imapumpkin

Hey, I know this might be a stupidish question but I know a lot of us have chemical sensitivities..does that extend to whatever venom mosquitoes inject into your to keep blood from clotting? because i can't get a mosquito bite without it swelling to the size of a coin and its surrounding area turning red to the size of a baseball. is that a common thing with POTS people because of chemical sensitivities or is it just another lovely abnormality of mine?

thanks! i don't think i overworked it, my onset started after moving hours away to a hot climate, starting a new job and being under a lot of stress. when the flare up started exercise actually made me feel better. i tried to always keep it to about 15-20 so as not to over do it. now all i can do is walk around the block. i have to be a on beta blocker because my resting hr is too high but its a very low dosage so it doesn't bring my already low bp down too much.

I functioned for years not realizing how debilitating POTS really was until i had a flare up, so I guess you could say that I had a mild form until last year. I had been diagnosed with POTS but all i had was some tachycardia and was slightly more easily fatigued than most. But I was also working at a pub-- on my feet for 8+ hours a day, running around a huge restaurant and able to exercise 3 times a week for 20 min. before my system crash last summer I was functioning normally and i'm hoping to eventually get back to that. Even so, the doctor says I have a mild case on the POTS spectrum which sounds like what she said to you and she has hopes for me to essentially get better with some intermittent flare ups. I wouldn't worry too much that you're slowly descending into worse and worse POTS, now that you know you have it and are seeing the doctor, actions can be taken to improve your situation and I'm sure the dr will have some suggestions once she gets the results from your testing. Good luck!

My TTT was only about 5 minutes, it was all they needed to see that my change in blood pressure and HR confirms POTS. It's good that you didn't have to go through that unpleasantness for long and they got the info they need! I don't think syncope or even pre-syncope is necessary to prove anything on a TTT, but it definitely reinforces the diagnosis.

I wax and wane with my symptoms but essentially I've been in a flare up for about a year now. It was def made worse by my MVP and was probably helped but set me back when i had heart surgery in January and was recovering so i couldn't exercise. Right now my primary and biggest symptom is just really debilitating fatigue, but beta blockers have helped my tachycardia immensely. Other than fatigue and brain fog i think symptoms have improved with increased salt, fluids and pressure stockings. As for reversing all this, i wish i could say i knew for sure that it can be, but everyone is different and some people get totally better and some people get better with flare ups, and some people deal with it all their lives. The doctor predicted that in my case I would probably get much better but still have flare ups from time to time. Now I'm just doing all I can to figure out how to get out of this flare up and regain some semblance of my normal life. Hope your experience with Dr. Hohler is as positive and helpful as mine has been!

I see Dr. Hohler also and she's wonderful. If you have questions she's really good about returning emails so I wouldn't hesitate to drop her a line... because you can forget to ask stuff in the moment and it's a lot of information coming at you and can be overwhelming. If she wants to you see others specialist, she'll likely recommend them as needed (for example if she thinks you might have a connective tissue disorder she'll recommend you see a geneticist) but I don't think that means you have to go out looking for other specialists. Another bit of advice-- when you have your TTT make sure you are very well hydrated beforehand! it's a doozy...

I'm curious about this as well...I've been on lexapro since I was 17 and only found out about the POTS when I was 22..and then didn't start feeling the effects of POTS until 24. So...I really have no idea if the SSRI or benzo that i'm on is helping or hurting...i've also heard benzo's can contribute to autonomic dysfunction. who knows. Also, am I the only one who went on lexapro and had total smooth sailing? it sounds like everyone else's experiences with getting used to it the first month were awful.

On metoprolol, keeps my resting heart rate under 100 and without it, or on a lower dose it can get up to 130! I'm a big fan, although as others have said, it does cause already low blood pressure to drop even more..It just means you have to do more to keep it up...more liquids, salt intake, pressure stocking etc. it might take a while to find the right one for you, also. i tried propranolol last year and reacted to it terribly. Metoprolol is good but i need the slow-release tabs in order to keep my hr under control. Good luck!

It's not as cut and dry as saying it's rare. Yes, often people with POTS also have genetic issues as well but not all of them do.

no...echo's you're heart. mitochondrial abnormalities are your genes and DNA. you'd have to go to genetic counseling or at least meet witha geneticist. blood tests, dna sequencing..those kinds of tests.

Thanks for the responses! I'm just so frustrated that this doctor who I've never seen before, who only examined me for a few minutes and found no visual evidence to clinically diagnose ANY connective tissue disorder, but for him to tell me "hey, if you don't have loeys-dietz then you have an unspecified connective tissue disorder" is kind of very upsetting. An unspecified connective tissue disorder? Since when? No one has ever said that to me, that has never been suggested by any doctor I've seen since my POTS diagnosis and I present no symptoms. I feel like he just wanted to shove me into a diagnosis, put me in a box and move on. I'm sorry but just because I don't fit into one box doesn't mean I have to fit into another. I can't help it, i feel really angry with this doctor for making all these assumptions. He also was condescending about the fact that my cardiologist might actually be on top of my heart situation. At one point he asked me what i do for my low blood pressure. He looks down and with a judgmental look, goes "Do you WEAR pressure stockings?" (He saw my bare legs as I was wearing a sundress and had left my stockings in the car because it was 92 degrees outside.) I said "yeah, they're in the car, it's very hot out." He looked surprised. I am very young looking. I'm 25 but I look 19 or 20 and my boyfriend is also young-ish looking and he was with me. The doctor seemed to have an attitude like we were both just dumb kids and that I don't have a good grasp of what's going on in my body. I don't see my POTS neuro specialist for another month and a half and I really want to ask her what the heck happened to me in that geneticists office. I don't want her to just take is word that I have an "unspecified connective tissue disorder" just because he is a physician and wanted to assign me a diagnosis. I am going to request a copy of the report from the visit because I feel like I didn't have the capacity to stand up for myself and say "wait, i don't understand this" because it was late in the afternoon, we spend 3 hours waiting, it was an extremely hot day, we had driven 2 hours to get there, i hadn't eaten since the morning and my brain fog was overwhelming. I have faith in certain doctors but I am not about to be forced into a diagnosis that I have no reason to believe I have.

I went to meet with a geneticist yesterday at the recommendation of my POTS specialist neurologist. I thought I was going there to rule out whether a my POTS might be a mitochondrial inherited thing. Instead I guess I was going there to find out whether I had a connective tissue disorders..EDS, Marfan etc...and I'm so confused. My neurologist never inidicated that I needed testing for these syndromes because I present absolutely no hypermobility and essentially none of the symptoms of any of the four main syndromes they were searching for. He automatically confirmed through clinical diagnoses I don't have EDS, Marfan Syndrome and sticklers syndrome, and said he really really REALLY didnt think that I had Loeys-Dietz but more or less insisted I get tested for it...even though the only symptoms of it i have are easy bruising (which can be explained by my von Willebrande's disease) and my congenital heart problem (the mitral valve prolapse i had surgically repaired in January). He basically said he wouldn't be at all surprised if the test comes back negative since I don't present the distinguishing symptoms. He then says if it does come back negative (which i expect and super hope it does because it coincides with a higher risk of aortic aneurysm) then I must have an "unspecified disorder connected to MVP and POTS". I don't even know what that means. He also asked if I was planning to have children in the future to which I said definitely. He also said I would need to go back and see a geneticist again when I plan to start a family because connective tissue disorders "can cause complications for pregnancy". I feel like a deflated balloon. I'm really confused. No one has ever mentioned connective tissue disorders to me in my case of POTS, (although i know of them from this forum which is why i was positive when they started asking me to stretch and pull on my skin that they were testing for EDS and I knew I didn't have it) and while I suspected there was connection between my MVP and POTS i never thought it was a connective tissue thing, and having just recovered from heart surgery, the thought that i might be at a higher risk for aortic complications feels miserable. Also being told that I might have something preventing me for having a family which I have always wanted and want so badly makes me feel awful. The doctor also seemed extremely skeptical that my aortic valve has been normal. He asked if "when you got your echo, did they tell me your aorta was normal?". I said yes. He found this to be a dubious statement. The thing is, I've had 1-2 echo's a year and have been seeing my cardiologist for 7 years. If there was an abnormality in my aortic valve, wouldn't he have mentioned it? As in, isn't that something else I might want to watch and monitor? Now he's got all my anxiety bells and whistles going off. I couldn't sleep last night because I was worried there might be something else wrong with my heart and possibly that I might have a disorder that hugely complicates pregnancy. I guess what I'm asking is, wouldn't my POTS specialist and especially my Cardiologist have mentioned if my aorta was a concern or that I was being checked out for connective tissue disorders? I just dont really get what happened and I feel like all it did was up my anxiety level.

this is so good!! the more awareness the better!

I deal with constant chest pain even after my vavlve surgery. my POTS specialist essentially just said it happens to POTS patients and there's nothing you can do about it. as long as your tests check out, which it seems like they do since you've had quit an array, i would trust your doctor that you've been truly check and only be concerned if your chest pain changes drastically. if peace of mind is mind is important to you, you could do what i did, which is to buy a pulse oximeter, they're about forty dollars and when you have chest pain put it on, check your oxygen saturation and your hr. i figure that if my vitals look normal, i'm probably fine for the moment.

Excedrin Migraine and another prescription migraine drug i tried (forget the name) also have caffeine in it are really irritating to your ANS. Unfortunately when my migraines are really bad, like pushing my pain threshold bad, the only thing that helps is something like a low-dose Vicodin. Could you ask your PCP for a small (a few pills) low-dose "just in case" Rx for a a more heavy-duty painkiller?

andybonse-- has anyone discussed with you the link between anxiety/panic attacks and POTS? I know bebe mentioned the connection between anxiety and higher levels adrenaline and in a constant state of fight. Often POTS is misdiagnosed as anxiety and they are also interlinked between the physiological and the neurological so I wouldn't be so quick to assume your shortness of breath is "in your head". Shortness of breath, or "Air hunger" is a common symptom of POTS. However, shortness of breath is not always tied to tachycardia so beta blockers will not necessarily help with shortness of breath. On the subject of beta blockers, I take metoprolol to control my HR and I have been having very good results for the past 4 months. My HR still increases upon standing, however it returns to a lower rate much more quickly on the beta blocker. Of course everyone is different as the other posters have said, but my experience has been good. That being said, I did not tolerate propranolol. Beta blockers may help some things but it's not a miracle pill it may only help some of your symptoms, particularly your tachycardia. As for the exercise and being active...a lot of us were very active prior to POTS onset. I knew I had POTS for over two years during which it was essentially dormant in my system and didn't flare until last summer, before which I lead an extremely active lifestyle...now I can only take short 10 min walks. Its very frustrating and I get the whole being bored inside thing. But everyone is different. Some people can exercise normally, some people can exercise moderately and some are entirely exercise intolerant so you really need to figure out what works for your body and your POTS and not set unrealistic goals for yourself.

have to echo lynnie here: WATER, V8, stockings and knee-bends (as well as what the call pedal pushing...extend your legs and push down like you are stepping on the breaks of your car, then flex back up.) to get circulation going in the legs. sometimes i get into the 80s/50s at night. i'm told this is lower than my dr would like but if i'm not having symptoms it's less worrisome. You mentioned your pressures throughout the day and...how are your other symptoms? Like if you're at 70s/40s are you feeling very faint and weak or do you feel fine and simply have low bp readings?

I don't watch professional sports on tv unless i am out-voted. But i've noticed that many professional basketball players (like Carmello Anthony) wear pressure cuffs on their arms and sometimes on their legs. I asked the actual bball fan in the room why carmello and others seem to be wearing them more often and he said "for circulation! it improves circulation!" ...i o wear pressure stockings every single day to stop blood pooling in my lower extremities so i know that pressure cuffs are good for circulation but if i was well and didn't have to wear them, i wouldn't wear them. i played recreational sports growing up and i don't get this trend of wearing pressure cuffs. I never wear my stockings while exercising... running and cardio by definition get your blood pumpking...so can anyone explain to me this growing trend of wearing pressure cuffs to play a basketball game when stockings and cuffs are primarily for those of us with actual circulation issues?

I spent last summer in DC with temps in the high 90s low 100 degrees and it was a misery...I'm fully confident that the move and the heat triggered my POTS to flare. I would recommend having access to a POOL, even if it's just at a local gym. I found that even inside the apartment with the AC blasting, it was like my physiology could tell it was still monstrously hot out because of the changes in barometric pressure. I've never been to Seattle but a close friend lived there for years and says it doesn't get terribly hot the way it would in say, Las Vegas or Houston (or DC. bleck.). The best relief I got was in a pool. Not only was it total relief from the heat but I felt many of my other POTS symptoms subside. In the water gravity obviously doesn't affect the body the same as on land so blood isn't working against gravity so hard and there's less pooling. I felt almost normal in the pool. Also eat lots of salt! Good luck!

here, here katybug.

jkoconne- you are not alone in this. i also experience chronic intermittent chest pain that feels stabbing and feels like it is coming from my heart but all tests have indicated that there is nothing cardiac that is causing it. I specifically asked my POTS specialist (a neurologist in Boston) what would be causing chest pain in POTS patients since there have been so many threads on this forum about unexplained chest pain. She said there are a number of things that could be causing the chest pain, possibly what Katybug said about thoracic perfusion, but she said it could be many other different things that will never be explained/understood. I get chest pain and I admit it does freak me out because it's localized to the left side and sometimes radiates to my arm...but after my valve surgery in January I've had my cardiac surgeon, the hospital cardiologist, my own cardiologist and an ER doctor assure me based on EKGs, holter monitors, Echo-cardiagrams and a week's worth of constant monitoring in the cardiovascular unit of a major hospital post-surgery that it is not coming from my heart. It is good that you are exploring different avenues of what this could be, although if you're cardiologist is telling you it's not your heart, try to have faith in him/her. Believe me i know it's hard because even i sometimes still worry even though I've been reassured multiple times. but it does help to step back and think "Ok, my heart is healthy now. it's not my heart. It's not a heart attack. the doctors checked. trust them." One thing that has helped me given that I am so keyed into my bodily symptoms and so anxious about my health was to buy a pulse oximeter. You can get them at a Rite Aid or CVS or Walgreens. It has been helpful to me by being a reassurance; the way I see it is, if my pulse-ox and heart rate are good, esp when I am experiencing symptoms like chest pain and shortness of breath, I am probably okay for the time being because when you do go to the ER, what do they do? Take your vitals. And if your vitals don't look concerning you are likely not in immediate danger...that's just how it helps me. It's just one of those "for your own peace of mind" things. I hope you find the answers the will help put your mind at ease about the chest pain, and know that you're not the only one!

Thanks for all the responses! It's hard enough dealing with POTS itself let alone dealing with ignorant and judgmental people, particularly when you think that the person should be understanding and supportive. I am thankful that my boyfriend is supportive, understanding and not putting up with his mom's ridiculous behavior. Naomi- You're right; disabled doesn't mean what people assume it means- incapacitated forever. It doesn't have anything to do with being labeled, it's a financial decision so that we can have fiscal support, not a way to label us as invalids. I would really like to sit down and explain my situation to her but she is terribly stubborn. She has apparently googled POTS and made certain assumptions about what she has read but doesn't necessarily know my situation, nor does she care much to understand as all protests by my boyfriend have gone ignored. It is also doubly difficult because my boyfriend and I are long distance..he lives 2 hours away so I have been unable to drive there and visit since my flare up. My boyfriend has been wonderful enough to do the driving to come visit me, but it means I haven't seen her in person in quite some time so I can't sit down with her and discuss things like grownups, and she also can't see how much better I've been doing since my surgery. Ash- You make lots of good points and it makes me feel optimistic and like I have a load of good information to back me up .And I'm sorry you also have a MIL who isn't supportive or understanding. I asked my bf if he thought his mother would be understanding if I told her about all the people on the forum who have successfully had children or have been told positive things like your doctor has told you. I was joking. He said "Probably". I don't know that explaining anything will be helpful. There's no pleasing some people, particularly mother's of boyfriends. Dani- more good news! question-- did you have your child before or after your POTS diagnoses?

Sending good thoughts your way. Don't expect the worst! Sometimes the doctor just needs to tell you complex things in person it doesn't nec mean serious or bad.

I used to use excedrin migraine when i felt a migraine coming on but after my POTS flared up I couldn't use it anymore because of the caffeine. I took a dose for a migraine one night and I was up all night (think unable to keep eyes shut) with adrenalin surges and crazy tachycardia...my brain was racing, and I actually thought I was going nuts. I find aspirin to be very tolerable, but then I am on a baby aspirin regimen following cardiac surgery.I also have bad menstrual cycles and I started taking an iron supplement called Iron Glycinate (which is gentle iron...its easy on the tummy and has B12, Folic Acid and Vitamin C) to prevent anemia and beef up my hemoglobin that might be lowered by the use of NSAIDs.

I posted the other day about how I have been doing much better lately emotionally about working through having a chronic medical condition but I feel like I just got knocked back down several steps. I guess I spoke too soon. So of course people who don't have/deal with illnesses like POTS and dysautonomia may have a hard time understanding it (i mean even the medical community and those of us with POTS don't fully understand it) but sometimes dealing with people who insist on being ignorant about the "disabled" community is frustrating to deal with. Something happened yesterday that has been very upsetting to me. My boyfriend informed me that he mentioned to his mother that I would shortly be filing for disability (under the advice of my POTS specialist neurologist given that I lose my health insurance through my mother next fall). His mother then proceeded to wind herself up and then went off about how the fact that I will go on disability means "She's never going to be able to have children." I guess she got very worked up about how I'm not going to have the energy for babies and essentially implied that I was not a good potential daughter-in-law if I cannot give her son children. To add insult to injury, this discussion was in front of their whole family out at a fancy restaurant celebrating his sisters birthday. I am very hurt by this for many reasons. First, I feel it's totally inappropriate to discuss my potential mommyhood over dinner without me present to defend myself. Second, because she seems to have made up her mind that I am damaged goods since she apparently associates SS disability with being handicapped which I think is completely unfair. I am only 25, I have been doing better with my POTS since my heart surgery and having good results with being on metoprolol for my HR. Furthermore my neurologist has told me my dysautonomia is on the mild end of the spectrum, she doesn't expect my POTS to last forever and if I do deal with it my whole life it won't be constant issue, only occasional flare ups. My boyfriend tried to explain all this to her but she just dug her heels in and is now convinced this is a serious concern since in her mind, I won't be giving her any grandchildren. This also hurts me because I definitely 100% want to have a family someday. I have known I wanted to one day have children since I got my first baby doll as a young child myself. This has been a concern of mine throughout my whole health issue journey and I have been cognizant about asking every doctor along the way how things will affect my ability to have children. So far, not a single doctor has said to me "You will not have children because of this". In fact, my cardiologist has on more than occasion reassured me that it is safe to have babies. Furthermore, one of my heart surgeon's main concerns going into my surgery was making sure I would be able to have children by assuring me if my mitral valve needed replacing if they couldnt repair it, he would use a bioprosthestic valve rather than a mechanical one so that I wouldnt have to be on warfarin because warfarin is unsafe for pregnant women. My boyfriend and I have been together going on 4 years. We are in a loving and committed relationship and have had many discussions of a future and family together. He believes we can do it. I believe we can do it. Neither of us are ready to get married yet so this isn't a pressing issue, and who knows how I will be feeling when it becomes one? I could be feeling much better . I could be doing very well. I could be off disability by then. No one knows. I feel really marginalized by my bf's mother that my only value to her son is whether or not I can have babies, which I WANT to do. People on this forum have had babies after a POTS diagnosis. I'm not saying it's easy but after POTS I'm really not expecting anything to come easy from now on. I just don't know how to handle someone just not understanding my situation and making it seem like I'm responsible for my medical condition.