yogini

POTS is an increase in HR of 30 bpm ormore. Your BP could stay the same or even go up and you would still have POTS with the HR increase... The other thing with POTS is that your symptoms come and go, so on some days your HR might not even increase. It's frustrating that your doc doesn't get this...

You should find out what kind of health insurance you will have through the school. Then you can figure out if the visit would be covered by the insurance or if you would have to pay out of pocket for the visit.

By the way, I think it's clear from the video that at least the brother has dysautonomia...he explains it in a way that only someone who has it can.,.

There may have been substances contributing to her extreme weightloss as well...who knows! It is all a jumble and I think any way that your body is extremely weak makes you more vulnerable to things like pneumonia and death. We all need to take extra care of ourselves.

I agree with the other posters. I don't want to get into details or offend anyone, but Brittany Murphy may have had some other issues going on her life not related to POTS. She may or may not have had dysautonomia too - I don't know. Unfortunately, it's hard to tell what is going on behind the scenes with some of these politicians, celebrities, etc. Regardless of what is true, Brittany's story is being portrayed by the media as not very credible and I wish dysautonomia wasn't in the picture because I want people to take it seriously... I think some forms of dysautonomia can be life-threatening, but generally not POTS. I think the people who have life threatening forms have plenty of notice and go into serious decline before their condition becomes life-threatening.

Actually POTS makes your legs turn purple. That's pooling. Many people sit down. Some people get a shower chair. I can now stand, but I used to just sit on the floor of my tub. I have one of those massage showerheads that you can hold in your hand. It also helps to take showers with water that isn't too hot. I hate showering at night but I did that for a few years b/c I would get so tired after showering. Now I mostly take them in the morning/during the day.

I would ask your dr, but I think target HR is based upon age and gender. You can give yourself a little wiggle room based upon what your starting HR is. My POTS is not that bad but for some reason, cardio just gets my HR going and it doesn't come down. It can ruin the rest of my day or even go on for a few days after. So for me, other types of exercise works better. I would say, though, that if your HR calms down and you get back to feeling "normal" after the exercise, then you're probably safe. Push yourself gently and see what happens.

That's a pretty cool chart. It does sound like you have POTS. It's amazing that you found our website all the way from Sweden. If there aren't any POTS specialists in your country, mabye an electrophysiologist (cardiologist who specializes in heart rhythms) can help? There are lots of people here from Europe, so maybe they can help you find someone nearby.

Ouch...get well soon!

Have you tried temping or consulting? I took a leave from my job and when I came back they no longer needed me bc of the economy. In my field it is unheard of to take time off and I was petrified. I took a temp job at a huge pay cut. The job was supposed to last three weeks and it has lasted a year. I also got a raise and a bonus to make upfor back pay. It has also led to other work I am doing at the same time. It is also exactly the type of work I was looking for years when I was in my old job. And I get to work from home, which is great for my pots. My good friend who is in a totallly different field was out of work for 4 yes mostly bc she was in a funk. She started doing random consulting and one job led to the next led to a perm job in her field. She is even making more money than ever - I am not!! I think it helps to get out there and meet new people and tell them you are looking. They will introduce you and refer you to other people. That can be more effective than sending in random applications tho of course you have to do that too. And don't be too hard on yourself. I don't know how long you have been looking, but it can take many months or longer. Good luck.

Actually, I find it really easy to live here. You don't have to drive anywhere - you can take the bus, or a cab or the subway - I know where the elevators/escalators are in all of the subways. You can also find someone cheap to clean your apartment, and get food or groceries delivered for free at any hour! And there are lots of options for doctors and hospitals. The only downside for me is the noise. I can't imagine being able to manage my POTS anywhere else. I've lived here for years, though, so I knew the system before I got sick. It'd be much harder for someone new. It's funny - I am working with a company in Utah and may have to travel there someday...I am trying to get out of it b/c I am scared of the elevation.

I feel your frustration. There is not an excuse for the lame response. I would not worry too much about hyper POTS vs regular POTS. The treament is not really different for either. As for MCAD, it is better to go to an MCAD specialist for proper diagnosis and trmt. If you want to try to keep working with this doctor's office and they are not communicating well by phone, the best thing to do is make another appointment. Someone the other day posted about finding the "perfect doctor." Many people here are looking for the perfect dr - and we are sick, who can blame us - but I am not sure there is any such thing. There is so much hope when one gest an appointment with a doctor, Vanderbilt, Mayo etc. that it is very easy to be let down - especially because treatment is trial and error and so it takes a long time to get to the right combo. These POTS experts are also not equipped to provide ongoing care and work out every minute detail with us, which is what we all really need. I hope you get the care you need and deserve.

Thanks Elfie. I was excited about the first potential person because we had a lot in common. After that it seemed more casting of a wide net. I agree with you about getting out there. Pre-POTS I always dated people through school, work or meeting while I am out with friends. I've tried to branch out to other options since becoming ill. They can be hit or miss but you're right that it is better than nothing! It is fun to get dressed up and get taken out on a date, even if he is a dud.

Thanks for the encouragement! This is is a particulary tough time for me, because I am weaning off Paxil. I have been doing this slowly since Oct without much trouble. But in the past few weeks my symptoms havce flared up. But I am almost off of it - have only a month more to go - and want to stick with it to see what happens. Worst comes to worse, I will go back to the dose I had in January at which point I was fine. I also have big work deadlines in March/April. You are right that there will always be something going on, with POTS or otherwise. I think I manage my illness by not having too many variables at once, and I am terribly frightened to lose control. But if I don't let go a little I will never be able to change my life for the better. I am on a dating website and get some dates sometimes, though I would get more if I spent more time checking the site. Since getting POTS I have also dated a few people for short periods of time either through the site or that I have met through friends. I am trying to get out there more socially just spending time with friends - have been doing this more and more in recent months and it feels great. There is also a nice, smart, cute, single guy at work who is just my age. I think he may be somewhat interested, but I will probably have to make the move. Which I will do when things calm down slightly. Kits, where are you? You should move to NY. There are single guys of all ages at least compared to the rest of the country (they are noncommital, though)...I could even introduce you to my set up friend! :0

I am single and would love to be in a relationship. I am more ready now than I have been since becoming ill. Somone I know offered to set me up on a blind date. The original date sounded like he had a lot in common with me and I was excited about it, but that person never called. I'm also in the process of weaning off my medication and have not been feeling at my best. This is also the busy season for me at work and in my spare time I want to do yoga and see my friends. My apartment is a mess and it's not like I could even bring a date home. I feel overwhelmed and the last thing I want to do right now is go out on a date. But the person who tried to set me up has started bugging me about being single and, without my knowing, went and contacted some friends to see if there was anyone else for me to be set up with. After the first time I found out about this, I told him to please wait. Then he forwarded to me an email that he sent to yet another person about me. I don't want to offend the person who offered to set me up or miss out on opportunities to meet people. I can use all of the help I can get. What should I do? I hope this post doesn't belong on the chit chat forum.

Hi Janey, I am glad you got such thorough testing. Maybe when you are sleeping, blood distributes more evenly. Then when you get up, gravity pulls it down and by the end of the day, you are feeling awful. It's interesting that your gastro symptoms don't start to feel bad until midday. I am wondering if it's what you are eating or maybe it's because that's when food starts to enter your stomach? I have cut back on my medication which helps my BP and definitely feel worse after lunch. I think there maybe isn't enough blood pressure (blood volume) to provide adequate blood supply to both my head and stomach at the same time...if that makes any sense. Still my gastro symptoms aren't too bad. Many people on the forum have been helped by making dietary changes - eating smaller meals and cutting out certain foods like dairy and gluten - so those are all things to think about. I hope the doc gives you ideas/meds on how to help with BP/pooling and that you feel better soon. Let us know what he says...

Hi, You may want to ask your doc why he gave you zyrtec. It isn't usually taken for POTS/dysautonomia - though some people here take it for other conditions. I am glad you are no longer scared about the BP. It is normal to have some high BP readings even for people without POTS. One bad reading could even be a misreading or be aggravated by your being scared. Having that kind of BP as your baseline is more of a problem, but usually even then it takes a while before you would have a heart attack, stroke, etc. - people with high BP like smokers and overweight people don't have heart attacks for years. If so you would have to take beta blockers (or some other medicine) every day - rather than taking it in response to a high reading. My guess is that if you had high baseline BP, a small dose of beta blocker would not have brought your BP back down so low. So talk to your dr, but don't worry!

You have to figure out what's right for you. I personally feel comfortable doing stuff on my own without checking with my dr - something like caffeine isn't a prescription and if it makes you feel better, just go for it! Honestly you may not even want to bother explaining to him. Especally because so many of us use caffeine and it's in all of hte literature too! If you couldn't tolerate it, you would know by now. I've gone back and forth with caffeine - cutting it out and using it. For me it also works best in moderation. in the morning so it is out of my system when I try to sleep. Like the others said, your doctor may not fully understand POTS. You have to think about whether this is the best doc in your area (which, given the docs out there, he may be!) or whether there is somoene more knowledgeable around. If you stick with him, keep doing your own research and checking things that don't sound right. If you do want to explain, rather than an email make an appointment in person. He may have said something to his receptionist without thinking too much about it. It's sad but true tht he will be more focused on you when he is getting paid for it. You could print out some stuff from Dinet which says caffeine is helpful to some POTS patients.

I am so glad your doc took you seriously. Hope you are getting good care and lots of tests to figure things out. Maybe they can call Mayo or something for guidance. Keep us posted.

I TOTALLY understand. It's like when my friends whine to me about having a cold..."I'm SOOOO sick". Try being sick every day for 6 years...they don't understand what sick is!!! Being stressed out about appearance is superficial and a luxury that few people in the world have. If the biggest thing you are stressing about is the whiteness of your teeth, God bless! I hate being sick, but it has opened my eyes that when you have REAL problems, lifes little ups and downs don't matter so much anymore. When people complain about having to work late, I think I am so grateful to be able to work...and if I work late and I am feeling OK, then I am walking on air!!! It's all relative, though. There are millions of people whose lives are worse than ours....women in Africa who are being raped and brutalized every day or even the Haiti earthquake victims. POTS does not seem so bad in comparison.

Great, we can compare notes. My appoint is for Fri, but I may have to reschedule for next week...

I have had POTS for 6 yrs, by the way. I know a couple of years (or a even couple of months) seems like an eternity, but unfortunately it isn't in the POTS world. I would say the first year was the hardest, and after that things steadily improved apart from a couple of glitches in the road. But as tearose's post shows, you can have a good and meaningful life even if you don't improve. There was the article in the last newsletter about the stages of chronic illness, which I thought was so great. I think the hardest thing to get to the point where you accept the POTS, are not so troubled by the ups and downs, and start figuring out what you CAN do to be happy.

Have any of you tried acupuncture for sleep? I had the chance to test out acupuncture a couple of weeks ago for really cheap. I only had 20 min, but it left me feeling really relaxed and drowsy. It didn't really help me sleep in the end, but I feel like it would if I could do it longer. My friend who used acu for her back pain said she would sleep for hrs, which sounds heavenly. It didn't seem to worsen my Other Pots symptoms either. I found an acu school near me, and I am going to try 1 hr treatments for a few weeks to see how it goes. Insomnia is probably one of my worst symptoms these days and would love to find anything that helps. I use ambien to break the cycle, but it would be great to have a regular sleep schedule!

I am tons beter than I used to be and am in the process of weaning off my last med. I have tried a million different things to to get here. I changed around practically everything in my life - left a high stress, job, took up yoga, improved my eating habits, tried different meds and kept pushing myself. Some things worked better than others, but eventually I found the right combination - the best thing for me was starting yoga, then Paxil. After the Paxil I was finally able to stop my beta blocker which was making me exhausted. Then I was able to build on my physical strength and activity level. I think my POTS was predisposed to getting better, but I think the recovery could have taken much, much longer if it wasn't for the hard work So hang in there, keep trying!

I don't know about your other conditions. Your symptoms do sound like they could be from POTS. What is your BP number - is more like 90/60 or 120/80? Is it dropping when standing? During the worst periods, the things that help me most are rest, compression, staying off my feet and fluid and salt loading like crazy. It takes a few days for the fluids/salt to kick in. It could even been something as stupid as the weather which is causing a flare up. I hope you feel better soon.