SpinnyC

I'm not sure if I've ever felt exactly what you're describing but definitely similar. There have been several times I've woken up extremely dizzy/woozy with hot, red, flushed skin (not sweaty though). When that happens I am just too dizzy/woozy to fall back to sleep, so I started checking my blood pressure and it's always extremely low during these episodes- 80's /40's even 70's /30's. I was told the P in Pots stood for postural so I shouldn't have any symptoms when lying down... but looks like there are quite a few of us with issues while lying down at night.

My ins wouldn't cover cardiac rehab either. So I was put into cardiac maintenance instead. (A program that people who've finished rehab can go into if they want to stay with supervised exercise.) I haven't seen any difference between the two programs. It's the same hospital with the same staff that the rehab program would have been. They gave be an exercise program and monitored my vitals. I pay a monthly fee, but it's way lower than it would have cost to pay for individual rehab sessions not covered by ins.

So sorry you experienced this. But sounds like you stood up for yourself- so good for you! Although it's just terrible to have do that when you are feeling bad enough to be in the ER. Unfortunately there are some very bad-tempered doctors out there. But there are some really excellent one's too! I know it's hard not to dwell on the bad experiences but I think docs like those deserve the same immediate dismissal from your mind that they gave to your symptoms. Please remember that you know your body better than anyone else- so if you are unsure or concerned about a symptom don't let this experience deter you from seeking care. You might have had a totally different experience with a different doctor. The last time I was in the ER- I was sent by my doctor for a non Pots issue (but of course my Pots was going crazy because my body was under so much stress with this other medical problem). I lucked out with an amazing doctor. He immediately gave me fluids, had me hooked up to monitor my vitals, and was very careful to make sure everything he did wasn't making me any worse. He took some time to do some research on Pots and ask questions about how it manifests for me. Then shift change happened... The next doctor (despite being briefed by the good doc) had no idea what Pots was and didn't care. He was confused by why I was there, and clearly only half grasped what was going on because he thought I'd already had a test done that I hadn't and ordered a medication I have a known allergy to. Despite having crazy vitals show up on their monitors- he saw no reason why Pots should be an interference or consideration. So he took the bulldozer approach to my problem and ultimately dismissed me with some pain meds, a "I don't know, all tests are normal" non-diagnosis, feeling worse off than I was when I walked into the hospital. Turns out, during all his careful and considerate treatment of me he missed or misread the abnormal test results that clearly showed a problem. It was later caught by my GP who thankfully, actually took the time to read the test results not just the this doc's summation. Sadly it just seems like a roll of the dice whether or not you'll get a good ER experience.

I'm pretty sure I experience what you are describing. For the longest time I kept trying to explain it as a little trail or if I moved my head it seemed as though things lagged behind. Generally out of sink. But nobody got it.

I don't think you'll find to many people here who are fans of the TTT , but it doesn't hurt and it can really help your doctor determine what's going on. I can understand why you'd feel scared- when you don't stand that long it seems like an impossible task. That's how I felt- I can't stand for that long on my own so the idea seemed horrible. It was uncomfortable and unsettling to feel symptomatic for that long but i just tried to remember that if doctors never saw my symptoms, they couldn't ever help me. I've had several TTT now. They were all run different ways. The first one I had was the worst. I was nervous about it, which probably made the experience much worse. It was also the only one where I was given a drug to try and force my system into fainting (I didn't). I'm not going to lie- I hope I never have to do that again because the medicine drove my heart rate up high- but that part only lasted a few minutes and I was surrounded by a doctor and medical staff. The second and third were done with no medication. I felt cruddy during/after both of them, but they were the best in terms of diagnosis and getting treatment. I didn't faint for those either, you don't have to faint have a Pots diagnosis. And actually none of my TTT happened on days when my symptoms were at their worst. I think on those days there's a good chance I would have fainted being upright that long, but it might have been better for me if I had because my doctors could have seen me at my worst first-hand. I did the entire 45 minutes all three times, but sometimes as others have said they stop sooner depending on what was happening. If you faint they will lay you down immediately regardless of time. And if you do faint, it's probably the safest place you could. You are strapped onto a table and aren't at a full 90 degree angle so you won't get hurt... you'd probably just feel the usual post-faint miserableness. Just make sure you have someone with you to drive afterwards. I needed to rest after all of them.

I get the flu shot every year. I can't describe how awful the flu and pots were together... I ended up in the hospital both times. So anything I can do to prevent that from happening I'll do. It doesn't always work (when I had it the worst I'd actually had the flu shot, they just guessed wrong on the strains that year) but I figure it's still a better bet to get the shot.

Sorry your son is sick! It's really horrible to be sick on top of sick. I'm not sure I have any special tips for you- but I can tell you what my experiences being sick have been like. I don't know if Tamiflu makes POTS symptoms worse- but I sure know that having the flu itself does! My symptoms were so awful when I had the flu I ended up being admitted into the hospital and kept on IV fluids for a few days until my vitals were more controlled. Generally speaking my POTS symptoms get significantly worse whenever I'm sick. and because of that everything seems to hit me harder than it hits the people around me who've caught the same thing. Whenever I've been sick, just sitting my heart rate will be in the 120-150 bpm range. And I don't know why, but even if I'm not loosing excessive fluid to being sick it's still seems impossible to stay hydrated enough. Every time I've had anything more than a very minor cold (even including strep throat) I've ended up in the ER with a very high HR needing fluids. The IV will usually make me feel significantly better for a little while. Because it's such a pain to go to the ER I used to wait too long before going. Plus, it seemed silly to go for something that had the rest of the people in my house sick and miserable but not in need of the hospital. But waiting until I felt beyond horrible to go would end up making me much worse in the long run than if I'd gone earlier. So now I've learned to accept that my body doesn't handle things the same way as other people's might and go if I feel I need to. I just keep a close eye on my vitals, pay attention to how I feel, and get over to the ER at the first signs of needing extra fluids. After that it's just down to resting and not expecting to go right back to the physical level I was at before being sick. It usually takes me a long time to slowly get myself back to where I was before. Hope your son feels better soon!

I've been in a cardiac program at a hospital for a few years. Most places seem to have "Rehab" and "Maintenance" programs. Rehab is typically for immediately after a cardiac event or surgery, and only last for a prescribed amount of time. Maintenance is for ongoing exercise typically after you complete rehab (sort of like a gym but with medical staff). My doc initially prescribed rehab but insurance wouldn't cover it so I just went straight to the maintenance program which is self pay. The program has been great. Initially they helped me to not overdue it. I started very slow and just tried to maintain a balance of not getting deconditioned while also not getting to the point of falling on the ground . I was unmedicated when I started- so really it just helped me maintain the level I was and not add deconditioning on top of Pots. Once I was on medication I was able to increase my activity level a little bit more. I haven't been doing on a prescribed Pots program, I've just been doing what I can and following the suggestions of the staff. I've had lots of ups and downs in my symptoms and ability level since I've been in the program. So it's been great to have professionals who can monitor my symptoms and adjust my activity level accordingly. It hasn't cured my Pots my any means- but I feel certain it's helped. Especially after I've had some random cold or virus that's made my pots flare up. Just a week or two with a normal cold sends me back to the beginning in my exercise tolerance- and it takes months to work my way back up. I don't think I could keep climbing back up to my previous exercise level if it wasn't in a cardiac exercise program. Hope it works out for you!

Welcome Tracey, Sorry you are feeling so bad, but glad you seem to be on the right track to getting answers. It's so frustrating to run around (or be passed around) from doctor to doctor. But it sounds like it might get better since you are finally going to see someone who is actually an autonomic specialist- so that's good. After I was first diagnosed I was so frustrated, and shocked at how easily I could have been given the right diagnosis. If one of the dozens of doctors I'd seen had done something as simple as take my postural vitals I would have avoided years of struggling and fighting with no answers or treatment. And I didn't have the strong family history of diagnosis' that you did- WOW. Hang in there- hopefully feeling worse off your meds in the short-term will get you answers and a plan for treatment going forward.

Yes that crashing feeling happened to me when I first started Midodrine. It's also happened each time I've up'd my dose. But For me, once I get used to the new dose it's not such a hard crash anymore. I can still usually feel it ramping up when I take it and then back down (it starts wearing off around the 3hr mark and I keep feeling worse as I get to 4 hrs- when it feels like it's totally out of my system). Then there are days when it seems like the medication isn't working at all. That crash feeling is awful- like your bp nose diving off a cliff. It's so much better to get the slow come down (which I call it being in the ditch). If I'm having a good day- I time any errands or appointments around the medication to avoid being "in the ditch" in the middle some activity. Keeping up with the med's window of up time can be hard- but it's just nice to have any "up" time at all. One other thing I remember- the last time my dose was up'd I went from two doses a day to three so I was also able to both increase and extend my activity level. The crash when my last dose would wear off was so bad at first, I considered backing off the medication. I talked to my doctor who said to stick with it. I was probably feeling so bad because I just wasn't used to the activity, but my body would eventually get used to it. And that's exactly what happened, so I'm glad I stuck it out. But the thing with Midodrine is, it works great for some people and is horrible for others. And even when it works the dosing seems to really be an individual thing. So if you have any concerns about how your feeling you should talk with your doc. Honestly it was just reassuring to hear from mine that I should try and stick it out on the new dose- cause if it were up to me I would have backed off it and now I'm glad I didn't.

I've been going to a cardiac rehab/maintenance program in a hospital 3x per week for almost two years now. Based on my experience I really think it should be a standard thing doctor's send Pots patients to. It certainly hasn't cured my symptoms (not by a long shot) but I know it's been one of the key things that's helped me manage this as best I can. Before Pots I used to do yoga, but once I got sick I couldn't really do the poses anymore. Even gentle yoga would make me feel awful. When I first started the cardiac program they had me on the heart monitor and would make me slow way down to a level that seemed absurdly slow- not even like exercise at all. But I learned that was where I needed to be in order to tolerate any level of physical activity. And even though my muscles didn't feel like it was exercise my heart was certainly pumping at a level that qualified as exercise! They slowly built my tolerance up. I still go slow, and not very far, but it's better than it used to be- and I'll take any level of progress I can get. The other thing that's been really wonderful about this type of program is that if I'm in a flare they go back to putting me on a heart monitor for a while and reassess my activity level. At one point my flare was so bad they restricted me to only 5 minutes of seated exercise at a time; and slowly built my tolerance back up, just like they did before. I know I wouldn't have been able to do that on my own. I also know I would have pushed myself way too hard if were trying to exercise on my own. Which probably would have made me give up on exercise because of how terrible I felt. I've certainly had times where I've pushed myself too hard in CR, then felt awful later. But since the medical staff was there to monitor everything, at the very least I knew nothing super crazy bad was happening. The few times something dangerous actually did happen, I was very glad that the medical staff was there for help.

My resting HR used to be in the 90's or 100's. 80's if I was laying flat. I had gotten so used to it that I didn't really feel it. Once I was on the right meds my resting rate dropped to the 80's, and now on a better combo of meds it's in the 70's. I will still get flares of symptoms and have a resting rate in the 90's or 100's but now that I'm not used to it, that rate feels very very uncomfortable. If it's a new symptom for you, maybe call your doctor. Are you on meds, or had anything change recently? I know if I'm having an allergic reaction, am getting sick, or even just having a few bad or trigger filled days my resting rate goes up.

It took me about a year and a half of cardiac rehab (and being on meds that actually helped) to build up to walking a mile. And honestly I saw the most improvement after I was on the meds. It was a pretty slow pace (about 35 min of walking) and I could only do it on good days. But I could do it! Then I got a cold back in September and that knocked me down to only being able to walking between a half or 6/10th of a mile. And I'm still not able to walk for the 35 min I could before, even at a slower pace. Since my docs say to push as much as possible- if it's a short trip on a good day I'll try to walk when I'm in a store running an errand. But if it's a big store and/or a bad day I'll use a motorized cart... or I won't go at all.

Good for democracy. Bad for Potsies. Even with jumping from chair to chair whenever I could find one along the line, by the time I voted I was so foggy and lightheaded I hope I voted for the right person .

I get a similar feeling. Sometimes for me the pounding is just regular tachy. But other times I get a very skippy and poundy feeling together (which is different from the "normal" heart pounding sensation). For me these happen infrequently but seem to come in clusters- like a week of them happening once or twice every few days, then nothing for months. I actually caught one on my heart monitor and my cardiologist said the one I caught was a PVC- but wasn't concerned about it. I'd call your cardio or regular doctor and explain any new heart sensation you have. That's how I ended up with the monitor which caught the PVC. Just knowing what it was made me feel better about it.

MIne does this all the time too- the worse I feel, closer to fainting the more it errors. For me I think it's when my heart is raising too much too quick and/or when my bp is very low.

Batik- LOL, yes it's probably also up there with- "but you look good". Weatherman- Great link with information, I appreciate it. Looks like there are only Geneticists in my area that deal with EDS, no Rheumatologists. So I guess that makes my choice between the two easy. Thanks to you both for your responses!

I know exactly what you mean! I was feeling weird/off for a bunch of days and was saying the worst part was I couldn't even explain exactly how. But creepy-strokey-woozy-freaky is pretty accurate.

I saw an orthopedist about a joint problem- that no one can figure out. The doctor did however confirm that I am hypermobile. But told me "that's a good thing because most athletes and dancers are hypermobile, and when you're hypermobile you get less arthritis and injuries". But this doc admittedly knows nothing of Pots (and likely nothing of the EDS connection to Pots). I also bruise badly, mostly on my legs, for no reason. I never remember injuring myself yet I get huge bruises or lots of little bruises all over. For those of you who have been through the diagnosis process for EDS- does this (or another collagen disorder) sound like something I should consider? And if so, who's the right doctor to see about this- Geneticist or Rheumatology?

Sorry you have the flu! I get a flu shot every year, and personally don't get any side effects except for a sore arm. For me getting the flu causes so many horrible autonomic symptoms that I do whatever I can to avoid catching it. Hope you feel better soon!

I had a bad reaction to this drug. When I was still trying to find a diagnosis a neuro put me on it as a trial for atypical migraines, thinking this was a possible cause for my symptoms. I tolerated the initial low dose ok but during the ramp up to the therapeutic dose I developed very high tachycardia. I was sent to the ER by another department in the hospital when, at an appointment, they discovered my hr was in the 160's. After evaluation the ER doc told me I was reacting to the drug and to go back on the low dose and call the neuro about how to get off it. For a few weeks after that I had a resting rate in the 120's and ended up having to see my cardiologist because at that point the drug should have been out of my system. My cardiologist said he thought it was definitely the drug and that my transmitters are probably very sensitive... so it was taking a while to get back to "normal". The neuro on the other hand refused to believe the cause was nortriptyline, said it was an uncommon reaction and wouldn't have lasted as long as it did. Although... he and my cardio seemed to be at odds over other things too. Cardio thought I had Pots, and wanted to send me to another neuro who was an autonomic specialist. The neuro who prescribed the nortriptyline heard about it and took my postural vitals on my next appointment. Then promptly told me that despite having a hr that increased more than 30 beats a min on standing... I probably didn't have Pots because my BP didn't go down when I stood up). Turns out the cardio was right about the Pots so I believe him and the ER doc about the nortriptyline too. I've also had sensitivity to other drugs and my BP usually goes up not down when I stand. (Not sure if those things made a difference or not when it came having a nortriptyline reaction.) Also I didn't have any documented migraine activity- it was a "lets give this a try" to see if it helps scenario. I would say to definitely ask your doctor if you are uneasy or unsure about taking it. Maybe consult your autonomic person too if it's a separate doc from the neurologist rx-ing the nortriptyline.

Yes, last time I was really sick with the flu or some other nasty virus my resting hr was anywhere between 130's to 150's and I wound up in the ER. Not fun being sick ontop of sick. Even a mild cold will spike resting rate up to 120 sometimes.

Ahh yes showering and hair washing- I think that's my most dreaded place for getting dizzy. My pots doc said the hot (lukewarm in my and probably most potsie's case) further dilates the blood vessels and can have a dehydrating effect so it's a common complaint. I guess add to that the hands over the head and it's the perfect trigger. Funny thing about getting dizzy in the shower- I'd actually stopped telling doctors about that because they all looked at me like it was the craziest thing they ever heard. During the first appointment with my pots doctor he seemed unfazed by everything that had tripped up the other docs so I took a chance and told him. I about fell off the chair (from being stunned not dizzy) when he said, very matter of fact- oh yeah it's a common pots complaint. Proving once again it's just about getting to the right doctor to diagnose the right problem. Wish I could get a money back guarantee on the co-pays from all those other docs who told me nothing was wrong.

People in their 70's, 80's and 90's are your exercise partners- only they can exercise more than you can. A small crowd of medical professionals (who've never heard of what you have) gather round your heart monitor readings to marvel over how much it changes every time you move. You've spent so much time the local hospital/ER you now know... what some of the color codes mean, the best place to get lab work done (because they can usually get blood in less than three sticks), and can give anybody directions to anywhere in the hospital. You have your doctors email and talk with the office more frequently than some friends and family members.

Thanks for the explanation Issie! Good to know I'm normally abnormal . What happens in non-potsies, does their heart rate go up just a little or down? I couldn't get a straight answer from googling it. Curious if this is an exaggerated response or a backwards one for potsies.