yogini

If it's a new symptom, I would talk to the dr about it. A continuous headache is not necessarily a part of POTS. I do agree that Advil is a lot more effective than Tylenol - but there are prescription meds that might be even better.

I have to say that Gilmore Girls is one of the best shows I've ever seen. I thought it was a teenage show, but a guy I met and briefly dated told me about it. Saw the whole thing on DVD last year. They also have reruns on ABC Family.

I think there are two kinds of theories - ones posed by us - just guessing, and ones developed by people who specialize in this area and do years of research and clinical practice. If you read the literature, there is actually at least some (in my opinion a good amount) of scientific info about POTS and what causes it and what is going on in the body, although there is a lot more that is unknown and needs to be learned and deeper connections that will come out with further research. I do think it is a diagnosis and not just a collection of symptoms, especially for those of us that don't have anything else wrong going on. I have had POTS for 5 years. I decided a long time ago not to worry about why I got this and what exactly is going on in my body, but rather to focus my energy on treatment, exercise, and anything else I can get my hands on to feel better. That is the only way I have been able to make it through. There are lot of theories posted on this forum that people feel adamant about, but the best knowledge right now is from the well-known POTS doctors. I think it's healthy to wonder and to discuss, but only so much is known and I believe that it will be years before we know more.

I don't have any other conditions either. IT does not have to be secondary to anything. I suspect there are more people out there that have POTS that don't have anything else - I know this because my drs mention other patients that they see.

Firewatcher, I tend to agree with ramakentesh that POTS relates to blood flow and nerve damage - I have read a lot on this topic, and all of the scientific to date evidence points to that. I am not a scientist, but I would guess that, in people with autoimmune conditions, the autoimmune system attacks the nervous system causing POTS. I know nothing about Lyme, but do think there is a Lyme connection, just based upon posts here. I would guess that lyme damages the nerves. Is Lyme disease an autoimmune disorder? I thought it was bacterial?

I was surfing the web for portable oxygen and found this product, which looks like oxygen in a spray can: http://www.oxygenplus.com/ It sounds interesting and is only $15 at my local sports store, so I think I will check it out.

Kaye, it's great that your friend has a machine at home. I wonder whether regular oxygen works for us? It would be cheaper than hyperbaric. Does anyone try it at home?

Hi, I have POTS with no autoimmune issues. I believe a virus attacked my nervous system and made by body unable to maintain BP. I think the virus went away, but the damage was done. I am not sure that everyone has an autoimmune cause. There are many people on here with EDS, mitochondrial disease and other genetic issues which caused their POTS. I think hormones also play a part in things for women, which might be why some people develop POTS after pregnancy. It is interesting, though, to read about everyone's theories. There is so much that is still to be learned abour our condition and I hope drs continue to do research so that they can figure things out.

Great post. I was wondering that b/c I saw Dr. Oz try it on Oprah and he said he felt calmer and more relaxed. I also know my non-POTS friend went skiing in CO and got altitude sickenss and felt better after going to the oxygen room of her hotel. I think it should help us, but maybe it's too expensive and viewed as a spa treatment. On Oprah they said a lot of celebs do it. It would be great if it became more affordable and covered by insurance!

Thanks so much, guys. And, can I just say yikes!!! After reading your replies, I think I'll stick with the MD and the PT.

I saw a dr earlier in the week for my chronic back and neck pain. She is part of a clinic with physical therapists and a chiropractor. She said she wants to take a multifacted approach to my pain, including physical therapy, injections, etc. She asked me whether I would be open to chiropractic treatments, and I sad probably not. Then I met with the physical therapist, she started massaging my neck and said it was way out of alignment. She said she could help me, but a chiropractor would be much better and that his alignments would make me feel better right away. I've never really been into the idea of a chiro. I also remember that a long time ago, on the Dinet main page, it said that neck adjustments could be dangerous for POTS. I can't seem to find that anymore, so maybe it was deleted. I am not getting these adjustments for POTS, but I don't want to do anything that would hurt my POTS. I'm in a pretty good place right now POTS-wise. For now, I'm not making any decisions, but just wanted to get your thoughts. Thanks!

They are separate conditions with some overlapping symptoms. Did you have tests to determine the adrenal issue? I know that there are some tests where they inject you with hormones and then draw blood to see how your adrenals react. POTS is determined by the TTT. I think the adrenal issue can be more easily corrected with meds than POTS.

Well, I went to see my dr today. He felt my back and heard my trigger points pop and gave me a referral for 8 visits with a pain management dr. It's actually great, because my PCP is pretty conservative about treatment and it was his idea to send me to a specialist. This pain doctor apparently does trigger point injections, electrical stimulation, massage and all sorts of other things. So I am extremely excited. I've lived with this pain and tightness my whole life....waaaayyyy before POTS. I've paid oodles out of pocket for massages, which helped a little, but never got rid of it. And to think there is a doc that could have helped me all this time. I will be calling her first thing Monday am!!!

Your sibling is smart. The easiest thing would be if you don't pick up the phone. Use that Caller ID, screen your calls or unplug the darned thing! I don't know if you feel comfortable doing that. It's hard to put yourself first, especially when you're not used to it. But if you don't put yourself first, noone else will. When I was my sickest with POTS, one of my closest friends was out of work and wanted to live with me. At the time, I was fortunately seeing a therapist who talked me into my senses and told me that I needed to put myself first and there was no way I could take care of someone else. What my therapist told me to say was, "I really wish I could help you, but I can't." The conversation went better than I expected and our friendship is still strong. If you feel you do need to answer your mother's calls, I think the best thing to say is simply sorry, no. You could invent excuses, working weekend, going away for the weekend, donating a kidney, but eventually those would run out. If she complains about being sick, just say that you're sorry she's feeling sick. If you try to explain or prolong the conversation, she will try to convince you/guilt you into helping.

I've seen a few cardiologists and they all give me an EKG the moment I walk in the room, whehter I saw them a week ago or a year ago. I think that's pretty standard practice - maybe a liability thing. Other than that, my docs like to do a blood test every year, which I like. But they are pretty willing to renew prescriptions without my having to go in. My doctor tells me to come twice a year for checkups, but if nothing is wrong I usually only go once a year. Same with the dentist - I was diagnosed with minor periodontis a long time ago so they tell me to come for cleanings 3 times a year. My insurance only covers 2, I only go twice and periodonits has not come back. I think you can partially avoid the confrontation and the expense just by not going as often as they tell you to - unless you feel something has changed. If you don't want the tests, you could make it a money thing and just say that you'd prefer to have just a checkup without the tests because you can't afford it and that you would prefer not to repeat the tests unless things change. I'm sure that other patients request this, especially if they have to pay out of pocket.

Yesterday's show had Michael J Fox and was about Parkinson's. It was also really good and moving. I feel like I can related to anyone with any type of chronic illness. Let's hope she keeps doing more shows like this.

I think there is a mind body connection which needs to be investigated a lot more by scientists. I think the proponents of the mind body connection often take things too far and say that everything can be helped if you just put your mind to it. That is particularly hard to hear for many of us, since doctors who don't know POTS try to tell us that it's in our heads. I remember last year Oprah had a woman who decided to skip breast cancer treatment because she was instead thinking positive thoughts. I wonder what happened to that woman, but I wouldn't want to be her! I've had POTS for 5 years, and have done breathing exercises for the past 4 years and yoga for almost 2 years. These are supposed to bring the autonomic nervous system in line, but I still have POTS. I feel better doing these things, but at the end of the day I still have a physical condition.

Thanks, guys. Broken Shell, I think you're right. I think the knots are related - they may be controlled by the autonomic nervous system. And if nothing else, getting rid of them might improve my circulation and blood flow. I forgot I have a book on Trigger Point therapy which I am going ot start reading. And I will also look into the kinesiotape.

I've been to Europe with POTS a couple of times, and actually lived in Paris last summer. If you haven't been, it is amazing and I would definitely go for it. It's not as user friendly as the US - buildings and facilities are older. There aren't as many escalators, elevators, etc. and often they are lableled handicapped only. People may look at you strange for using them, or even get mad at you, but I would just use them anyway. I am not in a wheelchair, and I used them. My best advice is just to carry around what you need - water, etc., be prepared for the unexpected and take things at a leisurely pace. Running around all over town doesn't work with well with POTS. I would avoid the subways and take cabs to get around, or public buses. Enjoy!

I think there are several people who do smoke, as people post about it from time to time. You can do a search through old posts. I think anecdotal evidence is just that, and not scientific. Smoking is very taxing on the body and and the cardiovascular system, and I think any benefits to POTS would outweigh the risks. There are other more healthy ways to boost your BP.

When I woke up this morning, I saw spots all over the walls. I think this was a side effect of the bystolic. It went away after I closed my eyes after a few minutes. Other than that I felt normal. I'll try it again the next time I'm tachy.

Yes, I feel awful when my HR and BP are "normal." How is your BP when you are feeling bad? You may want to check. I don't think an HR of 115-120 is all that low, though.

Does anyone have lots of tightness in the shoulders? My shoulders are really open these days. I hurt my wrist in yoga and now have to do everything on my forearms, which a shoulder-opening position. Normally I'm one of those people who is hunched over and has really bad back pain. I have huge knots in my back and shoulders that pop loudly when I rub them. Now my back pain has gone way down. And my POTS symptoms also feel better and I feel more alert. I also notice the opposite - when I feel the worst, my shoulders are extra tight and painful. I am wondering whether there is a relationship between shoulder tightness and POTS? (I don't have EDS, by the way.)

I just got a script for bystolic. I'd been taking atenolol for years. I weaned down to 1/8 pill last summer and then weaned off of it in January. Since weaning, I've noticed my HR gets high sometimes. The problem is that even when I take 1/8 pill atenolol, I feel dizzy and tired. So I am going to try bystolic as needed. The pharmacy was out of the 2.5 mg pills my doc prescribed. I tried a fraction of the 5mg sample the dr gave me and so far I feel a little funny in the head and my HR is slower. We will see how I feel tomorrow! If it doesn't make me too tired, I may go back to taking it every day...

Just wanted to add: One thing that has helped me exercise and recover more quickly is wearing compression hose while exercising.