kkirsten

Thanks for replying!! I would’ve thought so too! But regarding the gallstones.. I started uni last september and stupidly didn’t eat healthily or often enough as was out drinking with friends a lot (before I got ill). I lost 5/6kg in one month. I had liver blood tests during the time that showed my enzymes a little all over the place, from partying I assume. So that sudden weight loss, combined with symptoms I get in general (digestion has a large role in my problems); chest pains, back pain, nausea and indigestion etc. I thought it could still be that. I have also never in the past had Bilirubin levels in my blood raised. Yet, since then, I always do. One assumption from a doctor was that my tachycardia and illness is all caused by gallstones passing or sludge in my gallbladder. My mother had pancreatitis and also said my symptoms sound very much like what she had, pain wise etc. But of course noone knows really 🤷🏼‍♀️ Yes I have seen Dr Gall a few weeks ago. He was lovely and sent a lot of referrals to gastro, neuro and gynaecologist etc. I have also had extra heart tests to rule that all out, yet I know I still have SVT and a slight (not very big) BP drop with posture/ standing.. Again, noone knows what aspect could be the cause. I know its probably just wishful thinking but something in my gut is telling me this illness is not dysautonomia, I don’t know why.. Things I get like a heaviness and cough etc I’ve had since I fell ill, and the Dr then suggested I was suffering from a viral pneumonia. I just wish I could have some kind of full body CT to know about everything once and for all! It would give a couple of answers to suggested diagnoses xx

I am having Lung Function Testing done in about 2 months, so have to carry on until then with this! I don't notice any HR or BP changes, just coughing and chest aching/tightness

I have been given Zantac and tried that for 6 months, which did not affect or make me feel better at all. I am wary of PPI's as I have heard they can cause heart irregularities and side effects due to the fact they entirely inhibit stomach acid. I already have problems with my vagal nerve so feel this would possibly make my heart palpitations/ skipping worse. I would have thought zantac for so long would've been enough to see whether my problem is reflux or not, and also it was suspected gallstones yet noone has done a scan other than an ultrasound. I don't really understand why they trust them so much, as people have said they have gallbladder disease by ultrasound did not pick it up, only CT.. Plus if you are not having an attack that day, or the stones have moved, surely it isn't accurate? I am concerned still about the heavy dull chest ache I get, as well as a separate type of pain which mimics pleurisy (have to take shallow breaths until it goes away, as deep ones or a sneeze are agonising!) My cough and feeling of breathlessness is still the same. I'm wondering whether it could be asthma, yet why would that make me so ill, and it still doesn't explain my hypotension, tachycardia, gut issues, nerve stuff etc.. I have to wait 2 months to have a Lung Function Test done! x

I know! The doctors say my cough and breathlessness, basically all of it is acid reflux which I really find hard to believe at all, it is far worse so I don't believe acid could cause someone this much grief and to feel super unwell.. I have chest heaviness as soon as I lie slanted or flat down, its really annoying and feels unbearable, like a tight band across my lower/mid chest!? x

I've had a couple of normal chest xrays, yet still know that these symptoms are too painful and extreme to feel pots related (i.e. just having to learn to live with them).. I have been booked for a lung function test but it is in August !? So crazy how long they make you wait in this state x

I have had the cough/chest pain etc for a whole year today actually! I had a d-dimer before and it was normal, I have read sometimes there can still be a possibility. I wouldn't actually know if it is possible to have them for a year and still be alive haha.. Next time its bad, will definitely go x

I have recently really been querying my dysautonomia diagnosis, personally feel as though I may have been misdiagnosed with just “orthostatic intolerance”. People with hypotension that I have spoken to say they do not have any of the symptoms I experience. I feel very short of breath, sitting or standing, severely heavy/tight chest at rest, when I lie down to sleep it feels like a rock is ontop, and when I sit up, it’s alleviated. I have severe stabbing chest pains throughout the day, tests normal for heart. A dry cough too and lightheadedness. With exercise I feel i can’t breathe well or take a full, comfortable breath in. All asthma inhalers haven’t done anything and my sats are always 99%.. It is just a feeling of difficulty breathing. No way is it any form of anxiety, I feel unwell permanently and know that is an entirely different, less worse feeling! I am 20, normal weight, no prior health issues, all of this supposed “dysautonomia llness” began after taking two contraceptive pills 11 months ago. My symptoms have got much worse recently, can’t lie flat in bed at all and chest pain worse all over. I have never been given a CT scan. I know in my gut something more is wrong that could maybe be an easy fix. I really don’t know if its dysautonomia, I never experienced a specific “flu” or “virus”, just the birth control pills (which gave me awful symptoms at the time so stopped them). Any comments welcome x

I get symptoms without standing up sometimes, just at rest

Hi all, had my exercise stress test today. I firstly want to point out that I haven't properly exercised in years, yet have gone on very long walks, visiting shopping malls or going on small hikes in the country. Yet, in the past month or more I have experienced a throbbing/aching feeling all over the middle of my chest, which seems to coincide with feeling slower, harder palpitations, dry coughing and breathlessness. This is combined with a crushed, heavy pressure in my chest which has always been there, but feels worse recently. I have had two 24 hr monitors, echocardiogram, blood tests (all so far have been normal). I cannot actually lie down flat or I feel runs of skipping beats or just generally a crushed chest and like I can't breathe at all. Yet no doctors have seen anything wrong yet (I am under the care of specialists, yet am confused as to how this is dysautonomia as it happens at rest without tachycardia). Today I had a bicycle stress test, I managed to cycle at a steady medium pace for around 12 minutes, before I wanted to stop as I had bad aching in my chest, I could see my heart rate had been 150 for the entire duration, and felt like I could breath less so than normal, with a bit of a cough.. I wanted to know if anyone has suggestions, as I am at a total loss, everything is normal yet I don't entirely feel its just harmless Dysautonomia, as my problems seem very heart related in a bad way. For example, why would I be getting so much worse; more pain, more breathlessness? Can it just be severe lack of fitness? Seems odd though

In need of a bit of optimism or hope here, as I personally can't carry on living with dysautonomia. No meds are actually helping a single symptom that I have. I am waiting to see Dr. Gall (UK specialist) privately, yet I am actually almost scared that this visit will make the diagnosis of autonomic issues permanent, and for me that feels like a death sentence as I am in university and feel all future hopes have been shattered. I have tried to be very hopeful, trying extremely hard to carry on going out or studying, revising (I had 5 months of bed rest when first hit, and got up after that, trying to resume my life asap). Yet the flares I have feel like actual heart attacks, and I can't lie flat at night to sleep, everything is awful and I really hope I don't have to have this for years to come.. I wanted to know if anyone had any success, i.e. their dysautonomia went away/ got much better slowly/ any kind of success, as I am just really not someone who is optimistic enough to live with something awful like this. Everyday I think about the past when I was fine (13 months ago) and I spiral 😓..

I have the same, it does mean we both do have a form of dysautonomia, its severe orthostatic hypotension. I have the same, from lying down my HR is around 48/55, then shoots up to 150+, it is an absolutely crazy postural change!

Hi, I was actually first ever diagnosed with Costochondritis since becoming ill! It does seem I have both a muscular/ribcage stiffness and pain, as well as dysautonomia. I think I am unlucky enough to have both at once! Yet, with propranolol I don't think I can have ibruprofen:(

Hi! I am living with parents now (thank god) until my exams, before I was at university 3 hours away relying on my boyfriend (poor him!). I have not seen a respiratory specialist, yet am now wondering if Propranolol is causing me to feel 'short of breath'. I read a side effect somewhere which stated 'dyspnea — an intense tightening in the chest, air hunger or a feeling of suffocation, shortness of breath', so am wary now. Aside from this side effect sounding familiar, I also have had hair loss, cold extremities, headaches, chronic hives. All of which are listed as 'common' side effects of the beta blocker. I literally don't think I had these symptoms until months after being on propranolol.. I may ask my cardiologist to swap to something else like Ivabradine, which seems to have way less bad side effects! ps. I will still query the PE with asking for some other kind of scan..

I’m thinking this is what i need, I read a lot about possibly things like clots in young women who take the pill (I took it and after I stopped, I became ill coincidentally).. They all say their chest xrays and d dimer blood tests come back clear and that doctors fob them off, until they pay privately for a CT scan and find clots. I would like some kind of scan like this in the whole tight area, other than silly chest xrays, I don’t believe they show much.

Yes, the year long cough, chest pain and tightness all started as part of a weird virus I had caught, since then they have all stayed. Beta blockers were only introduced around 6 months ago! Just woken up now feeling the same, chest heavier than ever, and my pulse is around 46 without taking morning beta blockers?! Not sure what to actually do now, as always, feel like can’t take a nice breath of air in..

I can’t take anti inflammatory, as it stops beta blockers from working! But I used to and it was the only painkiller to get rid of a bit of it yes. It’s 100% not gas as I spent the whole of last summer taking tums etc and never went away!

Hi, Ever since I first got ill following a flu virus, I have had a heavy, crushing pressure in my mid-lower left side chest. Lying flat at night to sleep makes it feel even more prominent, it feels as though someone is pushing down into my chest heavily with their hands!? It has queried to have been a digestive issue (gallstones or pancreas, yet I have had an endoscopy which was normal!?) This is coupled with the feeling like I can’t breathe fully, at times having severe shortness of breath. I bought a pulse oximeter, and I don’t know if it is broken or not.. My O2 sats fluctuate between 89, 91, 90, 100, 88, 97, (you get the idea), never staying around one value for hours that day. I don’t know if the chest tightness (feels like a tight band but JUST the lower left side) is asthma or not, I am waiting to see someone, yet in the meantime cannot live comfortably with this at all as I feel I need to go to A&E all the time (yet know they probably can’t help). I do get a very low pulse at times, the beta blockers make it sort of stay quite low but I am on the lowest dose as I am very sensitive to them! (15mg a day, which is minimal). My HR stays below 60, dipping into 45-54bpm.. Moreover, I have also had a dry cough for a year on and off (very spasmodically). It seems to coincide with the feeling of a shortness of breath. Been told this is acid reflux, yet tried Ranitidine for half a year and it didn’t work🤷🏼‍♀️ I am also concerned I have actually got a heart problem following the virus, and this all isn’t a form of dysautonomia. If I google my symptoms, the chest heaviness/tightness, dry cough, shortness of breath, burning in chest, all it comes up with is forms of angina or heart failure. I know I am overreacting but it feels that awful and debilitating, that this wouldn’t surprise me. Yet I am 20 years old, with no family history of any heart issues, so know this isn’t likely. The only issues found so far for my chronic issues are Sinus Tachycardia (taking propranolol twice daily for this), and Orthostatic Intolerance (hypotension).. The chest heaviness started BEFORE the beta blocker before anyone mentions that! Anyone got any ideas/suggestions on what to do?

Hi, So I am 20 years old and recently was diagnosed with Orthostatic Intolerance, not entirely sure of this myself as it was a good day when I had it done, now my heart will shoot up to 160s and not go down for ages; more associated with POTS. I was seeing a specialist, who has now basically told me that I need to go to meditation sessions/CBT in order to 'ignore' the skipped heart beats I get, and just to deal with it by drinking more water and having more salt (which doesn't seem to work very well). I am experiencing symptoms I'm worried aren't dysautonomia related, I've had them for 7 months and was trying to tell myself it is just this orthostatic intolerance issue, but I am losing hope as I don't feel that it actually is. I get a severe crushing/tight feeling literally exactly where my heart is (ontop of that area), a squeezing sensation, which at the same time I sometimes get left arm shooting pain or numbness.. My whole left pectoral muscle basically feels this pain and pressure. When this happens, my hands and feet go freezing cold and I tremble all over like it is freezing indoors or something. (this only lasts a few minutes and I will have it when I'm having a great time with friends and am completely relaxed, so I know it's not anxiety). On top of all of this, I get frequent PVCS which are hard to ignore, and sometimes I will get a row of them which is very frightening (around 10), I haven't spoken to someone yet with dysautonomia who gets them in a row like this, coinciding with chest pain.. With my OI, when I stand up from sitting down, I feel a head rush/heart rate change and like it all hits me suddenly when standing; I also sometimes will be lying down relaxed and get a feeling of an adrenaline/anxiety rush out of the blue, is this dysautonomia related/ hormones? Almost every time I feel this dramatic change when standing, or bending over, I get a PVC beat or two, which cause pain (each time I feel a heart beat doing this it basically hurts) I have had a 24hr holter (didn't pick up a bad day at all, it was a good day with 1 skipped beat or so, no pain or tightness), echocardiogram (heart structurally normal) and an ecg. The cardiologists keep reassuring me its very unlikely something is wrong with my heart because of my age and tests, yet how can I feel all of this? Can these symptoms just be OI/POTS, or should I keep pressing them to do a longer holter monitor / other cardiac/ hormone tests? 😪😪

Hi, no that's a good day for me haha.. Usually upon standing it will shoot right up to the 160s and take a while to get back down. I've been diagnosed with Orthostatic Intolerance, yet have all the same symptoms for POTS (gastric/temperature irregularities, literally everything). The only thing I don't have is a sustained high heart rate (over 30mins).

Hi I am really sorry to hear how much your condition affects you! It too has taken me years to finally get an answer for all of my strange symptoms. I think the most annoying thing was constantly being told by Drs that it was just a bit of anxiety, when I would be completely relax and content! Yes if I bend down to pick something up off of the floor, or sit down too fast on a chair/ edge of my bed- my heart will almost always skip a beat and will take a while to adjust, making me feel really unwell. I recommend trying to contact the Imperial college (Hammersmith hospital) Syncope team. This is where I had my test done in a clinical investigations unit. I think they give a lot of advice and hold talks/ groups weekly for support. Regardless, they were extremely kind and very knowledgable, not only about POTS, but they were well-read on ALL dysautonomias. hope things get better for you:)

Hi! Yeah, when standing for around 40 mins my HR was always well over 110, but when I lie flat it takes less than a second to jump back to as low as 55/60bpm. It’s quite scary, not sure what could cause such extreme changes in rates, but it makes me dizzy and gives me PVCs real bad !

Hey! I have never actually fainted, but felt extremely fatigued or tired like I could go to bed straight away! I’m sorry to hear that:( Glad it’s improved!

Hey ck732016! I wanted to reply to this because we have freakishly had the exact same pattern of events. I am also at University and if it's any consolation, here is what happened to me: Toward the end of April 2018 I was out with my boyfriend and suddenly felt really unwell. The room was spinning, I had tinnitus in my ears, I felt nauseous as h*** and my heart was racing like crazy. I went home that night and it seemed to wear off. A few days later, everything appeared again, and this was on and off until around the 1st May when I was woken up with excruciating chest pain on my left side only, and it felt like how you mentioned an elephant was sitting on my chest (just the left for me).. I went to A&E loads of times, and have spent my whole summer at home basically bed resting and having GI tests done; like endoscopies etc. I was told back in May that I just had a bad respiratory virus that would go away, but alas over the Summer break my symptoms started to get worse and I began having ones I didn't have at the start (skipped heart beats & feeling like I can't stand up for a long time). You say that you've had a TTT done and they said you don't have POTS, but another form of dysautonomia. This was literally my result today, they said it's likely I have some form of Orthostatic Intolerance (from the bedrest from the flu), and I need to recondition myself because you can actually try to improve your symptoms drastically. I also have GI issues randomly since April, I believe that the whole virus/resting threw my body off balance and that in time these things will even out. In the mean time, the syncope specialist I saw today who conducted my test told me to: Drink 3 litres of fluid a day, more in the morning as you are less hydrated from the night's sleep. Add sprinkles of salt to your food throughout the day (up to 2 tablespoons daily), but check you don't have a family history of high blood pressure before consuming this. Gradually start reintroducing exercise into your routine, if you start exercising on things closer to the ground (such as rowing machines in the gym, swimming or cycling machines) this will help your intolerance to standing up and becoming dizzy. If you focus your exercise to re-strengthening your calf muscles this should be beneficial (what I'm hoping to do anyway), as it helps the blood flow back to your heart correctly. I was also told to wear sports leggings (as they are tighter and yet can still be worn to lectures and stuff), or compression stockings underneath jeans if you need. It would be good if I hear back from you as we have had the same freaky flu/virus that has started our Dysautonomia (remember you can grow out of this sometimes, it won't last forever)!!

Hi, I just wanted to ask whether anybody experiences/ has experienced similar symptoms to me (daily), as well as how the Tilt-Table Test went for some people. But firstly I would like to say that I had my tilt-table done today and can honestly say it isn't frightening at all and that many people hardly feel the effects of the Glycerine titrate spray! (makes your heart rate a little faster to prompt symptoms). I was so scared beforehand from reading posts online, but it shouldn't panic anyone so much so that they refuse to go ahead with the investigation. It may really help in finding a diagnosis! The nurses were fantastic & helped me calm down. Anyway, aside from this, they found that I experience BP/HR drops which are quite extreme, but never actually faint; just feel like I could fall asleep & feel really heavy headed. My heart rate for example went from 150 standing almost instantly back to 60 bpm lying down, my syncope nurse said that this is a very extreme change/drop, yet is still safe.. Anyone else had results like this in their test? I recently realised how this significant drop was actually causing my PVCS..

Oh gosh that's horrible! As I've said in my post, I have read things about both magnesium and iron deficiency which exacerbate the symptoms of POTS. I feel like I will give the iron supplements a go, as I don't generally have the worst POTS symptoms such as fainting. I agree with rest relieving them! But I aim to slowly reverse the exercise intolerance, to see if it also helps my condition/ PVCS:)