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kkirsten

Asthma, Heart, or Dysautonomia?

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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?

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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. 

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I know you said you started the BB after the chest heaviness, but have you been tested for asthma or any other type of pulmonary issue? Taking propranolol can make those conditions worse. Perhaps the virus you had triggered something?

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@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. 

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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).

 

 

 

Worst Oxygen level 002.jpg

2425th sept stayed high all night, feel good in the morning Printing SpO2 Report.jpg

Its anxiety.jpg

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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! 

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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..

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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.

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Hi Kkirsten,

I 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. 

B xxx

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3 hours ago, kkirsten said:

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! 

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. 

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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..

 

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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:(

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@kkirsten - I have early onset AS ( ankylosing spondylitis ) and cannot take NSAIDS due to GI problems. I am also on BB. What helps me tremendously - both long-term or in a painful flare - is Turmeric. Even my very modern-medicine-practicing PCP, who is generally not a fan of herbal supplements,  is aware of the proven anti-inflammatory effects of it. If you try it make sure you get a good quality product that contains black pepper ( this must be added to ensure proper metabolism of the healthful properties, it raises the blood level of the turmeric tremendously ). Mine also contains ginger to prevent any possible stomach effects ( which I have not experienced while taking Turmeric ). As a side note: I take many meds so whenever I add ANY supplement I check for compatibility by asking my pharmacist or doctor ). 

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13 hours ago, kkirsten said:

Yet, with propranolol I don't think I can have ibruprofen:(

Kkirsten,

The only reason ibuprofen is recommended to be avoided with beta blockers is that the latter were historically, & often still are, prescribed for hypertension. People on any BP lowering meds are advised to avoid ibuprofen & other drugs in its class as these can raise blood pressure, antagonising the effects of the BP med. 

In general, if you are taking the beta blocker for another indication and are not hypertensive, ibuprofen should not pose a problem. (check with your doctor that there are no other contraindications personal to you).

I actually find that ibuprofen provides a tiny bit of relief from my lightheadedness taken sparingly as it helps retain sodium and fluid in the short term. 

Best wishes,

B xxx

 

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