yogini

I don't think that POTS is a great name, but I think that if people had heard of it, it wouldn't matter so much. There are a lot of illnesses, like MS or Lupus, that have abbreviations or strange names. People don't know what they are, but (for the most part) have some idea that they are real chronic illnesses. It would be nice for POTS to be recognizable. One can dream...

It would be interesting to see this researched on POTS - I think the mechanism in our bodies may be different than what is going on with the astronauts. When some of us have nerve damage or low blood volume causing our POTS, it might be harder to correct. And if it's just a matter of getting lymphatic fluid moving, maybe something like stretching or yoga would also do the trick? Just thinking that all that bouncing would make me nauseous! But if anyone tries it, I'd love to hear about it.

Somtimes I feel dizzy/tired/out of breath. But the worst is when I get a dull headache or nausea during or after. The dull headache used to last for a few days.

I too am shocked. It's very strange that they left her hip dislocated for so long and that her cardio couldn't be paged over the weekend. In any case, right now the most important thing is for her to fully recover. Please keep us posted.

Fire- You probably aren't out of shape, it's just the POTS that's wiping you out. If you're interested in DVDs, the ones that worked for me are AM/PM Stretch for Health and Pilates Complete for Everyone. I just skipped the parts I couldn't do and stopped when I was tired! Good luck with your classes.

Sorry if I am responding to the wrong thread. Feel better Flop...and Melissa too!

I think the spinal issues are associated with EDS and other conditions that often coincide with POTS; however, I don't think they are a part of POTS or autonomic nerve damage. I'd check it out with your doctor, just to be sure, especially if it's new and lasting.

I'm not sure what you mean by "theraputic hose" vs. "support hose". What compression are you currently wearing? I think 30-40 is what is generally recommended for POTS, though some people benefit from having greater compression. I don't think anything is necessary, you just have to go with what helps you. There are some times when I wear hose, and otehr times not at all. You can also try getting your insurance to cover all or part of your costs. Good luck!

Ouch. That doesn't sound like fun. How about starting a little slower? I started doing pilates at home on a DVD. Did about 5 minutes at first and worked my way up to classes/personal training a few months later. Exercise is a good idea, but there is a fine line between what is helpful and what can make you more sick...

Learn to accept your condition. This is not going to go away quickly and may not go away at all This is not the end of the world, you can still have a life with POTS Read everything you can so that you know all the symptoms and treatments Be willing to experiment with different medications, supplements, etc. Get thorough testing and comptent medical help - this may take a lot of work to find Go slowly with adding or changing medications - don't try to do too much at once Don't be afraid to ask questions Be prepared for a lots of ups and downs and rough periods Pace yourself with activities and don't push too hard. Learn your boundaries If you gently push yourself, you may be surprised at what you can accomplish

I drink broth instead of taking salt pills (b/c I can't stomach the pills). The organic broth I get at Whole Foods has 750 mg sodium per cup. I drink it twice a day to supplement my sodium. Do you know what is causing your potassium to be high? I think the balances of potassium and sodium are related, so wondering if it is connected to your POTS.

Hi, I understand why you are questioning taking florinef with those kind of blood pressure numbers. Call your doctor to double check whether this makes sense in light of your BP. If you feel comfortable, you could even ask whether a beta blocker might make more sense. Although your heart rate numbers seem low. Have you had a tilt table test?

I have a question about this, because I'd rather wear Spanx than compression hose. But isn't compression hose specially made with gradiated compression to squeeze the blood upward? I thought Spanx was just to suck in your body parts and make you look skinnier?

Hi. I just wrote a longer post which got lost. Your life sounds a lot like mine a few years ago. I spent a lot of sleepless nights thinking about work and didn't sleep for 2 weeks straight once during a particularly rough time at work. I think the lack of sleep makes things seem worse than they are, so the most important thing is to find a way to fall asleep. For me that meant going to the dr and getting a script for Ambien, which I take occasionally and works great. Benedryl OTC also works well. Taking a break helps a lot. Can you go away somewhere for a few days or just take some time off and hang out at home? Try candles, relaxation music, treat yourself to a massage...or watch funny movies...whatever helps your mood... What's helped me in the long run is yoga (along with breathing exercises and a little meditation). I now feel much better, both mentally and physically.

Hi. It sounds like you are getting sick because your body needs the lexapro in order to function. If it is helping you, maybe it makes senes to continue.

You've posted a great question. Theoretically, POTS shouldn't have any affect on the results of an inner ear test. If you have any issues with the inner ear, I would go ahead and have the testing, because you may have inner ear issues in addition to POTS - some here on the forum do. Beware, though, because inner ear testing is not always clear, and they may give you a diagnosis bases upon semi-positive test results and the symptoms you're having. That happened to me. I went to 3 months of inner ear rehab, which was supposed to clear up my ear condition. When the symptoms came back, we realized it was POTS all along. The rehab actually helped me to regain my balance and get back on my feet, so I can't complain too much!

I got mine yesterday afternoon. I usually feel fluish for a day or so, but that hasn't happened yet, fingers crossed! Just have a sore arm. My dr mentioned there's a new strain of flu this year, so it's important to get immunized.

My monitor sometimes picks up random electrical signals which screws up the reading. Being around anything electronic can do this. Not saying your heart rate wasn't 200, but something to be aware of. The next time you get such a HR, you may want to manually check your pulse to make sure the reading is correct....and if it is really 200, I would at least call the dr.

Hi. I don't think that we can retrain the ANS per se, but I think that at least some of us can strengthen our bodies a bit to compensate for a weak ANS. I still have POTS, but feel a lot better after strengthening my legs, doing breathing exercises and studying yoga. For those whose bodies are prone to responding and healing, I think we can do things to help the process along.

I drink organic broth. It has no sugar and tons of salt. It always perks me right up.

How much florinef are you taking? It does sound like you're retaining water as opposed to gaining weight. Maybe you need to just cut back on the dose...

I used to get massages every couple of weeks or so. I think my POTS symptoms always flared up when I was stressed out and couldn't get any sleep. The massages helped me to relax and sleep, but they didn't really help my POTS symptoms directly.

I'm actually taking Paxil for POTS, not anxiety.

Thanks, Flop. I was hoping you would answer. Is there anyone out there that takes Paxil CR for POTS? I've been having serious sleep problems over the past month. I take my Paxil in the am. I sometimes wake up feeling wired until the Paxil takes effect. Since regular Paxil is working, I would be hesitant to try the CR unless I knew it worked better for POTS and/or would not keep me more awake.

Sorry to hear that the fevers are continuing and that she's back in the hospital. That is never fun, but I'm glad her situation is being taken seriously and that she is somewhere where she can be monitored and investigated. Keep us posted!