Blood clot?

[kkirsten]

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

[MomtoGiuliana]

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.

[KiminOrlando]

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. 

[Pistol]

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. 

[kkirsten]

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

[kkirsten]

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

[kkirsten]

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

[bombsh3ll]

 

5 hours ago, kkirsten said:

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

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

[kkirsten]

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

[bombsh3ll]

2 hours ago, kkirsten said:

I have been given Zantac and tried that for 6 months

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

[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

[JimL]

On 4/27/2019 at 12:08 PM, kkirsten said:

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

GERD can cause breathing problems, causing asthma and/or aspiration pneumonia.