runningshoe

Hi It is a fine balance - hope and acceptance. You need to remain hopeful for better health while still accepting where you are now. This is the challange with a chronic illness. I am two years in with pots. I am much better but still have symptoms from time to time. I would say my illness is managed, not gone. Since pots can be caused by so many different things it is hard for us to compare to each other. My dr said originally maybe 18 months. Recently he told me that he is seeing pots patients able to come off meds after 3 years. I can live with where I am now. I ache to run again but so far that doesn't seem possible. Remain open to the prospect of healing.... Happy holidays!

Did you have to do the pilates 100 where you do the wierd fast breathing? I can't do that either. I can do other exercise but not anything that involves unnaturally changing my breathing. Try slowly stretching and simple exercises at first. Good luck!

I hope that 2009 brings you the resolution and peace you deserve.

Pots and anxiety are very intertwined for some of us. When you are out in a social situation it is worse because you fear being potsy or fainting in public. Plus you are probably trying not to be rude by sitting down when everyone else is standing, or bouncing around doing a counter move or whatever you do when you start to feel funky. The worst is being in a conversation with someone while standing and it hits you that you know they are talking but you can't hear or focus anymore because you are going down! Don't blame yourself - this is anxiety producing. Plus everything is "turned up" when you have pots. The best thing I did was get a psychiatrist involved in my medical care. Time, therapy and learning my limits has helped me. I rarely feel the anxiety any more. Good luck!

Has anyone heard from Mrs. Burschman? I miss her smart and funny posts.... I hope she is okay!

I have a lot of chest symptoms as well. I am learning to live with them and try to lie down and distract myself. Just an aside - be careful with ativan. It is useful for intermintent occasions and for night time sleep but my dr said to not use during the day unless in a terrible situation. Hang in there!

I have never seen a thread making the connection between ic and pots. However there are many of us on here with ic. I had ic in my 20's and then went through 14 years of remission. When pots came along it only took a few months before my ic returned worse than ever. I attributed it to the stress on my body and to an unfortunate crash through menopause (long story, shut down ovaries). I do have ibs like symptoms and I definately think that is the pots. THe bladder I am not so sure. My typical symptom is just plan old burning pain. I have wondered if ic was connected to: the high salt pots diet, the stress hormomes and or pots related poor circulation (pooling blood etc). Hmmmm lots to think about. My heart breaks for the mom whose said her child had it a 2. I am send you all healing wishes and hopes for better days.....

I can do anything in the am. I am a mess at night. Go figure!

If I drink my chicken broth, lie down for a bit each, sleep okay - then my heart rate is very well controlled. I may get tired but a heart monitor would show nothing funky. However there are times when I do all the right things and I still feel potsy.

Looks good! I followed the link but am not sure how it works........

Sending you healing wishes and lots of prayers!

Every good day is like a gift - fun to unwrap and delicious to behold! I am so glad you were able to enjoy your birthday!

I HEAR you! Just wanted to say that I understand what you are feeling. I never had to think twice about how much I stuffed in to a day. Now I have to think about everything and set limits all the time. I am thinking of you!

Hi all! I was treated for high bp for 8 years before pots. Now I am up, down and in between! Crazy....

Hi I had high bp for about 8 years before I got pots. I think this is why I have only passed out one time - my bp just doesn't drop low enough for me to faint. I do the high salt diet and the florinef to increase my blood volume and take beta blocker to control my hr and bp. It is a fine balance and sometimes things still get out of whack!

I have not been around much lately so your name is new to me. Hello! I have had facial burning off and on. I have gotten the shakes after a pots episode. I was healthy until I went (crashed) into menopause. I believe hormones played a major role for me. My experience with pots is that the symptoms are always changing and it makes you question yourself and then you come here and ask if anyone else has experienced what you have. The answer is usually yes! We are not crazy but our bodies are!

Have you been to the hospital associated with Dartmouth? Can you come to Boston for some treatment? Hang in there!

Very interesting. Can you drink tea?

This topic is fascinating and something I have been trying to "tease" apart in my own life. Typical situation: heavy feeling in my head, fading out, shot of adrenaline all within nanoseconds. Okay so was that a pots symptom triggering a pots reaction or was it just a funky feeling that I am afraid will be the start of an episode so I panic? My dr says it all is happening in your body and brain so don't try to figure out what comes first. COMPLICATED!!

Thank you so much for writing this post!! It was great to hear. How did you know yours was caused by a virus??

Sorry to hear your wife's story. So many of us seem to have been hit out of the blue. Florinef does help me but it took a while. Did you give it several weeks and try increased doses? I have been on .15 for a while but was up to .4 at first. I also take nadolol to control the tachy and because I often have high bp. I do not take salt tabs but instead consume a lot of chicken broth. I get the salt and the liquid with this. I shoot for at least 4 grams of salt a day. I think that pots can really affect our ability to function on two levels. The first is the obvious, we can't stand for long etc. The second is equally debilitating; we become very tuned into our bodies (survival) but this increases our anxiety level which makes our bodies even more strung out. I guess I should not speak for everyone, but this is what I have realized is happening to me. For that reason I have been seeing a psychiatrist who medically understands what is happening with my body, but can also help support me as I determine what is pots and what is my reaction to pots. I have become "braver" about doing things because of this. I know what my limits are and I have learned to respect them while still trying to live a life. That may or may not help your wife but chronic illness is so taxing that I have really benefited from having some outside support. There was a mystery diagnosis show on recently which featured a women with similar problems to us (The women who kept falling down - check it out on Discovery Health) and eventually she moved to a cooler climate because of her condition. That might be impossible for you, but I thought I would mention it. Good luck and I think it is wonderful that you are advocating for her. Pots can be a very isolating illness. I know my husband is understanding to a point - how can he really know how I feel? Every second I am regisitering some body change (too hot, too cold, goosebumps, heart racing, dizzy, headache, etc. etc.). It can make you feel like you are nuts!!

I was told 4-11 grams of salt.

I am going to have this test too - I thougt you could drink water even though you were fasting...?

Tearose said it so well. Trying to live in the moment so you don't miss out on life even though the moment doesn't always feels so great....Hoping for a better future with out focusing on what is wrong with the now. I have a new trick that helps me instead of repeating phrases like "I will heal" I now thank my body for the healing it has been able to accomplish up to now. It just feels better and allows me to stay a little more in the present. I too hope that pots will fade away....but try not to wish away these days.

When I post I am always anxious to see the respones. Sometimes I feel dissapointed and sometimes I am pleasantly surprised. Part of my learning to live with chronic illness is getting away from the computer and taking a mental break from pots (as much as is possible). I am trying to only check in once or twice a week so if a post was only left on for a day or two I would miss it. I hope that you find answers and share them with us. I will be very intersted in what you and the doctors learn. Thanks for being willing to keep us up to date! Lina