yogini

Thanks so much for all of your responses. You always help to reassure me and make me better. Luckily I don't have a virus and I'm feeling much better...not quite back to my baseline, but at least up to walking around and (unfortunately) going back to work! What happened is that I tried to wean of the last of my atenolol (I have only been taking 6mg or 1/4 pill for the last 2 months). You would think that such a tiny amount of medicine would not make such a difference. I did fine for several days and then it caught up with me. I haven't felt that bad in ages, but at least it was short-lived. I just got back from the dr's office. He said he thinks I need the atenolol, but that I should try again in January. I am disappointed, but also relieved that I don't have to think about this again for another 4 months. My dr did say that some of his other patients take small amounts of betas like me - I wonder whether I could have gotten away with a much lower dose to start off with, and whether a smaller dose might work for others with POTS who can't tolerate the normal dose.

Glad you found a good doctor and hope it brings you much relief!

I'm not familiar with CBT -- is it different than regular therapy? I've been working with a therapist (psychologist) for about a year now, and it has made a big difference. There are times when I feel OK and I almost feel like I no longer need the therapy, but then something always comes up! It's a comfort to have an impartial person to talk to, who understands and whose job it is to listen. I agree with Morgan -- I can't imagine dealing with this condition w/o therapy. Pers, I'm glad you've found something that's helping you.

I haven't posted in a while and things were going pretty smoothly for me until last night. I woke up in the middle of the night burning hot, drenched in sweat. I was semi-delusional and it took me a while to figure out that I needed to check my pulse. When I checked it, it was 130 lying down. I took some extra beta blocker and it went away. I managed to fall asleep and when I woke up this morning, I was burning hot and drenched in sweat again. This time I had a mild fever - I didn't have one in the middle of the night. I feel exhausted and, needless to say, am not going into work today. It's been a while since I've had an episode like this. I At least the tachy seems to be under control right now and I'm also lucky that this happened to me at home, instead of at work or outside on the street. I had almost forgotten what it was like to have a bad POTS attack - and now I remember, it *****!! I'm so dissapointed and upset, because I feel like I'd made so much progress and this is a step back. My doctor doesn't have any openings today, so I am just trying to hang on until tomorrow. I am going to try and catch up on old posts. Hope too many of you aren't with me in the POTS hole.

I always notice when my pulse is off, even a little. Usually it's in the 70s/80s sitting down, and I can feel when it goes to the 90s/100s. Something just doesn't feel right - I feel dizzy, wird, tired all at the same time. And when I walk, it goes up even further. I still can usually tolerate that, but if it gets any worse, I just take some BB and it goes away. I don't think I could handle a seated HR of 160 - I would be headed to the dr or the ER at that point. I guess each of us is different...

Hi Lauren, I'm glad you're feeling up to exercising these days! Just wanted to say me too - I definitely had this symptom. I still get it sometimes (rarely) - but it has improved a lot over time. Mine used to last a couple of hrs. A few times it lasted for a day or two, which meant I was exercising too hard. Cooling down does help a lot, but if you're starting out by walking there's not much you can do to cool down - LOL! -Rita

Thanks to all of you for your responses. I definitely feel better knowing I'm not the only one. The funny thing is that, of course, my low grade fever seemed to calm down on Friday when I went to my doctor. He didn't find anything, but did order blood tests. I will post an update after I have the tests -- though I am sure they will come back normal! I did review the Lyme website, but it just seems overwhelming right now. I may try to see an LLMD some the fall.

Steph, It is so frustrating when insurance gets in the way of what we need. Glad it worked out!' -Rita

Hi Jennifer, I take atenolol and am in the process of weaning off. I was told 1/2 pill every other day for one week, then 1/2 pill every two days for a week, then 1/2 pill every 3 days, then stop. After the first week, my HR and BP were normal. but I felt like a complete zombie, so I decided to stay there instead of reducing further. The zombie feeling is now gone, but I'll try again in another few weeks to go all the way. If you have any doubts with the dr, the pharmacist might also be able to help. Let us know how it goes. -Rita

The worst symptoms took a week for me to adjust to. But the symptoms slowly kept going down, and after a year they were hardly noticable. I take atenolol. so I don't know about Lopressor. 50mg seems like a high dose to start off on. Is that the lowest dose you can take?

Since getting POTS, I've been getting low grade fevers from time to time. This especially happens to me in he afternoons. Usually my fever would be around 99.5 or below. I've noticed for the past couple of weeks that I have had one every day for most of the day. Over the weekend I had one of 100 which is higher than before (although admittedly not high). And I've just had that BLAH feeling. I know that many of you get low grade fevers. I did a search on the forum and found my own response to someone asking about this a few months ago...LOL. But I am wondering if any has any suggestions or has gotten a better explanation from their doctors? I have had some changes lately which could be contributing - I am weaning off my atenolol and exercising a lot more and also trying to watch what I eat. Not to mention that it is HOT outside. This will probably be chalked up to "just POTS" in the end, or maybe I am just overdoing it. The fact that this is happening every day has me worried enough that I made an appointment with my GP tomorrow. I also know that low grade fever is a symptom of Lyme disease, so I am going to ask him about that -- although I was already tested 2 years ago, am functional and don't have the classic Lyme symptoms such as pain, etc. maybe it is worth further testing. -Rita

I haven't heard of this procedure for anything, let alone dysautonomia. Sounds like you need a second opinion. Are you seeing a POTS specialist?

I'm so glad it worked out--before I had a chance to respond even. Good luck with the treatment and I look forward to hearing your update...

Size 12 is not even a plus size - it is a regular size. My friend was 130 lbs at 5'4" and wore a size 12 b/c all of her weight was around her stomach (like mine). She wasn't close to obese. Of course people have different body types. I'm no doctor, but I think it would be hard to be obese at size 12, unless you are very short. The topic of weight is one that really gets to me. Around the time I got POTS, I was too skinny. When was diagnosed, my doc kep commenting on how "gaunt" I looked. My mom also still keeps commenting on how skinny I looked around that time. I think both of them were insinuating that I was purposely starving myself (which is far from true because I am someone who LOVES to eat). I wasn't trying to lose weight and in fact I went to my GP around then asking why I was losing weight without trying. Well, (duh) now I realize it was because my heart was beating at a million miles a minute. Now I have gained some weight and people keep asking me if I am pregnant. I'm not happy with my weight, but at the same time, POTS has kept me me from being active and exercising as much as I'd like. It takes so much for many of us just to manage our day to day activities - how can we put any energy into managing our weight? Even normal people have trouble doing this. I would think any POTS specialist should understand why POTS can make us either underweight or overweight. If my doc told me to lose weight, I would tell him that I'd lose the weight as soon as he fixes my syptoms so that I can exercise!

I started out on a pedal exerciser - it is not even a bike and you can pedal lying on the floor or sitting. Now I graduated to a recumbent bike. I can do a regular bike too, but the recumbent is a lot easier. I used to wear compression hose while riding to help with the pooling, but I think pedaling and contracting leg muscles gets the blood circulating in my legs.

Hi Dayna, I was exactly in your shoes for a very long time. My symptoms seemed to wax and wane. I saw several cardiologists, neurologists, etc. and none of my doctors seemed to take me seriously - in fact they said I should try to go off my meds. Meanwhile, my day to day life was horrible. I barely did anything, except for go back and forth to work and collapse when I got home. I went to Mayo and I am pretty sure that you need a referral - a doctor needs to submit your paperwork- not only that, but they turn down 80% of the patients that apply there. I was intially rejected, but someone I work with helped me to get an appointment. I saw Dr. Low. I had a bunch of tests, many of which I had already had. I was very glad that I went, because I found him to be very knowledgeable and reassuring. But it did wind up costing me a few thousand dollars out of pocket. Even though I had a referral, it was not covered by insurance. And, in the end, many of the tests were ones I'd had at home and his suggestions were not much different than my local doctors. My POTS is much better now - after several tries, I am weaning off the last of my medicine. I think what has helped the most is time and gentle exercise. I think if it ever got worse, I would try to see Dr. Grubb. From what I've read, he is the best at giving ongoing care. -Rita

It'd be great to have a brand name and/or measurements of the shirt. I like my t-shirts fitted. I usually wear a size S, but sometimes M. I'd buy a couple of more Ms and/or Ls as gifts depending on sizing and what the final design turned out to be.

Yes, from the description, it seems like they are trying to determine whether people with POTS are more or less likely to be able to be hypnotized than regular people. Interesting study.

Yes, I went thru the same thing with rehab, and my symptoms came back. Mine was definitely related to POTS. It used to be my worst symptom, but has gotten a lot better over time.

POTS is a disorder of the nervous system, but the primary symptoms relate to cardiac functions (i.e. HR and BP) I have seen several different cardios and neuros during the time I've been sick, and I will say that as a rule, the cardios seemed to know more about the condition than the neuros. At least they were all familiar with POTS and the basic treatments, whereas the neuros didn't know much, other than Dr. Low and one other autonomic neurologist I saw (who were experts and knew more than the cardios). But the best thing is to find someone who treats lots of POTS patients - someone reccomended by another POTS patient or listed on the DINET list - whether they are a neuro or a cardio. These are the people that would be the most helpful.

I use a Polar with a chest strap. I love it -- it is really useful to monitor especially when you first get POTS. If you read the manual, it says the watch can pick up electrical signals from appliances, etc. That usually explains the strange numbers that show up for me--I know I always read in the 230s when I'm on my laptop! I think the numbers are troublesome if they last several minutes and/or I'm not feeling well.

I agree with Sophia. I wouldn't get an ablation without getting several opinions - and checking with one of the leading drs such as Dr. Low or Grubb.

Hi there. I am sorry you're going through such a tough time, and I can certainly relate. IT is so tough when you're in that place where you don't know where to go. I agree with the others that taking a semester off might not be a bad idea. Also, do you have a good POTS doctor? You mentioned that you take beta blockers and have tried herbs, but there are tons of other prescription meds that help POTS. They are worth trying out. The DINET main page has more info on meds and doctors. In terms of salt making you bloated, I used to be a twig and I have gained 15 lbs since getting POTS. It *****! But I think the extra weight has made me feel better, and if I can function bettter, then it's worth it to me. The good news is that if you got POTS after a virus, you have a good chance of recovery, maybe even total recovery. I think the trick is to get started on the right treatment plan and things can start to get better from there. -Rita

I agree with Lauren. I think with the heart rates you're talking about, it seems like a BB would be pretty important. How long have you been taking the BBs? Because my fatigue and other side effects got a lot better after a year or so of being on them. My only other suggestions are: can you take a bigger dose at night or try another BB which might make you less tired?

jhjd, I'm a lawyer too. Like you I have mild POTS -- it was pretty bad at first, but it has gotten better over time and is pretty tolerable these days. And one of my worst problems has been getting to and from work -- although I live in the city and don't have to drive. Just wanted to say hi b/c it sounds like we have some things in common. Good luck with the parking situation! -Rita