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kkirsten's Achievements


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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. I get symptoms without standing up sometimes, just at rest
  9. 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
  10. 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 😓..
  11. 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!
  12. 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:(
  13. 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..
  14. 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.
  15. 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..
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