yogini

Hi, I live in NYC. I agree with mom4cem. I've seen or contacted several of the doctors listed under NY. I have found that they are unavailable (relocated, not accepting new patients), don't know enough about POTS, etc. So unfortunately I don't have anyone to recommend. Like Angela, I also went to Mayo a few years ago, but they do not help with ongoing care. I am managing right now through my cardiologist, who doesn't know much about POTS but at least writes my prescription. If things got worse, I would try Dr. Grubb or go back to Mayo. I did find this old post which might be helpful to you: http://dinet.ipbhost.com/index.php?showtopic=617&hl=nj

This really helped me in the hospital a couple of times. I think when we're having a POTS attack, not enough blood is getting to the brain, and blood carries oxygen to the brain. This is also why people have trouble at higher altitudes - b/c the air is thinner. My friend (non-POTS) who had altitude sickenss in Colorado hung out in the oxygen room at her hotel and it helped. I have always wondered why it isn't used more often for POTS.

In the past, my worst problem was dizziness. I could barely walk for a year because I felt so dizzy. Now it's fatigue. There is only so much I can do during the day and, if I go beyond that, I wind up feeling tired and having headaches/nausea. When I get one of those episodes, I have to lie in bed for a day or even for a few days. I'm not sure fatigue is really the right word to describe it - it's more like limited energy and exercise/activity intolerance.

It seems she just joined the forum 3 days ago, with only 14 total posts. And all but one of her posts seem to be in this thread...so it seems unclear, and I am hoping she is just expressing her opinion...

Melissa, Thanks for letting us know. I hope the new treatment will be helpful. Thinking of you -- please keep us posted when you can. -Rita

Morgan, I don't have any advice, but hope you find a way to stop the weightloss. -Rita

One of my childhood friends always had excessive sweating. She finally got it checked out and it turned out to be an endocrine condition. I'm not really sure of the name of it, but it might be hyperhydrosis. You may want to see an endocrinologist if you haven't already.

That's great Jan. I've had the shoes for a few months and I really think they help me too. I have been trying to exercise often too, so it's hard to pinpoint exactly what is helping. My POTS seems to keep improving, although I am post-viral and it was alread improving before I had the shoes. But I think that I can walk longer and feel less tired when I wear the shoes. I didn't realize they were coming out with new styles, and look forward to seeing what they come out with!

I'll be there. If it wasn't August I'd suggest meeting in a park...but weather probably rules that out! I'm not a morning person, but if the meeting is going to last for a few hours, I might just show up a little late. Martha, I think brunch is a great idea. I'm away for a few weeks, but can help with restaurant ideas when I get back (if we haven't decided by then). -Rita

I just wanted to post an update, because I did go to see my nutritionist last weekend. I was a little disappointed. She really didn't have much to suggest interms of supplements and diet changes. In fact she said she doesn't believe in supplements and things you can get all the nutrition you need directly from food. I have been hesitant about the whole supplement thing in the first place, so I guess it wasn't meant to be. I already eat pretty healthy and don't really eat fast, frozen or processeed foods. The one thing that she noted is that she doesn't think I am getting enough sodium in my diet because of this. I about fell on the floor when she told me that. I think the whole/healthy food diet is good for regular people, but it might not be the best when you have POTS. She gave me some suggestions for ways to increase salt, so at least that part was helpful. I am going to start adding some frozen and packaged foods to my diet.

Count me in. I live in Manhattan and don't have a car, so I'd need to meet somewhere accessible by public transport. Things are pretty busy for me through July 4, but anytime after that would be great. I think there are a few folks in NJ too, so maybe they can join...

Hi Gena, I just saw your post and wanted to say that I am pretty much in exactly in the same situation. I can go to work and I generally feel OK, but when things are stressful, my POTS symptoms really flare up. I can still make it to work and function enough to do the job, but not my at best. But these times are really miserable and each time I really wonder why I am doing anymore. When I first got POTS, working was a lot harder, but it is actually getting easier to deal with over time. I have been trying for the past year to something a little less stressful, but it's not so easy finding the time/energy to search for a job. I don't really have any advice, but just wanted to say me too! -Rita

I think we get dehydrated too. Extra water, salt and cooling vest help me, but what really helps is staying inside!

I agree with hmichel. My HR is pretty much all over the place. It isn't much better now than when I first got POTS, but I feel better and can do a lot more. Then there are also the days when I feel awful and my HR is "normal." No rules here, I guess...

I am pretty sure I don't have EDS, but I look very young for my age too. I still get carded and I am in my early 30s! I wonder if whatever hormones/genes are causing us to look so young also cause POTS?

I am definitely an A type too, but pacing myself has been the key to getting better for me. At first I tried to overdo it, but then I realized that I would rather have seven OK days a week than have one day when I do a lot and then several days when I'm unable to be productive. I can get a lot more done and am happier overall if I keep myself out of the POTS holes. I think it helps to keep a journal of your activities to find what triggers your POTS symptoms. When I overdo it, ususally I feel fine that day, and then a couple of days later I find myself in the POTS hole. So it is really easy for things to sneak up on you and it helps to avoid the triggers. In terms of exercise, I think what helps POTS in the long run is not necessarily exercising hard, but more exercising regularly. For me the trick has been finding the highest level of exercise which won't trigger my POTS at all. I started out only being able to ride the bike for 2 minutes - now I can do it for 1/2 hr w/ only a small increase in symptoms. I did this by increasing 5 minutes every couple of weeks. I know this is the slow and boring way to go, but it has really worked for me. Although I can ride the bike now, I still find that cardio takes its toll on me more than other forms of exercise. I really like pilates and core-strengthening, because they are effective, yet gentle and don't tire you out. Good luck, Rita

Just wanted to let you all know that I finally got copies of two articles written by Dr. Grubb and others on biofeedback. I called up the journal in which they were published and they mailed them to me! I am so happy about this, b/c now I can try to find a biofeedback practicioner who is willing to read the articles and work with me. If you'd like copies of the articles send me a PM and I will email them to you. -Rita

Michelle, I had an upper endoscopy about 5 days before getting my first POTS symptoms. I'd had a virus a few weeks earlier and threw up blood, which is why I had the endoscopy. I think the dehydration from the virus, combined with the anesthesia from the endoscopy, did not help things any for me. It seems like other people here have done OK when they have been put under - at least you will be prepared (unlike me)! The docs can probably work with you in terms of monitoring your HR and BP and giving you IV fluids -- those always seem to make me feel better! -Rita

There was a story on this last night on 60 minutes. HGH has been approved for only a few indications and they said it was actually illegal to use it for a non-approved use. The side effects haven't been tested and could include accelerated growth of cancers. After watching the story, it didn't seem like anything I wanted to try anytime soon! If you're just starting out in the POTS world, there are tons of drugs and other treatments out there that you can try that have helped lots of POTS patients and are safe (relatively, at least). In terms of building up strength, I think the best way to do this is through exercise. -Rita

Hi Lauren, I agree with Laura - it totally helps to have people checking in on you during the day. That way, if you don't answer the phone in time, they can call for help. I remember that I used to be really scared taking the bus by myself to work, so I would call up friends or my mom and talk to them the whole time. That really helped -- both to ease my fears and to take my mind off of my POTS. Maybe you could use the same idea if you are getting up to go to the kitchen or bathroom - just have somone on the phone with you, so if you do faint, they will know right away. In time, I got to know my limits better and hopefully the same will happen for you. -Rita

I take Iron Free Ultra Freeda. It is good b/c it doesn't upset my stomach. The only annoying part is that you have to take it 3x/day. I think that's supposed to help you absorb better, but it's a pain!

I was told I would get completely better in 6 months to a year. It's now two years, and I am a lot better, though far from cured. I don't think I can complain too much if things continue in this direction. I think the outcome is really depends upon personal circumstances. I also think there are a lot of POTS patients that aren't on the forum or don't know about it, so it's really hard to know what the true long-term prognosis numbers are. It seems like the forum would attract people with more severe cases - we are the ones that have POTS on our mind the most and have time to post.

Actually, I see the names of some articles on Pubmed, but can't find a way to access the articles. Does anyone have copies of these? 1: McGrady AV, Kern-Buell C, Bush E, Devonshire R, Claggett AL, Grubb BP. Related Articles, Links Biofeedback-assisted relaxation therapy in neurocardiogenic syncope: a pilot study. Appl Psychophysiol Biofeedback. 2003 Sep;28(3):183-92. PMID: 12964450 [PubMed - indexed for MEDLINE] 2: Boehm KE, Morris EJ, Kip KT, Karas B, Grubb BP. Related Articles, Links Diagnosis and management of neurally mediated syncope and related conditions in adolescents. J Adolesc Health. 2001 Jan;28(1):2-9. Review. No abstract available. PMID: 11137899 [PubMed - indexed for MEDLINE] 3: McGrady AV, Bush EG, Grubb BP. Related Articles, Links Outcome of biofeedback-assisted relaxation for neurocardiogenic syncope and headache: a clinical replication series. Appl Psychophysiol Biofeedback. 1997 Mar;22(1):63-72. PMID: 9287256 [PubMed - indexed for MEDLINE]

I had this same question - here is a link to the old post. According to one of the old DINET newsletters, there is a series of articles by Dr. Grubb on this, which I was never able to find. I would LOVE to find them and get biofeedback treatment. http://dinet.ipbhost.com/index.php?showtop...&hl=biofeedback

Hi Pooh, I've seen a few neurologists and the only ones that seemed to know about POTS are ones that specialize in the autonmic nervous system, like Dr. Low at Mayo. I think part of our problem is that POTS affects more than one system of the body, and each doctor only knows about his or her speciality. There are very few docs that want to take responsibility for complicated cases like ours, and everyone tries to say that it falls within someone else's speciality. Someday they will come up with an integrated approach to dealing with all of our problems. I also think that if you have been diagnosed with POTS, it might be easy to miss a second condition that you have, because so many symptoms can fall under the umbrella of POTS. If your case doesn't seem typical or your symptoms seem more severe than most, I think it makes sense to keep looking for answers. I don't think you're wrong to question your doctors -- I think this is the smart thing to do. The diagnoses they give us are limited to what they know, and they are not so good at figuring out things that fall outside of the box. -Rita