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Issie good gosh I remember that ride before I had POTS. It was difficult even then! I'm surprised you didn't pass out.

Heart attack means one of the four coronary arteries (blood vessels that supply blood to the heart) becomes blocked so the heart tissue begins to die. This is usually due to atherosclerosis or hardening of the arteries caused by high cholesterol, inflammation, high blood pressure, or diabetes. Cardiac arrest is what happens when your heart goes into ventricular fibrillation. It flutters such that it isn't pumping blood anymore. Pots heart is a fast heart beat not related to ventricular fibrillation. The heart rate can go above 300 bpm and maintain blood supply but it gets dangerous there. Most pots patients are under 200 bpm

Just thought I should share this story with y'all, not that anyone is probably looking to going skydiving but just as a future warning I guess. Last year before I knew I had POTS I went skydiving as a tandem jump. Everything went well until the parachute pulled. When you're on the ground you have 1 g of acceleration on you =9.81 m/s^2. When the parachute pulls your body rapidly decelerates and you have an effective 3g - 4g of acceleration. I've not passed out with POTS on the ground before, but when that parachute pulled I could literally feel my blood pooling into my feet and my vision going out. I just barely hung on to consciousness, but I can imagine if someone were worse off and they were jumping alone, skydiving would be very dangerous. If you pass out in mid-air, even with your parachute pulled you need to be conscious to be able to control the chute safely to land. I would definitely not advise anyone to go skydiving, or if you do, make sure it's only tandem jumping and be prepared probably to pass out 5,000 feet up.

This kinda seems dangerous? Like maybe doctors should address this? I mean I guess POTS people have typical lifespans so maybe transient hypertension <1 hr doesn't dramatically raise cardiovascular risk? I mean in some ways analogous to weight lifters, that during maximal weight lifting their blood pressures go up to 360/300 mm Hg yet they don't seem to die due to cardiovascular events more than the general population. I don't know. My TTT said I had BP around 140 and that somewhat mimicked how I was feeling, but I had vasovagal stuff going on with my HR dropping by 50 bpm and my BP rising by 30 mm Hg for a few seconds.

My doctor didn't ever check my standing norepinephrine levels. I've tested my BP sitting and standing they're about the same +/- 5 mm Hg. But one thing that worries me is that over the past 6 years I've gone to thousands of classes. Each class I would get really hot, really lightheaded, really powerful panic attacks that would last hours. Now I read that things like MCAD and associated panic attacks like these might have high blood pressure. Well I never took my blood pressure during these events but it kind of worries me to think that I might have had years of hypertension that I didn't even know? So I was wondering if anyone has had some similar experience to me, where they get intense anxiety/lightheadedness associated with certain events - if you've ever taken your blood pressure. Thanks.

Interesting, never thought ACE would be high in POTS

Naomi I started out with being able to jog 1 minute. I progressed slowly over 4.5 weeks then I stopped for two months (just did walking etc.) and started back up again at the beginning of February. My fitness was about the same when I started again as when I stopped so I consider it a continuous 6 week endeavor. Puppylove, I believe that as long as you're getting gently out of breath you should continue with that exercise until you feel more comfortable. But to be honest with you I walked for the past 6 years that I had this (I would walk somewhere around 4 miles a day) and it didn't help my symptoms at all. In fact when I started jogging my symptoms didn't really change either. It's not until I got to this fitness that I'm noticing a change in my symptoms as well as heart rate. In my experience you don't want to overdo it, there's no need to rush and a lot of what helps is just being able to have the sense of control.

bananas, I'm not sure about jogging if you have EDS, if your joints are at risk I would suggest staying with your doctor's advice and doing safe exercises. I think when it all comes down to it, it's about making your body have a sustained but gentle heavy breathing that eventually forces your body to adapt physiologically. It could be achieved on a recumbant bike as well, just as long as you're pushing your heart rate up for extended periods of time. And yes, I have to say making the jump from 5 minutes to 10 minutes was probably the most difficult jump for me but you can do it! I'm beginning to think as you are as well - that there is a light at the end of the tunnel. As for me, I only check my HR exercising when I go on a treadmill. It's something ridiculous like 200-210, so I prefer to jog outside so I can't see it Also jogging in a forest is sooooo relaxing.

My body does seem to be responding to exercise, however the response only seems to happen once I hit the 3 mile (30+ minutes of jogging 10 min/mile pace) mark. Technically I started jogging last October, but I stopped in November and resumed in February with pretty much the same level of fitness I had before. So I'm just going to write here what my results thusfar have been and hopefully how others can benefit. I did about 4 weeks of jogging in October - November. This was before I knew I had POTS, and I didn't really improve much, but my fitness was not anywhere near what it is now and I wasn't running sufficiently enough I suppose. The state of my heart rates in December were 75 bpm supine 125 standing. Now I've done three weeks of rather vigorous exercise, my supine is about 75 still but my standing is 90. This lasts for about a day and the longer the period goes without jogging the higher my heart rate will creep up. Standing still for five minutes my heart rate will still climb to about 108, which is considerably less than the 125 it would go to after 5 minutes of standing. I'm still undergoing my exercise regiment so I still consider this a work in progress. ----------------------------- By no means is this scientific but here's what I've done. First, I don't think walking will help whatsoever, it does not stress the body enough in my observation. I did near daily walking all throughout having POTS and obviously it has had no impact on my symptom severity. When I first started jogging I could reasonably only jog for about 1 minute. I suspect most other people are about at that same level of fitness. But here's what you do: I think this could only be adopted if it's possible for you to stand. If you're passing out frequently from standing, perhaps the Levine program would work for you. What I did was established my baseline. "Ok I can jog for 1 minute" then the next day I jogged the 1 minute and I tried to go a little bit further, say 10 seconds longer. Then I would give my body a day break, your body will tell you if you need a break or not. But basically I repeated this process, I kept jogging a little bit further than the previous time's effort. Sometimes I was able to increase my jogging by a total of 20 seconds longer, but then I would have to stay at that level for a few days. I would recommend jogging outdoors as you get fresh air and the humidity tends to be lower and you can vary your pace easier. Jogging in a forested area is probably best. In my case my body began to adjust and I found I could lengthen my stride considerably more. I'm jogging at relatively the same pace (~10.5 min/mile) that I did when I started. I didn't want to go too fast as this would make my heart rate go way up. I believe by increasing the amount of time my body is under stress it can hormonally and cardiovascularly make the changes necessary and this can only be done I believe through extended time periods of aerobic exercise. So basically I am looking to increase the jogging time. Realistically speaking, the time it takes to get to about 30 minutes of continuous jogging for me was about 6 weeks. Once I hit 30 minutes of jogging I started spacing workouts to about once every other day, and I let my body walk on the "off" days. That way my leg muscles can regenerate and I can build up my skeletal muscle pump. Anyways I am feeling better and I expect to start jogging at a 40-50 minute pace in a few weeks. I just wanted to share my results for others that this can work and it can be of great assistance. Also I have been taking Alpha Lipoic Acid + Vitamin D + Orange Juice + Multi Vitamin B. These supplements might also assist you with energy + POTS symptoms.

Emma, regardless of having symptoms or not you should probably get a sleep study done as pots patients seem to have an increased risk of sleep apnea. The sleep studies are kind of fun too but I guess it depends on how talkative your tech is. Anyways waking up in the middle of the night especially with breath issues suggests you should see your doctor about it. Cpap is highly effective at treating sleep apnea and as others have stated is absolutely necessary to prevent damage to your body.

Well I don't know what to say, it's difficult to find anything consistent amongst the POTS patients. I don't think this completely discounts the idea of angiotensin ii being involved with POTS however it does emphasize what Dr. Stewart found which is that only a subset (the low flow pots) seem to have elevated angiotensin ii. Also it brings into question the possibility that it's the angiotensin ii receptors which are dysfunctional which would make treatment a lot more difficult (or maybe not).

Puppylove, a lot of distress can come with the uncertainty of this illness. However, one thing that I have surmised from reading many people's accounts as well as prognostic studies is that POTS does span a lot of symptoms. They can be very severe and overwhelming at times, but in the end you're going to be ok. Right now you're in a phase in your life where you're essentially navigating some dark waters and they're very scary. But know that the path has been walked by others and it is not so unknown. People can and do get to the other side ok and I have no doubt that you will eventually, it's just for this time you're going through some serious symptoms. But you're not in any danger whatsoever of dying, not from POTS or the symptoms you're experiencing. Sometimes it's best to just let the doubts flood through your mind when you're trying to go to sleep at night. Don't try to fight them, if you're afraid of dying or something going out of your control, just accept the thought, don't try to fight it - even though it's not true. The more you try to fight those kinds of thoughts the stronger they become. When you just say to yourself, "ok I guess I'm dying now" and let the thoughts flood your mind for a little while, you don't give them any power and eventually they go away. Anyways that seems to work for me.

Puppylove, as has been stated before it's pretty near impossible for them to empathize with you, but it does sound like they're sympathizing with you. But it's difficult to understand the extent of the pain associated with this illness if they don't have the perspective of feeling it. But also you have to realize that you can't live life in a bubble, and you are going to have to pull into the pain. It's not pleasant at all I know, but it's something we're going to have to do. The alternative is to not live life and that is not acceptable either. I'm trying really hard to figure out a way from this pain as I'm sure everyone is on these forums. Right now the best advice I can give you is to start your own exercise program. I don't want to tell you what to do with it because honestly some of the therapy is involved in you determining that for yourself. It gives you back some control over this thing and all I can tell you is that so far it is alleviating my symptoms and I believe it can for you as well. So maybe focus your energy into your own exercise program, motivate yourself to do a little more each day and know that cumulatively it all adds up and eventually will lead to you getting better.

could you just sleep with your back against a wall, i.e. having your bed against a wall and then sleeping at the far end of it. That might be more comfortable, but I don't know if it will work or not. Just a thought. Have you talked with your doctor about your CPAP issues, he/she might be able to find something that better accommodates you.

Lemons was your bradycardia during the time you were standing?

Just had an echo done at the beginning of this month before I started exercising. It came back normal.

Hopefully you start feeling better soon Lemons. You're in good hands now, hopefully they will find something, also be sure to ask for your renin-aldosterone-angiotensin system levels checked.

I wish I could tell you exactly what is going on and how to fix it. But I don't know where the nausea is coming from. I suspect the parasympathetic nervous system is involved due to its role in digestion. Now there really isn't a safe way to boost parasympathetic activity at this time. However exercise might be of assistance as can correcting any type of rein-aldosterone-angiotensin ii abnormalities. Unfortunately modern medicine hasn't yet developed a protocol for addressing the later of these two ideas.

Today I got 30 minutes of jogging (~3 miles). My body has acclimated to the point where I'm not getting tired at all jogging, I feel as if I'm walking now while I'm running. I don't really want to pick up the pace though because my heart rate is already absurd, I think I'll just try for 40-50 minutes next time.

I also inquired about the Levine protocol, but you're not allowed to talk about it. I haven't actually gotten the protocol yet, but to be honest I read the study with the military soldiers over in Europe and they got better with jogging. I don't think there's really any difference in the type of exercise, if you can jog you can do that. Recumbant bike should also work as well. Right now I'm jogging but I don't want to sound like that's the best way because I have no idea.

Ok I've been legitimately trying to increased my salt and water intake but within seconds of drinking more, it just goes right back out of me. Does everyone else have this problem?

Make sure there's still blood left in the tank after all that.

"accidently approved" meets "accidently sued" I like it. Glad you got it taken care of, now get better now ya hear

What worries me is that during my sleep study I only got 2.5 hours of sleep. But my doctor told me I don't have sleep apnea, but it's seeming like everyone who has POTS also has sleep apnea? But probably 2.5 hours is long enough to make a diagnosis.

Well it does seem that angiotensin ii has the same effect as atomoxetine as an NET inhibitor if I'm reading this correctly. This is a large volume of information for me to absorb I'll have to reread through it all. I've actually never touched base with what the NET is or what the theory of its association is with POTS.