Other Heart problems - tired of being treated like a hypochondriac

[BlueBerry6999]

Had a sleep study, yet?

No, not yet... how does that work?

 

[DarkVixen]

A fitness tracker is a great idea! I've never been afraid of a heart attack, but the heart rate trackers they have on the tread mills are really bad. My heart rate usually gets down quite easily after cardio, which shows me that I am in fact quite fit. The problem is not even during cardio. I usually feel great and fit while running, but then afterwards I get brainfog and feel extremely tired.
I'm getting lots of tests done atm because of my PCOS. I have very high testosterone levels but I don't have any of the other PCOS indicators and the specialist told me that it's a mistery why I have it in the first place. Anyway, my husband said something interesting: that with that much testosterone, it's like I'm constantly doped and maybe don't feel that I'm overexerting myself when working out, which obviously isn't healthy.
I'll make sure to get a tracker in any case.

Interesting about the heart rate at night! That makes sense... it's what I meant with it not being "normal" anxiety, as in the anxiety you can clearly feel since it's also in your mind. I mean, PTSD shows up in scans - so it's not surprising that it must be somewhere in the body and haunt us when we least expect it.

Yeah I get you with the "my body" is suffering anxiety but my brain is oh its a lovely sunny day. So it also made sense to me when I learned that about chronic anxiety and sleeping heartrate. It also explains why people with anxiety wake up tired.

 

[Friday]

No, not yet... how does that work?

Talk with your GP for a referral. They’re craaaaaaazy common, used to both diagnose many many things, as well as to confirm details about existing diagnoses, and very useful.

Basically? You’re hooked up to a robot-suit-thing (think bedecked in rainbow wires, not TinMan/Dahleks) that monitors your …everything… as you’re preparing to sleep, sleeping, and waking up.

- Most of the time they’re just an overnight, 7pm to 7am, kind of thing… in something more like a hotel room than a hospital room.

- Sometimes, if they’re looking for something specific (that comes with portable devices to measure that thing) they send you home with “gear”… but the first one is nearly always in clinic. Because they’re looking at everything.

***

I once spent a month in a sleep clinic because the average/normal sleep study I did produced some wacky results, so they asked if ai’d mind staying on? So it became a weekend, then week, then month. That’s being PART OF a sleep study / part of their research; rather than HAVING a sleep study done, where they’re studying your sleep (and heart/lungs/brain/etc.). Insomnia is no worries, as that still provides a whole helluva lotta useful data/numbers for them, although if you don’t sleep at all they might book you for a 24-72hr sleep study, to see what happens when you finally do sleep -as well as- what’s happening when you’re trying to sleep but cannot.

 

[BlueBerry6999]

Talk with your GP for a referral. They’re craaaaaaazy common, used to both diagnose many many things, as well as to confirm details about existing diagnoses, and very useful.

Basically? You’re hooked up to a robot-suit-thing (think bedecked in rainbow wires, not TinMan/Dahleks) that monitors your …everything… as you’re preparing to sleep, sleeping, and waking up.

- Most of the time they’re just an overnight, 7pm to 7am, kind of thing… in something more like a hotel room than a hospital room.

- Sometimes, if they’re looking for something specific (that comes with portable devices to measure that thing) they send you home with “gear”… but the first one is nearly always in clinic. Because they’re looking at everything.

***

I once spent a month in a sleep clinic because the average/normal sleep study I did produced some wacky results, so they asked if ai’d mind staying on? So it became a weekend, then week, then month. That’s being PART OF a sleep study / part of their research; rather than HAVING a sleep study done, where they’re studying your sleep (and heart/lungs/brain/etc.). Insomnia is no worries, as that still provides a whole helluva lotta useful data/numbers for them, although if you don’t sleep at all they might book you for a 24-72hr sleep study, to see what happens when you finally do sleep -as well as- what’s happening when you’re trying to sleep but cannot.

Oh wow! That sounds only slightly frightening!
I'll see if they do that in my country as well... From what I've heard I feel like people are much more open towards things like that - doing the effort to really check how someone's doing, testing alternative treatment methods etc. in the US.
Here, doctors are really minimalistic. They run the usual tests and if they're negative, they send you home and say it's in your head.
My doctors and my therapist never even mentioned once EMDR as treatment for PTSD.

Anyway, thanks for the tip!

 

[Friday]

I'll see if they do that in my country as well... From what I've heard I feel like people are much more open towards things like that - doing the effort to really check how someone's doing, testing alternative treatment methods etc. in the US.

If you’re in Western Europe, they’re very common, most hospitals -especially in major cities- have either sleep clinics or sleep labs in respiratory* clinics; Eastern Europe, not so much! So there is a lot of “medical tourism” into Germany, France, Switzerland, UK, Finland, Belgium, etc. from the Baltic, Balkan, former Soviet bloc, etc.

* Roughly 175 million Europeans have obstructive sleep apnea, according to an presented by ResMed at the European Respiratory Society's (ERS) annual ERS Congress in Paris

Best of luck!

 

[BlueBerry6999]

If you’re in Western Europe, they’re very common, most hospitals -especially in major cities- have either sleep clinics or sleep labs in respiratory* clinics; Eastern Europe, not so much! So there is a lot of “medical tourism” into Germany, France, Switzerland, UK, Finland, Belgium, etc. from the Baltic, Balkan, former Soviet bloc, etc.

* Roughly 175 million Europeans have obstructive sleep apnea, according to an presented by ResMed at the European Respiratory Society's (ERS) annual ERS Congress in Paris

Best of luck!

That's crazy!
I had sleep apnea once because I used an inhaler that was way too strong for me. It was really scary! I can't imagine just having that on a regular basis.

Thanks for the info, I wasn't aware that this is such a common thing. I'll see if I can get more information about it in my area.

 

[PerfectEmpire]

Just posted this reply to another thread, and thought it fit here as well. Your symptoms sound a lot like my own! I had the coldness and chest pain and everything.

I have POTS, and I also have a mitral valve prolapse with mild regurgitation. I have had soooo many traumatic doctors appointments and ER visits, and I know how it is. Keep advocating for yourself. Take breaks, and join online support groups for chronic illness (specific or not specific) and keep going. You are not alone. I know how depressing and horrible this is. The health system can do a number on your head.

If you have not already and I were you, I would ask for a tilt table test and the ability to read the report myself (I have seen in my POTS support groups that many doctors don't seem to understand the diagnostic criteria even though it is quite explicit as written by the American College of Cardiology).

You can also do a preliminary test at home: Lay down for 10 minutes. Take your heart rate. Stand up. Take your heart rate. Ideally do this with a pulse oximeter or fitness watch so that you can see how the heart rate fluctuates, and take photos. If your heart rate goes up by 30bpm or more or is 120bpm or higher when you go from lying to standing, show this to the doctor with a print-out of the POTS diagnostic criteria, and ask for a tilt table test or to be tested by them in the office (same as at home, but with blood pressure monitoring too).

Also see if your feet and/or hands tend to turn red or purple when standing (e.g., when you get out of the warm or hot shower, what color are your feet? for many of us we feel like a shower is a marathon and have to lay down after, and our feet are purple from blood pooling).

Regardless of what is going on, I believe you. Keep advocating for yourself, and keep going. You are not alone.

Also, I saw that you mentioned that you had COVID, and POTS can be a manifestation of long-COVID. So you have even more cause to get tested for it, in my opinion.

Have you had a tilt table test or otherwise been assessed for postural orthostatic tachycardia syndrome (POTS)? It is a form of dysautonomia (autonomic neuropathy/dysfunction of the autonomic nervous system) that is often missed by cardiologists and neurologists, but awareness has been increasing due to its association with COVID. The diagnostic criteria can be found at dysautonomia.org and the American College of Cardiology, and is essentially an increase in heart rate of at least 30 bpm (or more than 120 bpm) when transitioning from lying to standing.

There is evidence that POTS is an autoimmune condition as patients have been found to have autoantibodies against specific nervous system receptors. Basically, the autonomic nervous system (fight/flight) cannot function properly and get the blood vessels to pump blood back up to the heart and brain, so the heart beats faster to compensate.

Given the research into childhood trauma and its association with autoimmune diseases in adulthood and other research on PTSD and autonomic dysfunction, it would make sense for it to be possible that there is overlap in these patient populations.

More importantly, POTS is often misdiagnosed as anxiety. One study showed that when mental anxiety was measured independently from physical anxiety, POTS patients actually scored lower (!) on mental anxiety than the non-POTS patients. But they physically present as more anxious due to a dysfunctional autonomic nervous system.

Basically, what I'm trying to say is that if meditation, therapy, and other stress reduction techniques are not working, this may not be in your mind, and you may want to be assessed for autonomic dysfunction, specifically POTS.

I was misdiagnosed for a long time as we assumed my issues were all PTSD related and more controllable in my head, and many doctors just didn't have the awareness to assess and diagnose me properly and/or were misogynistic. My head got a lot better and even during periods where my PTSD scores were consistently low (remission), I still was very ill with POTS symptoms, including the tachycardia for which the condition is named.

 

[Charbella]

If you feel your doctors aren’t treating your heart symptoms seriously because of your PTSD condition, isn’t the easy solution to see another provider and not tell them of the PTSD diagnosis? Personally only my regular physician and therapist know and if I felt my regular physician was in anyway holding it against me I’d find a different doctor and not tell them about it. Can you see a heart doctor without a referral to one? How could you be seen by someone who doesn’t know your mental health status and therefore couldn’t decide that it’s the reason for your complaint?

 

[BlueBerry6999]

Just posted this reply to another thread, and thought it fit here as well. Your symptoms sound a lot like my own! I had the coldness and chest pain and everything.

I have POTS, and I also have a mitral valve prolapse with mild regurgitation. I have had soooo many traumatic doctors appointments and ER visits, and I know how it is. Keep advocating for yourself. Take breaks, and join online support groups for chronic illness (specific or not specific) and keep going. You are not alone. I know how depressing and horrible this is. The health system can do a number on your head.

If you have not already and I were you, I would ask for a tilt table test and the ability to read the report myself (I have seen in my POTS support groups that many doctors don't seem to understand the diagnostic criteria even though it is quite explicit as written by the American College of Cardiology).

You can also do a preliminary test at home: Lay down for 10 minutes. Take your heart rate. Stand up. Take your heart rate. Ideally do this with a pulse oximeter or fitness watch so that you can see how the heart rate fluctuates, and take photos. If your heart rate goes up by 30bpm or more or is 120bpm or higher when you go from lying to standing, show this to the doctor with a print-out of the POTS diagnostic criteria, and ask for a tilt table test or to be tested by them in the office (same as at home, but with blood pressure monitoring too).

Also see if your feet and/or hands tend to turn red or purple when standing (e.g., when you get out of the warm or hot shower, what color are your feet? for many of us we feel like a shower is a marathon and have to lay down after, and our feet are purple from blood pooling).

Regardless of what is going on, I believe you. Keep advocating for yourself, and keep going. You are not alone.

Also, I saw that you mentioned that you had COVID, and POTS can be a manifestation of long-COVID. So you have even more cause to get tested for it, in my opinion.

Oh god thank you so much for this!!! This sounds so much like me!!
I don't even shower hot anymore, but I definitely get an increased heartrate when taking a hot bath. I often end up with a headache and nausea after taking a bath.

They actually did a tilt test and it was normal. I felt fine after standing up, but got dizzy when standing for too long. I definitely get dizzy when I stand up too fast, but during the tilt test everything was rather slow, so I don't know how accurate it is. They mentioned that my blood pressure is rather low, but said it was no problem.

Lately, the symptoms have been worse but I don't know if it's because of my medication. I've been taking an anti-psychotic medication to be able to sleep because I couldn't sleep for almost a month due to the adrenaline rushes and heart palpitations.
With the meds, I'm deeply asleep, like much deeper than usual. Often it feels like I almost forget to breathe, which I know doesn't sound good but at least I'm not sleep-deprived anymore.
I've had it for weeks now that my heart starts racing when I wake up - even when I'm still lying down. I have to wait for 10 minutes or so for my body to wake up to even be able to stand up - something I never had to do before all of this. Then when I do stand up, my heart starts racing again as if I'd run a marathone.
I also get heart palpitations when drinking caffeine, although it's only black tea I drink, never coffee.

I definitely need to check if my feet turn purple. I've noticed blotching before. Also sometimes my lower legs swell up when I'm sitting down for too long. Then I need to put my feet up to make them go back to normal. Lately my feet and hands always fall asleep.

The weird thing is that since the symptoms got worse (the fatigue and dizziness after exercises and the problems at night) I haven't had the cold feeling and itchiness anymore when working out. Not sure if that makes sense?

Anyway, I'm sooo grateful for your comment! I'd never heard about POTS, but I will ask about it at my next appointment, which is in two weeks.

 

[BlueBerry6999]

If you feel your doctors aren’t treating your heart symptoms seriously because of your PTSD condition, isn’t the easy solution to see another provider and not tell them of the PTSD diagnosis? Personally only my regular physician and therapist know and if I felt my regular physician was in anyway holding it against me I’d find a different doctor and not tell them about it. Can you see a heart doctor without a referral to one? How could you be seen by someone who doesn’t know your mental health status and therefore couldn’t decide that it’s the reason for your complaint?

My next appointment is with a cardiologist. She's in the same building though, so I'm pretty sure she'll know.
What I thought was weird is that my physician scheduled an appointment with me to discuss my condition, but that appointment is before the one with the cardiologist. This sounds to me like she doesn't believe at all that anything will show up.

But now that I have the information about POTS, I will definitely tell that to my physician and insist on more tests if necessary.
She's actually not a bad person at all and I never got the sense that she judges people for mental health issues. Upon hearing about my problems, she was quick to schedule a whole lot of tests, including the tilt test, blood works and the app. with the cardiologist.
I guess she's just a textbook physician who thinks that anything that doesn't show up on the usual tests means it must be a mental health issue.
I'll wait for my next appointment and if that isn't satisfactory, I'll definitely consider seeing someone else.

 

[BlueBerry6999]

I'm starting to feel a bit anxious about the whole thing now... before I wasn't anxious at all - despite the heart palpitations at night.

Since my therapist assumed the palpitations were caused by stress and I've been having intense bipolar episoded lately, I got prescriped Seroquel so I could sleep. A psychiatrist told me to take it every single night and not just during the week like I first thought I would.
Now, I get palpitations even during the day, basically constantly. I don't know if it's because of the meds or because I went to the gym last Sunday and probably overexerted again.
Also at first the meds stopped or suppressed my heart from racing at night, but the two previous nights I got the palpitations despite taking the meds.
Then last night I felt anxiety, basically I thought I was going to die but I don't know why. I don't know if my brain just needed a reason for the increased heart rate, or if the feeling was caused by a bipolar surge, but I had that stupid notion that I was going to die.
Then when I lay in bed my body got really relaxed, probably due to the meds, but up to a point where I thought I couldn't move anymore and couldn't feel my hands and feet or breathe. My brain was still active and told me not to fall asleep because I would suffocate. And I felt like I didn't breathe, but I'm not sure if I imagined that. I do think I had hypoventilation once before about a week ago, but I'm not 100% sure if it was real or just sleep paralysis. I'm usually not panicky at all, not even when my heart is racing. But last night was different.
I ended up not sleeping most of the night or having sleep paralysis and dreaming or hallucinating about suffocating. Woke up gasping for air.
I'm not sure if I should be taking seroquel with the ongoing issues, but it's a low dose and I've been taking it continuously for about two weeks now, so I don't know why it should suddenly be a problem.

I don't want to change anything now or make a drama out of nothing so close to the cardiologist appointment.

 

[PerfectEmpire]

I'm starting to feel a bit anxious about the whole thing now... before I wasn't anxious at all - despite the heart palpitations at night.

[...]

I don't want to change anything now or make a drama out of nothing so close to the cardiologist appointment.

I am so glad you are seeing a cardiologist soon! Make sure that you read your own tilt test results (the numbers, not just the conclusions), because many patients in my support groups have doctors who for whatever reason do not understand the diagnostic criteria and told them the results were normal when they had POTS. I am not sure the source of the confusion but it seems to be that they confuse it with other forms of orthostatic intolerance, such as orthostatic hypotension, which it is not.

The fear of suffocating is something that I have experienced and it is very scary. Adrenaline dumps at night are a thing...so is air hunger. It's all stuff I've experienced (including waking up gasping for air), and I know how scary it can be, especially with no clear explanation!

One thing that has helped me is to have a pulse oximeter handy so that I can see that my oxygen is normal and that lets me know I am going to be okay. I keep that and a blood pressure monitor near my bed and check them. I also do acupressure for the vagus nerve (usually I resort to the area between thumb and index finger) which seems to help a lot while I wait for medicine to kick in. It is a good acupressure point for nausea.

I recently learned that which side we lay on when we sleep affects how noticeable heart palpitations are! Apparently lying on the right side is better for palpitations than lying on the left. But lying on the left is better for GERD. I have both and so it's a constant battle!

I hope that you get answers quickly and easily, and definitely would be interested in any updates!