Praxxtor

Hey Goschi, That's why I'm wondering haha! I had the TTT done and my resting heart rate was 50 and by the end I was clogged at 150 bpm. I was told I experience venous pooling but strangely enough my blood pressure remained stable throughout the whole test. Why is that? If blood is continuously pooling into your legs, wouldn't the blood pressure be affected? The only advice they offered me was to do the things I'd already been doing. I'm not sure why they didn't offer me medication, could it be because my BP remains stable? Yes I've noted this from others too that quite often when they feel really poor their vital signs paint a very different picture. I wonder why that is. The wonders of POTS! Oddly enough I find if I remain homebound for a while my symptoms improve greatly, does anyone else feel this way? Something makes me think I might have adrenal issues instead that could possibly be mimicking POTS. I say this because last year I attempted education and managed to push myself to attend each day for 2 weeks and then I simply brokedown. Took me about 6 months to fully recover. I find as long as I lead a very sedentary lifestyle my symptoms are quite alright but whenever I attempt to work/study something that requires a routine I simply crash in a matter of days.

Thanks for that explanation. I'm no doctor but I just thought that if you experience blood pooling wouldn't the end result be a drop in blood pressure?

I'll stand and start to feel awful with all usual symptoms and blood pools in my legs but my blood pressure continues to remain stable. My relative has a milder case than me and she experiences a drop in blood pressure after a few minutes of standing. I just find it odd that even though I experience pooling my bp remains stable. Is it simply down to how effective the body is at compensating?

Why does blood pressure remain stable in some POTS patients and in others it either drops or increases? I've mostly understood how Hyper and Hypo Pots patients work but what about those with no change in blood pressure? You see explanations for why POTS sufferers are Hypo or Hyper but I never see explanations as to why in others the blood pressure remains stable. If anyone can shed some light, I'd appreciate it. Been researching for a while now...

Good on ya bud! I'm sure after this ordeal you can appreciate good health more than ever now haha! May I ask what age you are? I ask 'cause my Autonomic Doctor mentioned that she sees good recovery rates in those aged mid 20s and even upto mid 30s. I don't know why I got POTS but I'm sure it wasn't viral as I've noticed a very slow progression of my symptoms, about a decade. Where your symptoms mostly instantaneous?

Feels good doesn't it to be taken seriously for once. I know all too well how it feels to be fobbed off by every doctor you visit for help. I had to go through 2 seperate referrals of Cognitive Behavioural Therapy each referral lasting around 6 appointments. I was also sent to a Psychiatrist to evaluate me as the the doctors were 'convinced' that I had some sort of physciatric condition. They even went as far to label me as "Munchausen". Then I met another GP who was also convinced my symptoms were 'anxiety' related but since he noted that I had been coming to the GP surgery for over 5 years complaining of the same issue and noting that I was no better he simply said "What do you want?" Initially I was in shock, I wasn't quite sure what he meant by that. I replied by saying "A referral to the Autonomic clinic". He said "Done!" I was flabbergasted, I had been trying to get a referral for almost 6 years. In the process being labelled, "anxious", "depressed" and "Munchausen". What a relief it was when I got the letter through stating that they evaluated my results and I had been given a firm diagnosis of POTS. When you know something is wrong, you know something is wrong.

Well the first result that you did in the afternoon very much so goes hand in hand with a POTS Diagnosis. You just have to replicate it in front of a doctor knowledgeable in Dysautonomia. Sometimes people pass the first TT test and don't get a diagnosis until the second or even third try all because the body decides to behave well particularly on a day you need it to breakdown haha! It's common I believe for POTS patients to see a reduction in symptoms in the evening. Also POTS patients heart rate fluctuates all the time. There are times when we feel crap even when our vitals are fine. Do you notice symptom improvement upon lying down? I've fainted over ten times but then again dizziness really only happens with postural change with me and is never constant like some other folk here. My biggest issues are my eyes and digestive system (stomach, intestines). I guess POTS can manifest differently in all of us but what we all appear to have in common is an abnormally high heart rate. Your pulse pressure appears to narrow quite a bit, might wanna ask your doctors about that too perhaps? Stay Strong

Did they do a tilt table test and how long did the test last? Have you tried doing a Poor Man's well in your case a Rich woman's tilt table test? You'd lie down for 10 minutes and then take a reading whilst supine and then proceed to stand taking more readings at 2,5 and 10 minutes while standing. If you were to post your results here we might be able to give some advice! If nothing concrete shows it doesn't necessarily mean nothing is wrong. Neurocardiogenic Syncope can sometimes take upto 45 minutes to rear its head! 45 minutes was the length of my TTT! Stay strong!

Thanks for the reply Digby. Exactly what I thought too. When I had my autonomic testing done I was told that the results were perfectly clear "no question about it" POTS diagnosis. Although when asked why I don't experience dizziness they sorta dodged the question. You see they automatically assumed dizziness was my main issue but when they asked they were surprised to find that in actual fact it was something else completely lol! Yes I do experience Tachycardia and they are always really forceful beats. They make me shudder with the unrelenting force of each beat.

I feel like I'm the only one? My biggest gripes are my eyes and digestive system. Would it make sense that POTS can cause issues elsewhere without causing dizziness? It's odd because there's such a huge emphasis on dizziness, as if it's almost a compulsory symptom. Anyone in the minority like me? Also I've got a weird symptom at night when I try to sleep, my chest area is freezing and because of it I can't fall off to sleep. Anyone have any ideas?

I have this and still have it. Because my pupils can enlarge to the point that there is no iris left I cannot be under most lighting. I had to quit my job and couldn't continue going to my study classes. When I did persist it resulted in excessive tearing, eye pain and blood shot eyes. I couldn't function like this so I went to see an Opthalmologist at an Eye Hospital whom found the size of my pupils quite interesting. He brought the Professor of the clinic over as he was a Neuro Opthalmologist and after listening to some of my other crazy symptoms (Which are now all under the label POTS) he done some examination and mentioned it could be 'excessive sympathetic activity'. Fast forward 4 years later and it is still ongoing. However do I note that the longer I rest the better my eyes become. Not only symptomatic wise but also in constriction and dilation. So it could make sense why when I was upright for long periods (work, study) and having POTS the sympathetic nervous system was working on overdrive to keep me upright?

That's quite interesting. What 4 foods are those? Were you surprised to hear that you had severe food allergies? Like sometimes you might eat a specific food for years and never realize that it could be the cause of many symptoms or were your symptoms upon you the instant you ate? I got tested for gluten intolerance which came out negative and for the sake of experimenting, I still tried the gluten free diet but it made no difference. I've also been on the Paleo diet to no avail. I'll look into that thread of yours Katy! Thanks!

Nice to know I'm not the only one. Wish it wouldn't be so chronic. As Goschi stated it, for me it is the most debilitating symptom too. I don't think there's much we can do to be fair. I always get the the statement the "digestive system is very complex" and I even had a head nurse at the clinic tell me that there really isn't anything they can do for these symptoms. When you're chronically sick for so long it becomes your normal state. Oh gosh, Katy you're so right, bowel urgency is extremely frustrating. It's sorta funny because all my major issues i.e my gut and eyes are things they can't fix, these being the ones that halt me from leading a normal life. Stay strong you lot!

Can it be possible to be both? When I have things to do (the world outside) I can have bowel movements minutes after I eat anything, even something as simple as a rice cake. I can pass many bowel movements as much as I eat all within minutes of eating. I've recorded 20 bowel movements a day. Yet when I rest at home for a few days, anything I eat seems to just stop causing a massive bulge in my abdomen, that won't budge, that feels awful until the food starts to move, which usually takes 4 hours on average. It's like, you're ****** if you do and you're ****** if you don't. My docs always recommending to eat smaller portions and more often, but this does not work in my case. I literally only eat breakfast and dinner, that's it. If I were to eat on a regular basis, I'd be toilet-bound. When I worked, I didn't eat anything for breakfast, and nothing at work (9 hour shifts) until I got back home, simply because my gastro symptoms would halt me. Anyone else like the toilet as much as me?

Before leaving out I was exhausted and had very little energy to do anything. As I left home and began walking I found myself lacking energy to enjoy the walk. During this exhaustive period I noticed chest discomfort and difficulty in taking breaths and legs felt heavy. Just under the 15 minute mark I noticed myself feeling better, my chest discomfort began to fade, I felt like could inhale and exhale better, the tightness had faded. Then a minute later I began sweating in my underarms despite feeling freezing all over. My nails were blue! I now felt I had energy, I went from a zombie to a human. Am I right in assuming this was all to do with the release of adrenaline? This is how my days usually start. The sweating always starts in my underarms and from there depending how long I am active/upright, will then include my whole back, chest and abdomen. Finally when I sit down or have a chance to relax, I go back into zombie mode within moments and yet again find it very difficult to muster up any strength. Is this again because the adrenaline has subsided, so I become exhausted when resting?

Hi there My heart rate fluctuates greatly when standing still but is very stable when walking or lying down. It seems to drop or increase 5-20 beats every few seconds. I do find it symptomatic to be upright. Why would my heart rate be so unstable? I've had family wear the same monitor and their heart rates are far more stable with a small variation of 1-4 beats. Thanks for any help