yogini

Hi, Some of the things you're describing (such as being though of as "normal" by all of your drs) are pretty common for people with POTS. I think the thyroid tests you need can be done by any good GP or especially an endocrinologist. I'm not sure it's necessary to see a "thyroid specialist" outside of your insurance and there probably aren't too many people here on the forum who have tried that avenue. It can be dangerous to play with your throid and take medication to decrease or supplement it when your tests show up as normal. I would make sure to do lots of research before seeing such a person.

Some people have to try a few different beta blockers before finding the right one. But if your HR is already low, beta blockers may not be the best medicine for you. You may want to look into some of the meds that increase your BP like midodrine or florinef. These can also be taken together with a BB, which can help to counteract some of the bad effects of the BB.

I get the same symptoms even when I'm watching a movie where people are moving too fast. I think part of it is the motion/acceleration, and the other part is the sensory overload of seeing things go by too fast. It helps me to close my eyes when I'm riding in a car, but I assume you don't want to do that when driving a scooter!

It's not unusual to have issues with exercise, but if you're having chest pains, etc., you may be pushing yourself a bit too hard. I think cardio is the toughest form of exercise for POTS. Things like pilates and swimming, where you're lying flat, tend to be a bit easier. I had to work up to it by starting with pilates and going slowly with cardio - starting at 2 minutes and increasing in small increments. I couldn't afford to exercise to the poitn of getting sick, because of work. Easing into things really helped. Stretching before and after and wearing compression hose also helps. Beta blockers can be a double-edged sword - they help with HR, but lower BP and have exercise intolerance as a side effect. You might want to do a search on exercise - there is a lot of helpful advice in prior posts.

The symptoms you're describing sound like they could also be caused by Mestinon - it has some strange side effects and you just started taking it. You may want to touch base with your dr on this.

I alternate between Jobst and brightlifedirect.com's generic brand, Allegro, which is also good and very reasonably-priced. The website offers free shipping and no tax for internet orders.

I've found that these type of ancillary symptoms seem to go away when my main POTS symptoms are under control. So rather than trying something like Xanax, my vote would be to stick with the more traditional POTS meds which help all of your symptoms as a whole.

I'm definitely hypersensitive to sensory stimulation. I keep my phone unplugged a lot of the time because I jump a mile every time it rings. Bright lights are awful, and I even wear sunglasses indoors sometimes too!

That's quite a recovery! This is great news, and definitely gives us all hope for improvement. I too would love to hearing more details on your treatment and physical therapy.

I think this was a study done by a high school student, so it's not necessarily conclusive evidence ...though it probably doesn't hurt to be safe. My Polar heart rate monitor seems to act up sometimes when I'm using my ipod, so I wouldn't be surprised if the ipod sends out an electrical signal which could mess up a pacemaker.

Hi dizz, Sorry you are having such a bad spell. I've been having increased dizziness for about the past 4 weeks - I was wondering whether it has something to do with the change in seasons, but who knows! I definitely get the floor moving and mine is from POTS, not inner ear (though I agree it might make sense to see an ENT). Is your BP lower than normal? I've noticed my BP has been a bit lower than normal, so I have been salt loading and slowly trying to cut back on my beta blocker...but just started a week ago and going really slow. Feel better soon, Rita

I don't mind the looks or the sweating. I just feel incredibly hot wearing compression hose, which seems to trigger my POTS symptoms. I can barely tolerate them once it hits 70 degrees...although sometimes I put them on once I get to the office, since it's always too cold there.

Shortness of breath is also a side effect of BBs - I believe this is another reason why those with asthma have trouble tolerating them.

I'm guessing that the reason beta blockers are so effective (in many cases) for POTS is that they reduce the flow of adrenaline to the brain. Many of us have that constant over-adrenalized feeling. I'm not too familiar with calcium channel blockers, but haven't seen too many people on the forum that take them. I thought they lowered BP?

Hi there, I'm sorry you've had to deal with this ordeal at work. I have a friend who complained about a sexual harassment situation at her work and after that, she felt like people kept trying to find fault with her performance at work in order to build a "case" against her to justify her termination. It sounds like this may be happening to you? It is generally OK to terminate someone for any reason, except discriminatory reasons. The problem is that the discrimination is hard to prove and so employers try to point to "problems" with performance. It makes me so sad that this still goes on. I am impressed that you were able to make it into work with such high heart rates. I'm a wimp - I can't walk for more than a few minutes once my HR reaches 115. As for anxiety, I think it's perfectly reasonable for you to feel anxious given everything you're dealing with. Even though my POTS is mild compared to most and my co-workers are very cooperative and appreciative for the most part, working has been a big struggle for me. Our doctors tell us to be "active", but it is so difficult. I wonder if the thinking on this will change as more is learned about our condition.

Hi, thanks for sharing the info. The device looks really interesting. How do you use it?

I've tried several times, but can't stomach any kind of salt pill, even Thermotabs. When you actually measure it seems hard to get enough salt through food and Gatorade, unless we eat fast or frozen food all of the time (which I can't stand). If you can tolerate a salt pill, that's great. I drink a super salty organic broth twice a day. It has 750mg of sodium, which is almost as much as a salt pill.

I think 25 mg is the lowest dose of atenolol. When I was on a full pill, I cut it in 1/2 and took 1/2 in the morning, 1/2 at night. Now I take 1/2 in the morning, 1/4 at night. Breaking it down does help. I'm wiped from taking a full pill in the am. It didn't used to be this way - I used to take 1 1/2 pills per day, even 2 pills for short periods, without much problem.

Thanks, ladies, for your posts. Today wasn't great, but it was actually better than yesterday, even tho I went to the office...so I'm optimistic that it's going to work, and that I can keep going further. I'm currently on 1 pill (25 mg) of atenolol. Up until Dec, I was just taking 1/4 pill, but had to up my dose due to a bad flare up. So now I'm trying to get back down, but taking it 1/4 pill at a time. I'm giving myself the summer to do it...though frankly I will be thrilled if I can even get down to 1/2 pill. OLL, I so agree with you abou the need to go slowly. I'm impressed that you can manage to cut your pill into 1/8, though! I have a hard enough time cutting mine into 1/4. Half the time it crumbles and I have to throw part of the pill away...thank goodness my copay is less than 50 cents for 90 pills!

I reduced my atenolol by 1/4 pil a few days ago and am feeling really dizzy and having other strange symptoms, like numbness in my arms. When I walk, it literally feels like the floor is tiliting in different directions. I've also slept through most of the past 2 days. This seems to happen to me each time I reduce my meds - I went through this the few times I cut down on atenolol and also when I went off of florinef. I'm just wondering whether anyone else has such extreme reactions to changing their dose of medicine by such a small amount? It seems that many of you are able to change your meds at the "normal" rate. I need to cut back b/c I've been feeling really tired and lightheaded and my HR has also been on the low side. At least my HR hasn't come up after reducing the dose and when I am awake, I actually feel more alert that I did before. I just hope I can hold out until my system adjusts...and survive work tomorrow!

Glad you made it home. I hope the surgery and the "rare thing" they caught will lead to much improvement. Keep us posted on how you're feeling when you're able.

I took sudafed a couple of times early on when I didn't know that tachycardia was a side effect. I experienced mild tachy when I took it, but nothing too bad. I've stuck with saline nasal spray and inhaling steam ever since then just to be safe. I do remember reading somewhere that pseudophedrine is sometimes used as a treatment for dysautonomia, I think to raise BP.

Usually when my legs turn blue from pooling, it's like a dark purplish blue because too much blood is collecting in them. I've occasionaly had fingers turn a more bluish blue because they aren't getting enough blood. This is what I'm envisioning is happening to your lips? In the case of the bluish blue, it is likely due to a lack of oxygen. I'm not familiar with most of your medical conditions, but POTS or asthma could certainly be contributing to the lack of oxygen. Are you otherwise feeling fine when this symptom is happening? Does lying down help the symptom?

Some days when I am late taking my dose, I feel it right away. Other days, I don't feel it at all. I don't know about all of the particular meds that your daughter takes, but many meds do stay in your system for a while after you're off them. Midodrine is one of the few that wears off right away. If you do decide to go off your meds, definitely do it under the supervision of a dr. There are some meds where it's OK to skip a dose (like prevacid or midodrine); for other meds, like beta blockers, it's better to taper off rather than stopping suddenly. Also, you may want to think about playing with just one med at a time. If she does everything at once and starts to feel symptoms, you won't know which drugs she needs and which she doesn't.

POTS is strange in that often you feel OK while doing activities, but feel sick after - sometimes it can even be a couple of days later that things catch up with you. You will learn your limits over time - usually you figure these out through trial and error. Even when you know your limits, you will have flare ups sometimes. Although meds help, for those people who do improve/recover from POTS, it usually happens very slowly over many months/years.