yogini

I think electrolyte water (smartwater) only has trace amounts of minerals, so for most people it should not interact with florinef one way or the other. Most literature says to continue to salt load, even when on florinef. If you get bloated/high BP, it is better to cut back on florinef than salt intake.

So sorry you are dealing with all of this. Glad she is going to a better doctor/hospital next time. You have to be extra vigilant when you add new meds. Side effects are so crazy. On the pacer usually they are given when a person has both low BP and low HR. I haven't heard of it when a patient has high BP - and sometimes high BP cause low HR. I think it's permament in most cases, so get lots of opinions before doing it. Hang in there. You sound like a great mom and she is lucky to have you!

Sorry you have to deal with this. I think 30 mins of exercise a day is a lot for someone with POTS and probably few POTS patients could handle that. Don't let your husband's focus on your weight affect your decision whether to exercise. It can just make your POTS worse, especially if your POTS was triggered by exercise in the first place. I am sure a POTS doctor could verify that if it would help your husband. And I am sure the counselor won't agree with his take on how criticism will help you become a perfectionist. Take care of yourself!

Sally, I agree with you - it's about thinking what you CAN within your comfort zone, to move forward. One thing I forgot to add to my list: a therapist!

All of these have been important to my functioning/recovery Medications - mainly betas and paxil. Trying new medications and weaning off meds when I didn't need them anymore Exercise - recumbent bike, yoga, pilates Fluids/organic broth Compression stockings (thigh high) Controlling acid reflux Improving my sleep Breathing exercises Learning to manage stress and calm my body down Pacing myself Getting a flexible work schedule Acceptance - rather than fighting/questioning - accepting that this is what I have and trying to work with my body Time

Some days are better than others for drinking. Sometimes I feel little to no effect, other times I have to spend the next day or two in bed. I never drink if I have anything important to do the next day.

I am doing it now. I was on 20 mg of Paxil, one pill. My doc gave me 2 10mg pills, which I cut into 1/8. I have been reducing 1/8 pill about 1mg every month. It will take me another 6 months to go off but I have had few side effects. It's slow and painful, but it's the only way I can keep working and have a semblance of a life. Last year I tried it 5 mg at a time and it didn't work. I didn't have any side effects when I started Paxil but it is hard coming off. I googled it and this is how many "healthy" people come off SSRIs - and I had to go just as slow when coming off my other POTS meds.

You're right that healthy friends, no matter how great they are, may not want to listen to anyone complain all the time about being sick. You should definitely tell them a little. They might not understand even if they wanted to - even as adults many of us have trouble with our friends and family members not "getting it." That's why this forum is really great, but not a substitute for a real live person, of course! A good therapist could be helpful. It helped me a lot. Netflix is also great when you're sick. I think I spent the first few months catching up on movies I always wanted to watch, then TV shows. A great way to lose yourself. You seem pretty smart for 16, BTW!

Awesome!

Have you joined dyna kids? Maybe it'd help you talk to others your age to learn about how they cope.

Exercise (though not Dr. Levine's protocol) has helped me with all of my symptoms, including heat intolerance. When you start to feel better, which has happened to me gradually over time, you just feel better overall and have fewer/less severe triggers. Not all POTS patients have GI symptoms - I don't know the numbers - many/most probably do, but many don't. That's the point - that we are all so different. In reading his latest publicity, he is not presenting it as a cure all or saying that it works for everyone. As someone who took BBs for many years and had them help me, the side effects were hard to deal with. Any alternative is good. Even if it works for 20% of the people that is helpful. That being said, we DO have to get him to stop saying "Grinch" syndrome!!!!

I just went and did the same thing with Park Hopper passes and Fastpass. It helps to stay in or really close to the parks and to go in the off season when it isn't so hot or crowded. BTW, lots of people with chronic illnesses use cooling vests. I know people with MS in particular definitely use them, so the person you saw may not have had POTS.

Do you guys think it would be helpful to send letters or emails to Dr. Levine to stop calling it Grinch Syndrome? I'd be happy to work on a form letter or email for everyone to send if people would be up for it...would love to make it stop!

Does anyone know if the article included the actual protocol? Would be curious to know the exact exercise and time period. JAMA is one of the best medical journals, so glad for the publicity for POTS oops I mean "Grinch Syndrome"

I believe that my heart is a "normal" size, but there is a range of "normal" and maybe increasing our heart sizes helps. Sort of like my baseline BP is "normal" at 90/60, but I feel better on the higher side of "normal" 120/80. I do hope some of his patients politely tell him to stop calling it "Grinch Syndrome". I certainly would have no problem (nicely) saying that to his face if he were my doctor! Ultimately, though, I am willing to overlook his attitude and terminology if he is able to come up with anything that helps even a small group of people with POTS. That is so important, b/c there aren't many people even doing research on this.

If he blacked out it really doesn't sound like a good idea, but check with your dr. I am 7 years into POTS and finally felt well enough to try a roller coaster - after clearing with my doc. Even then I didn't feel safe trying the scariest ones in the park.

Paxil was a godsend for me. I never had any side effects, though. I've heard you have to give it up to a month to work. You can also start slowly (less than 1 tablet) and wean up. I do that with all of my POTS meds (as well as wean off using fractional doses), having learned the hard way that my body can't handle the "normal" pace. Also, sometimes you have to try different SSRIs to find the right one. I don't know how often Zoloft is prescribed for dysautonomia, but Paxil and Lexapro are the ones you hear about most often. Even then SSRIs don't work for everyone. Good luck!

I would sign up for the protocol, except I don't want to go off my meds. I can exercise. I do lots of yoga and just started up at the gym again after more than a year. I worked out 25 mins fri and 35 mins Sunday 1/2 rowing, 1/2 recumbent bike. I was fine during and after the workouts (which is a HUGE improvement to my previous reactions to working out --- headaches, nausea, weakness, tachycardia), but last night I had a POTS flare up which hasn't calmed down yet. I know it is from the exercise --can't be anything else. I'll keep it up, but maybe slow down a little and increase in small increments. There are mixed reactions here re: Dr. Levine. I didn't like what I read about him in the Wall St Journal article. But if his protocol works on even a few of us, that is fabulous!!! I am especially impressed by those of you that can do this from a wheelchair. Keep up the good work and keep us posted on your progress.

I've had the best luck by asking docotrs for things - like tests and medicine. I think doctors appreciate it and like informed patents, as long as we are polite and reasonable. Maybe your friend doesn't understand rare illnesses...but most of us have doctors who don't know much about POTS. The only option we have to feel better is to ask.

The generic brand from brightlifedirect.com is around $30 and works just as well as Jobst/Juzo. The brand name ones are a lot more comfortable, though. Maybe start with the cheap one. Ask your dr what level of compression you need. The literature seems to recommend waist high. I can't tolerate waist high due to stomach issues., so I use thigh high Others here have had a different experience, but knee high didn't do much for me.

Thanks - there is a studio right near me which has a cheap intro special. I'll check it out in a couple of weeks when things calm down

Thanks for sharing! Would appreciate any info on brand names of good products.

ITt's definitely a side effect of SSRIs (Prozac). Not sure about midodrine - but do you take it at night?

If you knew me, telling me to educate myself is laughable. I'm stable, able to work and exercise, so not too concerned with fear or revamping my current treatment. We started off talking about regulation of supplements and the discussion has veered off on a tangent where you are telling me to educate myself and that medicine is "all an experiment". I can see why we disagree on things. While I repsect your right to have your opinion, this not a productive discussion that I care to engage in any further.

That's not correct - it's a lot more complicated. The hard part about our treatment is that our vital signs (HR and BP) might look "normal" even though we are feeling horrible. HR and BP are an important indication of how we're feeling and how to treat ourselves. When my BP is low, I salt load and put on compression hose and feel a lot better. This treatment works when my HR is high and my BP is normal. That's because in some people with POTS, even if your BP is normal, it helps to take BP boosting meds. If your heart is beating too fast to maintain a normal BP, taking midodrine or florinef can take the burden off the heart and lower your HR. I think, the question is whether the midodrine is helping - are her overall symptoms better when she is taking it? You can also consider other meds, such as beta blockers, if you don't think the midodrine is helping. I guess you will have more info when you see a specialist. Hang in there the meanwhile!