When is it ok to ignore "Life threatening" symptoms

[MeSci]

One of my recent symptoms is that I'm experiencing a sudden onset rapid heartbeat immediately upon laying down to go to bed. It's gone super quick. I've tested myself at 70 bpm five seconds before lying down. Retested at 90 bpm within 60 seconds of laying down... and right back to 70 bpm in the next 60 seconds. I can feel it pounding in my chest. My friends and co-workers tell me that it's irregular heartbeat and should go immediately to the doctor. But, really? While it doesn't seem simple OI or simple POTS... it does seem like it's something that if people had a regular heartbeat of 90 bpm they wouldn't worry that much about them. So if mine climbs suddenly, but also drops suddenly - and it only happens while I'm laying down - well, it's not like I'll fall because I'm dizzy while laying in bed.

But it's hard to figure it all out.

There are threads on this symptom, e.g. this one.

 

[MeSci]

I wish I could get to ER/A&E as easily as some of you. But when I had that first episode of what I now know was severe hyponatraemia, my GP failed to visit me and diagnosed a panic attack over the phone. When I called the ambulance, they came to my house but asked for my doctor's phone number. He told them it was a panic attack and they consequently ignored my insistence that it wasn't. I didn't even have the energy to tell them to go in the next room and look at my graduation certificates on the wall, or get my bp monitor (theirs wasn't working, so they MADE UP two readings!!!). They never took me to hospital but left me alone, seriously ill, unable to contact friends as they did not reply on their phones (probably at work).

Then when I DID get taken to A&E/ER the second time, my suggested (correct) diagnosis was ignored. They didn't even test my blood sodium until I was rushed back after being sent home.

How can you stand your ground when you can hardly speak and are even having trouble breathing?

And no - the NHS is not always that bad, but all too often it is.

It may be because I have a long history of anxiety (been typing up some of my records). I eventually found that I could have largely avoided almost 60 years of anxiety by eating the right food...although a horrible childhood had also contributed. I have now reduced the anxiety greatly through correct diet. Could have avoided all those tranquillisers and other drugs too.

 

[MeSci]

It's occurred to me that the title of this thread should be directed at doctors as much as at us!

 

[PNR2008]

I do know how you feel, so many times especially at the beginning of CFS/ME, I dealt with such prejudice and was given the runaround. I felt just as bad leaving as I did arriving at docs or ER.

Our own experience makes us what we are. I know I can be so sarcastic even in humor but it's obviously anger motivated. So what ! I'm human. I've been treated badly many times. Yes @MeSci how can we stand up for ourselves when we can't even speak? Don't stand, fall on the floor! Sometimes that gets their attention and many times that's the start, we need "attention".

Sorry for the rant but it's a sin the way we've been treated and most all of us have horrible stories to tell, too many stories. It disgusts me and breaks my heart.

 

[Valentijn]

Regarding breathing problems ... something I've noticed in a sample of 23andMe data from 39 ME patients is that 16 of us have very rare mutations on genes involved with reactions to hypoxia. At least 6 of those are missense mutations, though I haven't checked to see how we compare to the controls for those SNPs, nor looked at the rest of those genes yet.

 

[worldbackwards]

It's funny that, when I had problems breathing (largely exacerbated, I eventually figured out, from living with smokers), I never even considered going to a doctor. And I was lying flat on the ground with no pillow half the time to try and open my airway. It becomes a kind of conditioning - if they tell you to bugger off often enough and treat you like you don't exist, why would you return?

 

[xchocoholic]

It's occurred to me that the title of this thread should be directed at doctors as much as at us!

Hi @MeSci and others. (I'm sorry. I tried but I'm too tired to write to everyone individually. Thanks for all the responses tho. They've all helped tremendously. )

I can't find this info on the web. When googling life threatening symptoms all I can find is to go to the er or call 911. I can't find any practical advice on how to deal with re-current life threatening symptoms.

I was told by a nurse that this was cya, cover your ass, standard protocol, for medical professionals. Understandably. I would do the same if a stranger was asking me. But when patients are experiencing these regularly we need practical guidelines.

The medical advice from the nurse I spoke with concerning my dd's recurrent anaphylaxis was to self treat with Benadryl at first. If no response and breathing was still impaired, use an epi pen. And call 911 as a last resort.
Actually we came to this conclusion first. Then I asked the nurse if it was ok.

I was told something similiar by a nurse when it came to my chest pain. For several months, I was getting the exact same pains and numbness down my left arm that heart attack victims get.

My heart had been thoroughly evaluated, to my knowledge, the first time this happened, so I was told not to call my doctor anymore or go to the ER. And I was told that if you call your doctor complaining of heart attack symptoms, they have to give you the cya response.

That was about 10 years ago and I'm still alive. My me/cfs extra limited life anyways.

So knowing the instructions for "life threatening" symptoms are part of a cya protocol and partly DEAD serious where does that leave us ?

Should we use results from instruments like hr and bp monitors INSTEAD of looking at symptoms ? I don't know.

Diabetics are trained to look at their glucose and insulin levels to determine severity. Would this help ? I have low blood glucose.

I'm not medically trained so I don't know other options.

Currently I'm self treating to the best of my abilities and casually, without a lot of concern, watching my symptoms to see if they worsen. I'm not dead yet.

Tc .. x

Ps. I guess I should consider myself lucky that doctors have been willing to evaluate and treat my symptoms. I never realized others who were presenting with "life threatening" symptoms weren't.

 

[MeSci]

Regarding breathing problems ... something I've noticed in a sample of 23andMe data from 39 ME patients is that 16 of us have very rare mutations on genes involved with reactions to hypoxia. At least 6 of those are missense mutations, though I haven't checked to see how we compare to the controls for those SNPs, nor looked at the rest of those genes yet.

My own breathing problem was caused by hyponatraemia - not enough sodium to operate the respiratory muscles properly, or any other ones. They were all in spasm.

I found that a sedating (anticholinergic) antihistamine - diphenhydramine - reduced the tremor while I got my sodium levels back up. I found out purely by chance. I then spent months (at least) researching to find out what was going on and what to do about it.

I now have a glucose monitor, which I use when ill, along with my bp/pulse monitor and thermometer, but I wish I had a way to measure blood and urine electrolytes.

 

[Valentijn]

My own breathing problem was caused by hyponatraemia - not enough sodium to operate the respiratory muscles properly, or any other ones. They were all in spasm.

Several of the genes involved are Hypoxia Inducible Factors, where hypoxia triggers the body to respond in a specific matter to deal with it. So maybe we respond a little differently (dysfunctionally?) to hypoxia.

 

[Valentijn]

Should we use results from instruments like hr and bp monitors INSTEAD of looking at symptoms ? I don't know.

I bought a pulse oximeter after serious oxygen issues one night resulted in me turning a bit blue for a while. I think oxygen saturation is a good guide for how serious my breathing problems are. If it's a minor problem, laying down will often help, and will let my heart rate fall a bit as well.

If it's more serious, I need to sit up while leaning forward a bit, and take one of the drugs which help with my pulse pressure (Strattera or Yohimbe) and accept that my heart rate is going to be too high until those kick in. And that I might not be able to sleep after taking them, though this is the one situation where I find I can sleep while taking them.

If my oxygen saturation is staying too low despite being in the best position for it and taking the meds which usually help with it, I think I'd need to go to an urgent care clinic or ER to get some oxygen. Maybe IV fluids would also help at that point, since my low oxygen saturation is usually due to low pulse pressure, which could be the result of low blood volume.

 

[MeSci]

Several of the genes involved are Hypoxia Inducible Factors, where hypoxia triggers the body to respond in a specific matter to deal with it. So maybe we respond a little differently (dysfunctionally?) to hypoxia.

The ambulance staff used a pulse oximeter on me a few times and IIRC I was keeping my oxygen levels up OK, but it was very hard work, and exhausting. I lost several pounds in weight over 2-3 days, presumably through the enormous amount of calories my spasming muscles must have been burning - for 8 hours continuously.

When I was admitted to hospital on the second hyponatraemic episode I was begging for more antispasmodic medication and a sleeping tablet, as the quinine they had given me earlier wore off and I couldn't sleep due to the spasms returning (they were painful). I asked the nurse if I could have diphenhydramine or other sedating antihistamine, as that would have reduced the spasms AND helped me sleep, but was advised that they didn't hold stocks of those! So eventually I had to settle for an unnecessarily strong 'z-type' sleeping pill, which didn't arrive until the early hours of the morning.

It struck me how ludicrous the situation was - I was in hospital, having been admitted as an emergency (eventually) but wasn't being given the saline I needed, or a muscle relaxant, or a suitably-mild sleeping pill. If I had been at home I could have taken oral saline and a sedating antihistamine.

In future I want to be at home.

 

[MeSci]

The ambulance staff used a pulse oximeter on me a few times and IIRC I was keeping my oxygen levels up OK, but it was very hard work, and exhausting. I lost several pounds in weight over 2-3 days, presumably through the enormous amount of calories my spasming muscles must have been burning - for 8 hours continuously.

When I was admitted to hospital on the second hyponatraemic episode I was begging for more antispasmodic medication and a sleeping tablet, as the quinine they had given me earlier wore off and I couldn't sleep due to the spasms returning (they were painful). I asked the nurse if I could have diphenhydramine or other sedating antihistamine, as that would have reduced the spasms AND helped me sleep, but was advised that they didn't hold stocks of those! So eventually I had to settle for an unnecessarily strong 'z-type' sleeping pill, which didn't arrive until the early hours of the morning.

It struck me how ludicrous the situation was - I was in hospital, having been admitted as an emergency (eventually) but wasn't being given the saline I needed, or a muscle relaxant, or a suitably-mild sleeping pill. If I had been at home I could have taken oral saline and a sedating antihistamine.

In future I want to be at home.

Forgot to mention the nausea. A sedating antihistamine would have reduced that too. I just had to endure it.

 

[xchocoholic]

Hi @MeSci

So sorry to hear what you've been through. I'd stay home too if I knew what to do. Actually that's why I started this thread. I'm staying home with what are considered "life threatening" symptoms because apparently, in some cases, they're exaggerating the importance of these. Only I'm not at all sure when my "life threatening" symptom is going to nail me. And I can't find this on the web.

(Btw at this point I'm having the "life threatening" symptom of swelling around my mouth and throat. This started happening a couple of years ago with swelling around my lower lip and the sensation that my throat is closing up and last week progressed to swelling above my upper lip. I eliminated the source, anything fermented. When this first happened a few years ago, my allergist gave me an epi pen and told me to avoid my triggers. Triggers now include probiotics.)

If I understand, they're refusing to treat you because you have me/cfs and they're blaming you for treating yourself.

It sounds like they don't appreciate your input either. I never had input so I can't relate but I wonder why this is happening to you ? Is it normal for medical professionals to discount the input of people who actually speak their language ?

Tc .. x

 

[xchocoholic]

I bought a pulse oximeter after serious oxygen issues one night resulted in me turning a bit blue for a while. I think oxygen saturation is a good guide for how serious my breathing problems are. If it's a minor problem, laying down will often help, and will let my heart rate fall a bit as well.

If it's more serious, I need to sit up while leaning forward a bit, and take one of the drugs which help with my pulse pressure (Strattera or Yohimbe) and accept that my heart rate is going to be too high until those kick in. And that I might not be able to sleep after taking them, though this is the one situation where I find I can sleep while taking them.

If my oxygen saturation is staying too low despite being in the best position for it and taking the meds which usually help with it, I think I'd need to go to an urgent care clinic or ER to get some oxygen. Maybe IV fluids would also help at that point, since my low oxygen saturation is usually due to low pulse pressure, which could be the result of low blood volume.

Hi @Valentijn

Sorry to hear you're going through this but I'm impressed that you've figured out what to do. Would having an oxygen tank at home help ? Tc .. x

 

[Valentijn]

Hi @Valentijn

Sorry to hear you're going through this but I'm impressed that you've figured out what to do. Would having an oxygen tank at home help ? Tc .. x

With pacing and the right meds, my oxygen is fine 99% of the time. I just get episodes once in a while where it's constantly trying to drop, and my heart rate is rising to compensate. And even that's okay ... but sometimes my heart rate stops rising to compensate, or it it just isn't sufficient to combat the low pulse pressure.

 

[MeSci]

If I understand, they're refusing to treat you because you have me/cfs and they're blaming you for treating yourself.

It sounds like they don't appreciate your input either. I never had input so I can't relate but I wonder why this is happening to you ? Is it normal for medical professionals to discount the input of people who actually speak their language ?

They are not necessarily refusing to treat me - they are just insisting on inappropriate treatment and failing to provide appropriate treatment. And this was for the hyponatraemia. I don't expect appropriate treatment from health professionals for ME itself as I know they haven't a clue.

Yes, it would appear that it is normal for health professionals to ignore input from patients, even well-qualified ones. They act more like civil servants with their official check-lists, not really thinking for themselves, apart from a precious few.

The funny thing is, that I was looking forward to getting my degrees so that I could talk the doctors' language, only to find after graduating that I was now talking way over their heads. My Masters degree vs. their Bachelors' degrees!

Off to see the doc now. Wish me luck...

 

[MeSci]

Off to see the doc now. Wish me luck...

OK, judging by how seriously the doc took my atypical brain malfunctions (two days last week) and by the fact that I am getting a brain scan out of it, so even if they weren't TIAs I may get some interesting info on my ME brain, I would say:

If you have any symptoms that you think might be TIAs, don't ignore them!

I made sure to stick to non-ME-type symptoms and not mention ME, and the doc was excellent. He listened attentively, and was very helpful.

 

[xchocoholic]

Hi @MeSci

Good news. Sorta. I forgot what your symptoms were. Hell, I forgot most of yesterday. Lol. Tc . X

Ps. I had my brain scanned, ct and mri with contrast, post 2 hour seizure and post tia symptoms but heard it was ok. Nowadays I'd only feel better if I could trust a doctors opinion.

 

[Gingergrrl]

@MeSci I am so glad and that is great news! Keep us posted re: the brain scan and what you learn.

 

[xchocoholic]

@xchocoholic I wish I knew the answer to this question and I know you were asking me something similar in another thread which I have not had a chance to respond to yet.

In my case, I learned twice that going to my local ER was a complete waste of time and will never do it again. However more recently with my new CFS specialist and cardio who I trust (which is rare as I have been screwed over by doctors so many times in the past yet I trust these two fully) both felt my cardiac symptoms needed to be tested before they could attribute then to dysautonomia.

I decided it was worth checking out and if there was a co-morbid cardiac problem, we could treat it and if there wasn't (which there wasn't) then I can focus on finding the best treatment for my autonomic issues. That has yet to be found but I am trying.

Not sure if that answered your question?!!

Hi @Gingergrrl

I might be understanding this now ????

So if we're having "life threatening" symptoms regularly that didn't kill us right away then the plan is to look for causes.

Because while these symptoms can be "life threatening", our symptoms may not cross the line and cause death. I'm not sure doctors can always tell the difference.

But finding doctors who can properly diagnose the cause of these " life threatening" symptoms isn't easy.

I've certainly wasted too much time on doctors who didn't know what to look for. I realize that in some cases there aren't any tests that would point to a solid dx. But I've also seen tests not being utilized.

Do you have any tips for finding doctors who know what to look for ? And avoiding those who don't ?

Thanks. X