kkirsten

48 minutes ago, bombsh3ll said:

Yes you are right, an older and slightly gentler acid suppressing med for that period of time should really have made at least some dent if your symptoms were reflux. Some people (I am one of them) do not find the zantac family effective enough to eliminate reflux symptoms, but for a first time user without a diagnosis it is certainly a reasonable trial. 

Have you had a basic peak flow test at your GP surgery? That can also give a clue re asthma. People also sometimes get a peak flow meter and diary to take their own readings twice daily, as asthma shows diurnal variation. 

Also have you been offered a trial of an inhaler at all?

Regarding gallstones, whilst no imaging is infallible, if you have normal liver function tests and a normal ultrasound scan, I would be reassured, especially if you are a normal weight and have no history of gallstones. 

I hope you manage to get some answers. Waiting for endless tests and appointments is rotten!

How about Dr Gall, have you seen him yet?

B xxx

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

On 4/25/2019 at 10:06 PM, KiminOrlando said:

My breathlessness has to do with the oxygen exchange in the lungs. The air gets in to the lungs fine, but it doesn't get processed and put in to the blood efficiently. Add to that fewer red blood cells and low BP, and it makes me very tired. I'm not technically anemic. Putting me on oxygen wouldn't help. I don't know what controls the process of pulling O2 from air and putting it in blood, but it keeps declining in me. I don't have asthma or any obstructive pulmonary disease.  I do have the cough. 

Have you seen a Pulmonologist and had pulmonary functions testing?

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

On 4/27/2019 at 9:09 PM, bombsh3ll said:

 

If it is any help to you, I know of a lot of patients presenting with the symptoms you are describing, and (after exclusion of serious cardiac/respiratory conditions) were concluded to have reflux as the cause. It was not at all uncommon to see people discharged from respiratory and ENT clinics with acid suppressing medication and an otherwise clean bill.

Now I have had acid reflux my entire life - I remember eating toothpaste at the age of about 7 because we had learned about acids and alkaline at school and I thought it would help (it didn't- made me sick), and taking my dad's Rennies.  When I grew up and learned there was a treatment for it, I started to take omeprazole and haven't had it since (unless I miss a dose, then boy do I know about it.) In my own personal experience, acid reflux doesn't at all feel like what you, or many other people, described, nor could I ever confuse it with the cardiac chest pain I get from POTS.  I also often doubted the specialists' conclusion that all these people probably had reflux.

What I do know however was that some people, but by no means all, got better with acid suppressing medication (proton pump inhibitors) like omeprazole. I know that this is often used as a first-line treatment with patients with non-sinister chest discomfort and/or cough, before referring them to respiratory, so that either it worked or at least they wouldn't be fobbed off as they had already tried it, and many times it did work.  The fact it also worsens lying flat is also a characteristic of reflux. 

It is very simple to get a good idea of whether reflux is your issue or not - have you been given a prescription of omeprazole or similar? If you have, in my opinion it generally takes 6-8 weeks of taking this (but often sooner if it works) should help either rule this in or out. 

B xxx

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

16 hours ago, MomtoGiuliana said:

That is interesting that you mention that your symptoms came on after taking two contraceptive pills.  The same thing happened to me in my late 20s.  Maybe it was coincidence, however, I seem to be very sensitive to hormonal changes.  I also had severe POTS during pregnancy.  I was not diagnosed with POTS until age 34 and post partum.

Have you talked to a doctor about your concern about a blood clot?

I also get symptoms of chest heaviness, which can change with position, and exercise intolerance and lightheadedness.  The dry cough is concerning and I hope you can have these symptoms thoroughly checked out.

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

16 hours ago, KiminOrlando said:

I mentioned seeing a Pulmonologist and getting a Pulmonary functions test.  Depending on the results they may do specialized imaging. Have they even done a chest x-ray?

I have Interstitial Lung Disease. 

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

8 hours ago, Pistol said:

Dear @kkirsten - I can see how these symptoms worry you - I would ask your doctor for a D-dimer ( blood test that detects blood clots ) and a CT scan. You can also go to the ER - your symptoms certainly warrant a visit if your PCP does not want to order any tests. And they can do everything right there and then and if all is well you can go home relieved. 

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

On 4/25/2019 at 11:20 PM, Pistol said:

@kkirsten - when you get a stress test the goal is to get your HR up to what would be the accurate EXERCISE HR for your age -- mine is 150"s. And they want to see you sustain it and they WANT you to exert yourself - getting short-of-breath is the desired reaction and it is normal. Problems occur when you get these symptoms when you DO NOT exert yourself - simply by the act of standing up.  When you get a stress test they are looking if you are developing any arrhythmias or changes in your EKG - tht would show if there is any damage in your heart muscle or if your heart behaves abnormally when put under stress. 

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 😓..

6 hours ago, Eraena said:

I've been to a cardiologist, and anything and everything heart related came back normal, except bradycardia and hypotension. The cardiologist was the one to see the HR increase. But, my BP did drop (120/76 to 90/60.). He did diagnosed me with POTS, but I knew I didn't have it because I don't have a sustained 30+ HR. It shoots up like someone with POTS, but evens out within a minute or so. (e.g. My HR while sitting is 70's, shoots up to 120-130's, but not long after, heads back down to 70-80's and stays there.)

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!

On 4/2/2019 at 3:48 PM, StayAtHomeMom said:

I don't think mine was 100% gas either. But something in it was helping. Maybe the magnesium. I am not sure. 

In theory (according to the ER doctors 10 years ago) if an anti-inflammatory helps chest pain, then for me it was costocondritis. Costocondritis can be scary but benign. I would be checked out for sure with any chest pain. But it can be something not dangerous. 

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:(

On ‎4‎/‎2‎/‎2019 at 10:17 AM, bombsh3ll said:

Hi Kkirsten,

 am sorry you are dealing with all this at such a young age. Where are you living? Have you seen a respiratory specialist? Unless there is something wrong with your pulse oximeter or your peripheral blood flow is very poor (beta blockers can worsen this) you should not regularly be having O2 sats below 94% if you are otherwise healthy. 

With dysautonomia, our blood has enough oxygen in it. We just either don't have enough blood, or we have enough but it is pooling and not getting up to our brains. Even so, what we have & where it is, it is adequately oxygenated unless there is something else wrong. 

For what you describe respiratory tests such as spirometry for asthma, possible CT pulmonary angiogram to rule out a PE (this is something you may struggle to get if D-Dimer is negative but you are a young female with chest pain, low O2 sats and history of OCP use so it is reasonable to consider)  might be helpful and you could ask your prescribing physician to review your beta blocker as you are bradycardic and they are also not a great mix if you do have asthma/airway disease. 

Many people with dysautonomia report benefit with beta blockers but I personally am not a fan of them as they reduce cardiac output (even in healthy people) and drugs such as ivabradine & some calcium channel blockers which asthmatics tend to be prescribed in place of beta blockers. 

Beta blockers can also cause orthostatic hypotension which you mention having. 

Yes, they can lower a rapid heart rate which doctors & even many patients with POTS seem to see as the main focus, but it is more about how you feel and how well you function that matters, indeed the tachycardia in POTS is often (but not always) a secondary compensatory mechanism to the underlying problem (low venous return & stroke volume) - and additionally can be a symptom of a PE but that would not be orthostatic in nature. 

Please continue to advocate for yourself with your doctors, in particular express your concerns about a possible PE. 

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..

On 4/1/2019 at 10:51 AM, Pistol said:

@kkirsten - I have the exact same symptom!!! Although I do have a form of angina this feels different. I had it off and on for years, CXR and EKG is always normal. I went to a chiropractor and they felt it was a rib that came out of place and did an adjustment but hat did not bring relief. Since the shortness-of-breath remains and my PO2 runs low ( 94-95% ) I am scheduled to do a CT of the chest. 

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.

On ‎4‎/‎1‎/‎2019 at 5:58 PM, Peter Charlton said:

Did the year long cough also start "BEFORE" beta blockers?

My year long cough started the day I went on beta blockers, in fact when I went to my GP about my cough he looked up Dr Google the same as we all do and said, "stop taking the beta blockers. Whilst the cough went from really really bad to just annoying, it remained for a full year later.

I too also got the variable blood oxygen, even the NHS Star Trek style monitor confirmed my low blood oxygen. I also got variable heart beats as well, ie I could be just sitting doing nothing and it would be beating at 140, but other times 54.

These symptoms too settled down after a year, so I am guessing they are related. In fcat my theory is that beta blockers disrupt the Autonomic Nervous System, putting things like smooth muscle constriction control out of balance so your heart vessels constrict, as do the airways in your lungs thereby triggering a cough reflex.

My ANS seems to have settled down now, but I think I am left with permanent oxygen deprivation damage to my nervous system as I still have the drunk feeling, the lack of co-ordination and the bad peripheral neuropathy that all cane the day I started beta blockers for Ventricular Tachycardia.

This is all conjecture of course as its all too much for anybody in the NHS to get their heads around so they blame it on anxiety which I have never had. 

(See one of my all night oxygen graphs top graph is oxygen which you can see spends hours below the 88% danger line, and the bottom is heart beat). (Second graph is how it is always now since my ANS settled down).

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..

On 4/1/2019 at 4:24 AM, StayAtHomeMom said:

Does an anti-inflammatory help the pain? 

I have had lots of "heart burn" they tried to say was acid reflux. Scope came back clear. It has something to do with eating for me because I went Keto in October and haven't had it since. When I say heart burn it is that acid in the back of your throat. Rolaids with gas relief helped quite a bit there. 

How long before your doctor's appointment to get checked out?

In the beginning for me I had a lot of symptoms that seemed terrifying but as time has gone by and the more I have learned they are not as scary. 3 years and counting... it helps that the testing comes back normal and I get to see my tests not just the results. 

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? 😪😪

On 10/11/2018 at 12:16 AM, yogini said:

110 while standing is actually within the normal range - even people without POTS could easily have that.  And the decrease while lying back down is normal too.  The rest of us with POTS aren't normal as it often takes a wile for my HR to settle down.  Unless your dr tells you to be scared don't be!  You can hopefully fire out what is causing your dizziness and go from there.  

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).

On 10/4/2018 at 9:43 AM, ShiEksdee said:

I have resting tachycardia (somewhat more controlled with meds). Heartrate went from 90-ish to 159 very quickly on TTT (this is "normal" for me which makes me feel awful). Stood upright for a bit after a near faint on the TTT coming up, but after standing a lil my bp and heartrate dropped drastically and I fainted. Instantly diagnosed with NCS. One of the lil nurses vaguely heard of POTS and think I have that too but the main ones over it don't really know much about it. (I suspect I have it) Was never given any meds on the test. This is just my normal function of everyday life. Always feel awful when I do anything but sit and lean to one side, changing positions is torture, and if I don't sit/lean or lie down when I start feeling worse I will drop like a swatted fly. My heart rate does take a bit to settle down after I sit if it goes up fast, so I don't experience the drop unless I faint.

That being said I'm glad your TTT wasn't that stressful for you because to me it was the worst test I've ever had in my life and it took me over a month to stop having faint-every-day on just standing for some seconds. I guess it really wore out my body and nerves.

I've been begging for this test for ELEVEN YEARS though, ever since I first suspected I had something similar to POTS so at least I'm glad I got my own answers even if docs didn't know much about it. Happy docs finally listened to me enough to get me this test done.

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:)

On 10/3/2018 at 12:39 PM, yogini said:

My HR went to 155 without meds. My base rate is probably 75-80. For me once I am up my HR does not calm down for a while after I sit or lie down. Maybe that’s what your nurse meant, if you went back down to 60 right away.  

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 !

On 10/2/2018 at 7:09 PM, dancer65 said:

Yes I had extreme changes in BP and HR resulting in me fainting, a few times hurting myself quite badly but it could have been worse !  It has improved on midrodine but  I can still have huge swings especially when I am getting ill . 

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..

27 minutes ago, Pistol said:

Hi @kkirsten - welcome to this forum! -- When I first started with my POTS symptoms I noticed the palpitations the most. BB made me feel like a million bucks as well! But it did not take the PVC's away. I tried Metoprolol, Bystolic and Propanolol - what ended up helping to get rid of them was Carvelidol  It is a beta and alpha blocker, so it has additional properties. -- After 8 years of POTS I had my ferritin level checked recently and it was very low at 4. Since then I have supplemented iron and my recent check was normal. No change in POTS symptoms though. However - I am fairly stable with my cardiovascular meds unless I have a triggered flare. Then I need IV fluids. When in a flare the PVC's came back with a vengeance and IV fluids give immediate relief - but not in the form of a fluid bolus. That has proven to be ineffective for ALL of my symptoms including hypertension and hypotension. I improve rapidly with fluids given at 125 ml/hour . --- In my case rest also relives the PVC's. 

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:)