yogini

jjh, you are so right. I know someone who is a cardiologist, who told me they are constantly dealing with life and death matters, so anything that isn't life threatening does not seem so important. I think that the holter monitor test is for arrythmias, so any regular sinus heartbeat, regardless of how fast or slow it is, may still be considered normal. I think these drs brush us off, forgetting that it may be painful to function if the HR is so high or low, or that we might benefit from investigation or treatment.

Funny, I have food poisoning or some kind of stomach virus myself, though I haven't eaten the crackers or any kind of peanut butter. Things were really bad on Sat, but I have been slowly improving since then. Now I'm holding things down, but I haven't been in the mood to eat or drink much, but trying to force myself. Sitting up some, but mostly sleeping or in bed. Hopefully with some rest and rehydration, we will all be feeling better. Get well soon!

Hi, I don't know much about ablations, but I don't think hyperandrenergic POTS is treated much differently than other types of POTS...

Hi Pers, I've been doing yoga several times a week for a little bit more than a year. It's helped tremendously with my POTS symptoms, as well as with my fitness and energy level. I'm even up to doing handstands now, which I was never able to do, even when healthy. I don't have EDS, though. Like Nina, I worked with a personal trainer for a couple of years after getting POTS and did other forms of exercise regularly before I worked my way up to yoga. I do think there are a lot of yoga poses that almost anyone with POTS should be able to do, but most of those would be sitting or lying down. Yoga isn't for everyone, but if you are interested, I think it helps to have an experienced teacher. At my yoga school, they ask at the begining of each class whether anyone has any injuries or health conditions. The teachers also tell you that you can skip any poses that aren't right for you, and work with you to come up with alternatives. There are also different varieties of yoga, some of which are more strenuous than others. I read up and asked around a little bit before I found the right place for me.

This always happens to me too, because my hands are colder than the rest of my body...

Did you walk with a flotation belt? All of the exercises I did with the trainer were with a flotation belt - it makes things much easier!

Have you considered working with a therapist and/or career counselor? I've used both and found it really helpful to have someone to talk things through, who is independent and devoted solely to helping me figure things out. It is even better than friends and family who DO understand! You might even be able to get free career counseling through your local community college.

I'm a big fan of yoga. I've been practicing for 1 1/2 years now and it has made a huge difference. One of the first forms of exercises that helped me was stretching. When I started yoga, I realized that my stretch DVD was actually yoga. Stretching really helped my strength and circulation and helped me work my way to exercising harder. There are lots of non-strenuous yoga poses that I think would be great for a POTSie starting out with exercise. Other things that helped me were doing pilates on a DVD and working with a personal trainer in the pool, who was trained as a rehab therapist for cardiac patients.

Interesting. I respect Dr. Stewart. I remember reading one of the articles about elevating the head of the bed, and the theory is that while you sleep, tilting the head causes the blood to floow to your feet, and your body creates more blood volume to get blood to your brain. Raising the foot of the bed does the opposite - increases blood flow to the brain and so I didn't think it would stimulate blood volume. My non-medical theory, but who knows. Keeping my bed flat for now!

The Dinet treatment page says raising the head of the bed increases blood volume: Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000).

I'd love to see the articles if anyone has them. I think it's ok to raise your feet for an hr or so, but I'd be afraid to sleep and have blood going to my head all night. It could cause a headache or even a stroke...

I think the only way to avoid artificial sweeteners is to read labels on things. I just realized recently that some things aren't even labeled. I bought Royal brand gelatin instead of Jello, b/c it was on sale, and it had that funny aftertaste. When I read the ingredients, they included aspartame and wasn't even labeled on the front. I don't mind a little artificial sweetener sometimes, but on a day-to-day basis I think I'd rather have real sugar. Then there is the whole issue of high fructose corn syrup, which is a thread in and of itself!

There was a thread recently (which I can't seem to find!) about whether or not tilting the head of the bed upward is helpful for POTS. I think someone mentioned that recent articles said that it only helped some POTS patients? My bed has been raised for more than 4 years, but I was away for a couple of months months where I couldn't tilt my bed. I felt better when away and I actually couldn't sleep for a month after getting home. So I'm thinking that tilting the bed may not be the best thing for me! My bed is now flat again, so we'll see if that makes a difference. I'm wondering whether anyone felt better after lowering back down the head of their bed? Would love to see any articles that mention this. Thanks!

I think their biling office can work out a payment plan with you - or maybe you would qualify for one of their grants. Good luck!

I was thinking the same thing as Ernie. The BB seems like it might address your symptoms better than the Mestinon. And it should settle in your system within a week or two, so you could always start the Mestinon after that.

Have you tried beta blockers to control your HR?

Florinef increases both blood volume and BP. If you're taking florinef and your BP is that high, you may need to be on a lesser dose. A lot of us get high BP after being on florinef, so there is a good chance it is related. Check in with your doc or pharmacist.

Are you trying Cymbalta for POTS or for pain? I think some people here take it for pain, but SSRIs (not SNRIs) are shown to help POTS. I think other good things to try are beta blockers and florinef.

I think we're only human and it's OK to not follow the "rules of POTS" sometimes . Besides, I think alcohol is supposed to be "avoided", but isn't really a strict no-no for us. I think a lot of people have a drink or two sometimes. I stopped drinking after getting POTS, except for special occasions. When I know I'm going to be having a drink, I try to load up on extra salt and fluids the day before. Half of the time, I have hardly any problem. Other times, I do feel sick for the next day. At this point, I think it's more of a hangover than a POTS flare up, because I've lost my tolerance. I only wish I felt better after a glass, so I could do it more often!

I don't know too much about the blood sugar issue, but I wonder if your numbers weren't far enough away from the "normal zone" for the doctor to be concerned. Another thing that you may want to look into is reactive hypoglycemia, which isn't unusual for people with POTS. I didn't read your post about brain zaps, but I have them. I got them a couple of times right when I started Paxil (SSRI), and have had them once or twice since even though I haven't done anything with my dose. I never looked into it, b/c I feel OK otherwise. I just assumed they were a side effect of Paxil since I never had them before.

Hi, I know at first this condition is kind of confusing and scary. This forum is a great place to get info. I agree with the others the difference between NCS and POTS isn't so important. I just wanted to add that a "healthy" person's HR would increase about 15 points from sitting to standing. POTS is in increase in 30 bpm or more. Also, a normal resting heart rate is anywhere from 60-100pbm. So the numbers your daughter has are pretty good as far as dysautonomia goes...though they may vary if you measure them at other times. -Rita

Hi, welcome, I think Procrit increases blood volume. There may be others - the Dinet main pages list different treatments. But I agree with the others, an appointment with a top POTS specialist is probably a good idea. Also, use herbs with caution, they could've caused her allergic reactions or interacted with the other meds she's taking.

I tried it last year and didn't like the taste or the artificial sweetners. But it's great to know that more and more electrolyte drinks are being developed. Someday hopefully someone will come up with something that is all natural, has little or no sugar and tastes good!

This is an interesting topic. I have a pretty moderate form of POTS - no allergies or other conditions going on, but for some reason I had a lot of problems reducing florinef. My doctors always told me to taper over a week, but that never worked. Since then I've gone slowly when changing any med doses, but florinef is really the one that was hard to adjust. A few others have posted about this over the years, so you may want to search and read older posts. Jenwic, you mentioned that you start to feel sick if you are late taking your florinef, which seems unusual. I think florinef stays in your system for a long time - up to a couple of weeks, so missing a dose or taking it late shouldn't have too much of an effect...so maybe that part relates to another condition or allergies.

What dose are you taking? I was up to .2 at one point. I felt sick every time I tried to stop it. My doc told me to go from 2 pills to 1 pill then to 1/2 and stop. That didn't work for me, so I finally came up with something onmy own. I reduced by 1/4 pill every 3-4 weeks. That was slow enough so that my body didn't have a reaction and I was able to get off. Sometimes with POTS you just need to go a lot slower than the average person in stopping/staring meds. This isn't anything that a doctor will tell you, but I learned it here on the forum. It took a few months to go off, but it worked with hardly any side effects. Check with your doctor first - my docs have looked at me like I'm crazy, but have never said no to my going slower.