jangle

Well this morning I wouldn't be able to be diagnosed with POTS. My supine HR was 75, my standing HR was 80. I felt only a slight signal of lightheadedness. Unfortunately now my HR is back up in the high 90s low 100s this afternoon. I definitely seem to be oscillating. Better at nights and mornings, worse in daytime. Still please be cautious with exercise.

Oh btw, who could forget "walking on sunshine"

Thanks lemons, I agree that spending too much time on these forums might be counter productive not that the people are bad on here but just that we need to start focusing on other aspects of our lives and not let POTS take center stage (As difficult as that is). Exercise has been helping me out a lot and I know it will help you as well. Interesting insights on the water intake, but I have to ask what do you mean by 1/3 supplemented with electrolytes? Does that mean salt or were you talking about potassium? Anyways, even though there isn't a lot of research about Vitamin D and things like the RAAS, I think it's been helping me at 2,000 IU a day. I was considering sun tanning, but I think the risk of skin cancer or what not might put a damper on that so I've been trying supplements.

Kalamazoo, first listen to this: (Don't actually watch the video, that's boring.) Yes, I have many pointers to give. Firstly, the scenery is absolutely important. That's very much up to personal taste but for me pine forests are the best place to exercise. I FRIGGIN LOVE PINE TREES OMGAD. Like seriously The smell, the height, the sheer force of those behemoths. It's ASTONISHING!!!! But anyways, I guess it depends on what you like. If you like forests scenes, go for a forest. If you like mountains, go for mountains, if you like gyms go to gyms. Just go wherever you like. It's as much about mental tranquility as it is about physical endurance. Next select music you like. As for the actual exercise itself, make sure you're approved by your doctor before beginning any exercise regiment. Then start out slow. See how long you can jog until you get winded. That will be your baseline. The next day or next time your body is capable of jogging try to jog a little bit further than the previous day. Repeat this process by going at your own pace but working towards a goal of increasing your running time. I haven't really increased the speed of my pace, I've just been going for distance.

I don't know, but at the time I was ecstatic, there was a time where I went nearly a week without eating anything and my body started burning up so I figured I was either going to quit school or keep food down and thankfully the apples saved the day!

Naomi my lightheadedness has been oscillating. Before it was always constant but now im getting periods of time of immense reduction. Right now I feel 90% of my lightheadedness is gone. Now how long that will last I don't know. Also my vasovagal/ anxiety attacks seem to not be as frequent. Im still a work in progress but im definitely noticing an improvement.

First and foremost I want to say that since I joined this website I have discovered a whole new world of POTS. Technically Jenglynn, Corina, and I share the same diagnosis of POTS, but even at my worst I never had the same struggles as Corina or Jenglynn. I have never passed out and never been limited in walking etc. I don't think it is kind for us to charge that exercise can cure all and I certainly don't make that statement. I do believe that for people with similar conditions as mine that exercise can improve them. But we're all struggling with this thing that no one knows what causes, what happens etc. etc. so we have to be sensitive to the idea that what works for us might not and in fact might be dangerous for another. I can't even imagine having POTS with the intensity that Corina and Jenglynn have had to endure. My miniscule POTS in comparison has been enough to severely drain me of vitality, to have to go through the extended pain is not something I think I could withstand. I'm very happy that Octeotride has helped you Corina, and I hope that perhaps we can work together and find other therapeutic options that can carry the baton a little further in the way of alleviating POTS.

Haha nice bananas I just got done posting in another thread about using music while jogging. Superbeast - Rob Zombie The Touch - Stan Bush Up! - Shaina Twain We Are Young - Fun And for some reason 99 Luftballoons - Nena I guess that's my ancestral German for ya. I really don't know why that song does it for me. Maybe it's the POTS.

Yes Naomi and admittedly progress was slowest in the first few weeks. I ran in a forested area so I marked my progress by trees. "Ok, let me see if I can jog to that next one" etc. etc. Jogging can get very boring, that's why I suggest selecting your scenery and/or music wisely.

Potsgirl have you been able to eat? Well, it's good that the nurse is sticking up for you. Again I wish I could say something from experience that might help you, but I really don't have anything. Except I will say that eating apples was for some reason easy for me to hold down - moreso than other foods. As for the esophageal dysmotility, make sure your parents or family knows the heimlich maneuver just in case. Sorry you have to suffer through this, it's certainly not a common ordeal for people so I can see how that's isolating. But know that there will come a time when you'll look back at this, this won't be something you'll have to suffer from for the rest of your life.

Leigh im really glad to hear you've had good success with exercise. In relation to negativity I don't really know anyone on this forum who just wallows, but I can certainly understand being in pain brings out the negativity sometimes. And that's alright that's ok we all need to vent this stuff out sometimes and share the bad with the good. This condition is awful no doubt and sometimes it gets the best of us.

The standing folk are cruel to us.

Blue when I get these transient episodes of vertigo I'll perform an epley maneuver on myself and that usually quells the dizziness. Here is a good website on how to perform the epley maneuver. http://www.dizziness.../bppv/bppv.html BTW: Going to the bathroom when you have vertigo is ever so entertaining when you're a man.

dizzyallie it sounds like the vertigo you're describing is coming from a dysfunctional vestibular nerve. Have your doctors suggested vestibular rehabilitation therapy? (VRT) Doing some gaze stabilization exercises as well as balance retraining might help your vertigo however it won't do anything for your lightheadedness. I too have been lightheaded for a long time, I'm finding aerobic exercise to help me with this. Long periods of jogging (>30 minutes) seems to increase my blood volume, increase my parasympathetic nervous system, decrease my heart rate, and increase my heart's stroke volume. But definitely start at your own pace it took me a while to get to >30 minutes of jogging. I would suggest you talk with your doctor about starting an aerobic exercise + vestibular rehabilitation program.

Lexcyn, I'm not sure I would definitely talk to your doctors about that issue. I wish I could give you good advice but there could be a variety of things going on, I think that's best left with your doctors.

allie, lightheadedness/dizziness can occur sitting and lying down with POTS. It's simply not true that symptoms only occur during a standing position only. However, typically the symptoms are made worse when standing but that's not to suggest their absence otherwise.

Jangle, You just need a new doctor. Go shopping for one. They should be happy to obligue your request. They make money on it, for crying out loud. Issie You're right, I've been sounding so whiney lately about my doctors. I have dropped my old doctor and been looking for a new one, they're just so hard to find I found a REALLY great one, unfortunately she's not in the field that's relevant to POTS. It always seems like the female doctors are the most caring.

I wonder how these people get these proactive doctors who do these CT angiograms or what not. I have to debate with my doctor about asking for blood work. If a reasonable percentage of POTS patients have structural abnormalities to their venous systems, that kinda seems like a big deal or something that should be pursued.

Yes I hope you see a lot of improvement dizzy. Things I found that make exercise more enjoyable is making your own routines, picking an outdoor scenery you enjoy, doing your own exercises, and of course going at your own pace. I wish you well!

I've read that article before, it honestly scared me a lot, but the article mentioned he was able to improve. Honestly I wonder if he had other things going on, they tested him for lyme disease but that's notorious for giving false negatives. He might have had an autoimmune disorder as well. I wonder if there has been any follow up with him, if he's doing ok now or what's going on.

Sue, I don't know about you, but before I had POTS I had difficulty remembering what I did the previous week. Unless it's something important to you (maybe it was for your daughter) your brain isn't going to store it in your memory bank. Because you were able to remember other things about the previous week suggests ok memory. Like my parents can't remember where we ate out a few days previous unless it was somewhere big. I'm not saying there isn't cognitive deficits though it's just I don't think it's unreasonable not to remember something a week ago.

Julie, aprepitant is an SP antagonist that received approval from the FDA.

Yes I did, and others have as well. I think it's a common presentation with POTS. I think you would have to go to an open minded doctor to get them to prescribe you aprepitant for POTS. It might be a little easier if you still are having nausea and vomiting with your POTS. (Or tell them you do hehe) One thing is for sure, waiting for a researcher + FDA approval for POTS would be waiting to 2020 at the minimum. EDIT: Julie that's interesting that they have opposing effects on each other. That would seem to suggest that perhaps an alternative to octeotride would be to block the substance P which would have (effectively) the same effect as raising somatostatin levels.

The NK1 receptors and substance P are involved in every major region and hormone involved with POTS. Perhaps POTS patients have some type of altered NK1 receptor or perhaps an overexcretion of substance P? Somatostatin I recall works on G-coupled receptors which is what NK1 receptors are. Perhaps Somatostatin has competitive inhibition of these receptors (competing with substance P) which is providing the therapeutic effect.

I suspect it would show up on an echo but maybe not. Could possibly involve endoscopy. EDIT: I read the first page of the study on another site It was detected by ct angiography of the abdomen. Not echo.