yogini

Sometimes it makes me feel more alert and gives me more energt. Other times it gives me tachycarda and insomnia. I haven't noticed any effect on hands, feet, etc.

It could either the be the lopressor or the SSRI or both that are contributing to the weight gain. Personally. I was on beta blockers for years and switched to Paxil within the last year. have maybe gained a lb or 2 - maybe not - but feel soo much better that I don't care whether I'd gain weight or not. It would be worth gaining 50lbs it is such a difference for me. That being said, there are many treatments for POTS and you don't HAVE to take anything. You have to balance how you feel with the weight gain and decide for yourself.

That's awesome. Go sis! Who knows, maybe insurance will even reimburse her after the fact. Let us know how your surgery goes.

I live in NYC, where there are some of leading neurologists in the country. It is always good to see smart drs who take their time with you, but I have found drs who specialize in POTS to be most helpful in my treatment. Have you tried any of the more traditional therapies for POTS? I would go for beta blockers, midodrine, etc. before trying IVIG or antibiotics.

You may be right about the blood flow, Flop. But canned oxygen does help me feel better. In any case, I am glad I can return my concentrator!!!

Thanks, guys. I use a biofeedback machine called Resperate, which helps me to take deep breaths. I use it almost every morning, and I feel immediately better after using it. I thought the oxygen would make me feel even better. I know I had oxygen in the hospital and it helped. I got a good deal on a concentrator from a local store. I've tried it over the past few days and haven't noticed anything different. I have 2 weeks period to return it, and that's what I will probably do. My machine only increases oxygen by 30%, which is not much of a difference. I'm going to save up and in the future think about getting an concentrator that puts out a higher % of oxygen.

This question is hard to answer. When I first got sick, my complexion turned sort of grayish. I think if someone just met me, they might not have known I was sick. But when I started to feel better, some people I know told me I looked much better and that my face had regained itscolor. Others didn't notice. I also gained about 10 lbs and have lost some of it.

I think even the people who we think understand don't, unless they are chronically ill themselves. I have to admit that before I got POTS, I didn't really understand chronic illness at all. I had a couple of friends in high school that were chronically ill, and I wondered why they didn't get better already and make it back to class. Looking back, I feel awful about thinking those thoughts. But at least I knew enough not to say anything to them about it. Some people don't - they are just rude!!

I saw one of my drs a couple of weeks ago and she told me to follow up with a particular specialist. I needed to get her some old test results, which I faxed her. I also called the specialist and found out he doesn't accept insurance. I can pay and get reimbursed in part by my insurance. She told me this might happen and to call her so she can work out a lower fee with the specialist for me. I have called her three times in the past 10 days, but haven't heard back. I understand drs are busy and might not be able to get back to us right away, but I think 10 days is a bit much. Is it just me?

Following up on the earlier post on hyperbaric oxygen, I was wondering whether anyone here has tried an oxygen concentrator, such as one of these? They are expensive, but I was thinking of giving one of them (one of the cheaper ones) a try. I have benefitted a lot from Resperate machine - just from taking deep breaths of regular air, sif I do this at the beginning of a day, my POTS symptoms are better all day. So I am wondering whether oxygen would help me. I also bought oxygen in a can for about $15 from my local drugstore and use it occasionally. It does seem to calm down my POTS symptoms a little, but it doesn't feel like enough. So I am considering a concentrator. I am looking at the recreational ones: http://www.amazon.com/Zadro-Tranquil-Sound...9981&sr=8-8 http://www.amazon.com/Dr-Oxygen-Portable-O.../ref=pd_sbs_a_4 http://www.amazon.com/O2-Innovations-Porta.../ref=pd_sbs_a_2

I am on facebook too and would love to friend all of you. I wonder if we can start a Facebook group for Dinet - not for fundraising, etc. but for a way for all of us to just be in touch with each other.

I know there have been studies about POTS in Japan and members from around the world. I would guess that all races are affected by it.

I have read very similar posts about other conditions that seem to coincide with POTS, such as Lyme disease. I do think, more than anything, that the medical community relies too much on conventional testing, which may not be enough in our cases. Not all POTS patients have undiagnosed thyroid issues and I would venture to guess that most don't. But there may be some that do. This is a good area to think about or investigate, especially if you have other unexplained symptoms, or aren't improving or responding to treatments.

I'm not sure that pain is a part of POTS itself, but it is common with other conditions that POTS people often have - you may want to read old posts on EDS, fibromyalgia, Lyme disease - I am sure there are others too.

Sorry about your ordeal. It doesn't sound like fun...but SO glad you are better!

Oh -- I'm so sorry to hear it. I hope she feels better soon. Please keep us updated.

Hi - I am actually not on Atenolol anymore. I started Paxil about a year ago, and slowly weaned off my atenolol. Atenolol worked well for me, but I like the Paxil much better because it doesn't tire me out. Maybe there is a drug out there that's better for you than atenolol...

Atenolol and beta blockers have been around for years and are widely regarded as safe for their intended use. All meds have some risks, and BBs are actually not so bad compared to other drugs prescribed for POTS. I haven't heard of the website you used to do your reearch, but there are always docs that disagree with the main medical community. I think whether you should keep taking them depends on what's going on with your individual body. You are taking a super low dose, by the way. You may stlil want to check with your doctor and/or pharmacist.

I can work. I was out on disability for a few months when I first got sick. I took a self-imposed leave of absence for a while, but now am back at work full time. It's much easier on my body when I don't work, but I am managing OK. I really enjoy my job. But, if I had the choice, I might stop working or do something part-time.

I have been on the forum for 4+ years, and have seen lots of people come and go. I think a good number of people do feel better. I can work. I have a very stressful job. I was really wearing myself down to go to work. I took about a year and a half off of work, in part to "recover" from POTS. I'm now feeling better than ever and back to working about 40/50 hrs a week and holding up OK. My POTS came on spontaneously. I still have POTS symptoms, take meds and eep in the back of my mind that I can relapse - and I did have a very big relapse a couple of years ago. I think a big part of my journey has been learning to let go of what was, and what may be, and just live in the moment.

I think there have been a few people on here that have been on daily IV fluids. I think it helps some, but more poeple don't do to the high cost and chance of infection.

I think exercise increases BV mildly, not enough to help if you have really low BV related to your POTS. There are all kind of other theoretical benefits too, like having your mucles stronger to pump blood better. I think exercise helps many people here (myself included). Sometimes you have to try a bunch of different things before you figure out what works for you. You may be pushing too hard. I personally don't think it is worth killing yourself. There are a good number of people out there that exercise does't seem to help at all. You just have to figure out what's right for you.

Eating triggers bowel movements by waking up the digestive system. I think this is maybe called peristalsis - I've forgotten the name. The waste that is coming out is probably not what you just ate, but something from an earlier meal.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? When I first got sick, I had very visible pooling in my arms and even moreso in my legs. Now I can see it rarely. But I think my answer to this question is no 2. Have you ever been diagnosed with EDS or suspect that you may have it? No 3. Do you experience symptoms when lying down even after a night of sleep in your bed? I used to be a much slower starter. Now not so much. From what I have read, it is not uncommon for POTS patients to feel worst in the morning. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? I don't think I have hyperandrenergic POTS, but I haven't looked into it. 5. Have you ever been informed by a doctor that you have low blood volume? No. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Just chronic reflux. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? My hands and feet are always cold, but I think this is due to poor circulation, not vasoconstriction, in my case. 8. Did your POTS arrive suddenly? Yes. 9. Is your skin pale? No 10. Please the top 6 worst symptoms that you experience with POTS: Fatique, exercise intolerance, dizziness

I push myself hard only for very special occasions. I think progress depends on gently pushing yourself and I've improved slowly by increasing my activity slowly over time. But we're only human and sometimes we get carried away or lose track of things and go overboard.