yogini

For most people with dysautomia, if you feel sick after exercising or your symptoms are more severe, you're exercising too hard. I worked myself up to being able to workout for 45 minutes on the bike or the elliptical trainer. I could not afford to feel sick, because I was working. I had to increase in 1, 2 or 5 minute intervals per week. IF you increase and start to feel sick, then you know you need to back off. Before I even got to the gym, I spent a few months walking and doing floor based exercises like pilates on a DVD. Even with those exercises, I started at a few minutes and then increased. Going slowly requires a lot of patience - it's not exactly sexy, but it does get you there - if your body is meant to go there. To the extent you are able to exercise, it will improve your stamina and your symptoms.

I get this sometimes as well. It isn't dangerous by itself, but it sounds like your exercise aggravated your symptoms. I would start off much more slowly - like walking or doing something seated or lying down. Pilates is good -- you can also read through old posts on exercise.

I have on tivo, so I can watch it over again a few times! I wrote Oprah once a long time ago to do a show on chronic illness. I think some others on here have too. It's great that you wrote her though. Hopefully she'll get a lot of responses from people with POTS and other illnesses and continue the topic. Now that she has Dr Oz, I think she's more into doing medical stories!

Did anyone catch today's Oprah? It has Montel Williams talking about life with MS. Even though he is talking about MS, I think what he says applies to POTS. He talks about how diffiicult his day to day life is, looking "normal", the unpredictability and how he came to terms with his diagnosis. Not particularly a fan of Montel, but I saw him on another show last Xmas and I really liked what he had to say. Now he has written a book about his experience, which I want to read. I've been watching Oprah for as long as she's been on, and don't remember a show on chronic illness. I think it's great that she is addressing the topic. Maybe people will get a better idea of what we go through. For those of you that missed it this afternoon, Oprah re-airs in the middle of the night (at least here).

Carinara, Are you able to get counseling for yourself? Maybe a counselor can help you work though issues about your illness and your boyfriend. A professional can help you not only with your decision, but also working through any reason/pattern that you may have for being in abusive relationships. I hope everything works out for the best. Hang in there.

I don't have sinusitis, but a low dose of midodrine made my nose run...so I think you're right.

It may be that the dose of BBs is too high - I was on 1/2 pill of atenolol, then 1/4 then 1/8 for a while. But, since none of the BBs she tried have seemed to work, maybe it makes sense to try the many other meds out there.

I wouldn't be scared of a dr who prescribes 0.2 mg florinef. I think a lot of our knowledge comes from personal expereience and reading here on the forum, and I am not sure even the top doctors would know about going slowly with doses. Rather, I would ask the doctor if he would be OK with titrating up slowly, say 1/2 pill every three weeks. My doctors aren't POTS experts, but they haven't minded when I suggested starting at a lower or fractional dose. If you have some doubts about florinef, you could also ask about trying midodrine first.

Even though he can do some fun things with your daughter that you might not be able to, she is probably affected by his moods as much as you are. You're in the best position to decide whether to stay, but I agree that saving up is a good idea. Also, buying an apartment with him would make it much harder to break up, so maybe that isn't a good idea. Your family may be more willing to help than you think - could you move in with them or move near them so that they can help care for your daughter? If not, there are organizations that can give you advice, even a place to live if you decide to leave.

You make some very good points. I noticed that too in the other thread - I thought it was a typo and maybe he meant 0.1 instead of 1? One pill of florinef is 0.1 mg. I've heard of people taking 0.4 in extreme cases, but the base dose is 0.1. 1mg would be 10 pills per day! It may be worth getting a second opinion b/c you're right that too much florinef can be very dangerous. Also, florinef takes a couple of weeks for the full effect to hit your system and the same amount of time for it to leave your system, so it's important to go slowly with changing doses. I had to wean 1/4 pill/month, otherwise my system went haywire. IMHO, it's much easier to find the right dose of midodrine than florinef. If you take too much, it's out of your system in 4 hrs, so no harm done...

It sounds like your HR was increasing throughout the day. Maybe your meds were wearing off, or maybe you overdid it, or both. The diarrhea is probably from your ANS acting up. It's good to monitor yourself, to see how your body is reacting. 153 sitting down is a pretty high heart rate.You may want to increase your activities more slowly, to give your body a chance to adjust.

I think there is a really strong chance that the breakdown is related to the med change. Any change in SSRIs can take even up to a couple of months to get adjusted to. But I'm very glad that your daughter is getting admitted and hope that will help get you some answers.

I have a sensitive stomach. The only thing that works for me is drinking broth. I buy organic boullion or organic soup base, the kind w/o MSG.

I stopped my trial after about 10 days because the turmeric made me tachy - not every day, but on several days. I didn't see any improvement in energy. I may think about trying it again at a better time, but not sure.

I think it's also used for Parkinson's, because I remember reading about it when I did work for a biotech company developing a Parkinson's treatment. I think any potential new treatment for POTS is a great thing! Thanks for the post.

I like the idea of the kinesiotape. I looked it up online and it seems cheap enough. Think I will give it a try. As for physcal therapy, I think it's probably not a cure, but can help with symptoms. It is great to have a professional person guide you into increasing your movement and activity, esp if it's covered by insurance!

I have the very vivid dreams, and I notice they happen on nights when my HR is higher. I think that is related to POTS. I sometimes wake up from these dreams in the middle of the night and take a small dose of beta blocker, which helps to calm things down. I also have the thing where I am about to fall asleep then I am jolted awake. I'm not sure whether that's a POTS thing. The last thing, when you feel like you're awake but you can't move is called sleep paralysis. I think it happens even to healthy people sometimes, and not sure it's POTS thing.

That much pain doesn't sound typical of just POTS. Have looked into other conditions that sometimes go along with POTS? Maybe she has EDS on top of POTS. Or even Lyme disease, if she rode horses. You may want to read thru old posts on these topics...

Firewatcher, you said it well. Any substance can be very dangerous. If one person can tolerate it, even in high doses, it doesn't mean another can. Also, if one person can tolerate it in high doses now, it doesn't mean that it won't cause him/her problems down the road. Forget about supplements, this is true even with FDA-approved drugs that have been used for years. For example, birth control pills cause increased risk for blood clots. My doc told me this only happens in 1 in 10,000 cases, but it is a scary side effect that is important to know about. I don't think empirical evidence is always enough, b/c if you knew the 9,999 other people taking BCPs, you might think there were no side effects. Even for drugs that have been approved and thought to be "safe", we find out about side effects down the road. I remember the fiascos with Vioxx and Seldane, among others,...I took Seldane back in the day! Not meant to encourage or discourage anyone, but these are the things that run through my head when I consider trying supplements. This is why I mostly feel comfortable using drugs that have not only been FDA approved, but have been on the market for ages. I think supplements can be helpful, and hope that they are able to standardize and test some of these supplements soon.

Futurehope, thanks for mentioning this. I'm somewhere in the middle. I think turmeric might be helpful. I am optimistic, but realistic, about it and will continue my trial. I think 500 is the standard dose available, so I feel OK with that. To the extent rates for certain illnesses are less in India than the US, it would be hard to attribute that to tumeric because they have a completely different lifestyle. And any benefit probably really depends upon the person and the underlying issues in our bodies, which doctors don't know enough about yet.

I know you're going through a tough time right now, but I believe most kids who develop POTS in their teens outgrow it by the time they are adults. That is something to look forward to. I don't have nausea, but I know there are tons of people here who do and probably have great treatment suggestions for you. I do agree that cutting out gluten and dairy has been a big help for people. As for meds, sometimes meds you can't tolerate alone work well in combinatin with one another (beta blockers combined with midodrine). Your daughter may benefit frm seeing one of the top POTS specialists, such as Mayo or Dr. Grubb, who know more about this. Also, I think there is a forum for kids which may be helpful to you.

POTS is a neurological disorder. It doesn't mean that you are deconditioned and not everyone with POTS is. If your condition is severe enough to limit your activity for a long time, you can get deconditioned. No matter what, many of us feel better, see an improvement in our symptoms and get more energy if we exercise. I agree with Firewatcher that you shouuld just exercise as much you feel comfortable doing and don't push too hard. And ups and downs in symptoms make no sense at all. They can be caused by anything or nothing!

I wouldn't get discouraged. I think a lot of people are sensitive to meds and have to try a few before finding something that works. It's a pain, but when you finally find the right med, it is worth it. You can read the Dinet main page for more info. I do agree that baby doses of meds have worked for me. I tried florinef and midodrine both in the past and they worked ok, with some side effects. However, for the past 9 months, I've been on Paxil and it has helped a lot with keeping up my BP.

Good question. Today is my third day on Turmeric. Yesterday, I had a bad headache, but it's also PMS time for me, so not sure what caused the headache. Other than that, I haven't noticed any difference on 500 mg. Would love to hear about anyone else's progress.

I just took my first pill. I was near a great natural pharmacy yesterday and decided to stop in. They suggested the Nature's Way brand, 500 mg. I was expecting a capsule, but when I opened it, it was a tablet. Can't wait to see what happens. It's cool that many of us are trying it together!