your blood pressure and heart rate two or three times. Make sure you aren't doing it after physical activitity or during major emotional stress. It can give a false verdict. You can do it in the morning for example. Then stand up from supine position and measure your pulse immediately. Notice a difference. If your heart rate will be 30+ bpm higher than it was when your were laying there is a very good possibility you have POTS. Stay motionless and not do lean on anything for about five mnutes and measure again and repeat it after another 5 minutes. Stop when you feel bad. Even if you do not achieve 30 beats increase that's not excluding pots. The bigger difference the better possibility of you having POTS. Blood pressure has nothing to do with POTS really. It is orthostatic hypotension, which is different type from POTS, that characterise in decrease in blood pressure when standing.

Praxxtor, I shortened the test because body was shaking more and more and knew that effects the reading so probably yes. Now I woke up and am yet to get of out bed and have normal body temp and normal pupils, it will surely change shortly after standing. Normal story for me. Didnt mentioned that before but elevated body temp (mid 37s) is normal in pots? Sorry if I am asking too much questions I am actually just shy of 20 when that threshold is 30 for pots

On the site from which I learned about this illness there was a story about beautiful Italian girl who became ill after Gardasil. I had no heard about that vaccine before but there were other stories all including girls. Only later on I learned that it is only-girl vaccine so logically there were no male stories there Don't know about two other teen males though. I did that test proposed by Praxxtor after waking up and my heart reached 95bpm after five or so minutes. Normally my resting HR is in high 50s. The blood pressure stayed stable, actually even increased a bit and had goosebumps immediately after concluding that test. Tried not to move but a did a little, the body was shaking all the time. Also discovered much faster heart rate (well over 100) during deep breathing. Thanks very much for replies. It looks more clear now. Also happy to understand that cold weather preference.

I am currently awaiting for a doctor's appointment about POTS/dysautonomia. I surfed on the net trying to gain informations but there is a lot of confusing things. I'm complaining of lightheadedness, headaches, blurry vision, nauseous and fatigued especially in the morning, severe polydipsia, hair lost, anhidrosis, dry skin, dilated pupils, sometimes anxious, heat intolerance. I know it's a long list but wanted to be precise. I never measured HR and blood pressure despite occasional palpitations. I'm suffering since developming autoimmune disease in May 2009 and the symptoms are slowly but gradually worsening, I am feeling really bad since mid-2013, not able to do much. My resting HR is in high 50s, standing for some time reaches 90. Don't know if I made that test correctly. And I have some questions: 1) Why the heart speeds up while standing and I started to feel dizzy and has blurry vision and cold hands? Low blood flow? 2) Is it possible to do some tests at home? 3) Why am I feeling worse in the mornings? 4) I prefer colder temperatures, in warmer weather I overheat so easily and then must recover for many hours if not days. Is it normal in dysautonomia? 5) Can dysautonomia be an explanation for elevated adrenal hormones, hair loss, cold hands, anhidrosis, morning nauseous, often headaches, lymphocytosis and blurry vision? For it all? 6) I'm male in late teens but from I heard POTS/dysautonomia is usually female disease, so as a male can I have it?