sudden high heart rate, extreme tiredness and low... - LUPUS UK

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sudden high heart rate, extreme tiredness and low blood pressure

ManiKochar profile image
8 Replies

so this has happened a few times in a few different settings.

On each occasion I’ve suddenly felt very vacant, like I’m watching myself in slow motion. I feel very calm but not anxious but also suddenly overwhelmed with tiredness. I could literally sit and down fall asleep.

The other things that happen are I feel a little short of breathe but for an hour (the kind you’d get if you ran up a flight of stairs) and my resting heart rate jumps from around 65bpm to around 90/95bpm.

It’s happened while playing sport, whilst sat at home, and at work - so situational factors don’t come into it.

Diagnosed with lupus in October 2020 and on Hydroxy and Azaithioprene with B12 and VitD boosters

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ManiKochar profile image
ManiKochar
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8 Replies
murtoz profile image
murtoz

Sounds like some form of dysautonomia. Would have said PoTS but that's triggered by a change in position from lyingdown or sitting, to standing. Still a lot of overlap with your symptoms so have a look: potsuk.org

MrsWillYoung87 profile image
MrsWillYoung87

Hi ManiKochar,

I'm sorry to hear of your situation.

As well as Lupus and other issues I've had since childhood, I have developed Dysautonomia, following 2 Covid infections, 5 months apart in 2022.

I get what you have described a few times a day, as well as the typical PoTS symptoms when standing from a sitting/lying position etc. PoTS was my orginal diagnosis but owing to a lot of other symptoms and following test results, that was "upgraded" to Dyautonomia (PoTS is a type of Dysautonomia, which is a umbrella term for a number of conditions of the ANS).

Do you measure your blood pressure when you check you heart rate? It's likely dropping low when your heart rate rises which is why you feel suddenly tired.

I'm blessed with a wonderful and well informed Cardiologist who leads my care for this condition but there is little in the way of treatment and it's mainly lifestyle changes to help control things.

Ultimately, only the medics can tell you and your GP or Rheumatologist should be able to point you in the right direction. A basic instruction for any symptoms like yours are to be well hydrated and (assuming you don't have any issues with your kidneys) isotonic sports drinks are recommended.

Best of luck with getting a hold on it!

chrisj profile image
chrisj

I was in a pub recently with family, a rare visit, and passed out as we were leaving. I felt odd when we stood up to go, had to sit down again lay my head on the table and I was out of it. It wasn't for long but it felt awful. Its not the first time either.

Paramedics called out by my daughter one time a few years ago said my BP had plummeted and sent me off to hospital by ambulance. It left me feeling wiped out. All I know is its down to low BP, was told "not dash about". I honestly don't think the hospital knew why it was happening.

Given that I have asthma, auto immune problems and osteo arthritis dashing anywhere is not an option....its such a nuisance I'm reluctant to go anywhere by myself and my son is agoraphobic..when I pointed that out to him his reply was not to worry if you pass out by yourself someone will stop and help. You can sit on the edge of the pavement until it passes....

I have kidney damage as well from an e coli infection.

MEGS53 profile image
MEGS53

Hi

I get similar and my cardiologist tells me it’s a form of dysautonomia. The worst I had was following an operation on my knee. Horrible experience as there’s absolutely nothing you can do to help yourself. It lasted several hours, which is a long time for a dysautonomia episode according to my cardiologist. 🤷‍♀️🤷‍♀️🤷‍♀️ I also get dizzy/ disoriented/ swoony type feelings which last a minute or so, all part of my form of dysautonomia

After the operation they put me on a sodium drip and wrapped me in a hot water jacket, apparently my core temperature was way too hot, while my extremities were icy cold.

I was also told to stay well hydrated etc etc.

I feel for you as it is scary 🤗🤗🤗

StriatedCaracara profile image
StriatedCaracara

Autonomic dysfunction is quite a broad area and includes POTS.Here is another post with a link to 'The Dysautonomia Project'

healthunlocked.com/lupusuk/...

ManiKochar profile image
ManiKochar

Thankyou everyone 😀

michaellasmith profile image
michaellasmithAdministrator

Hi there ManiKochar,

Did you manage to consult your Rheumatologist or GP about these symptoms or are you waiting on an appointment?

Warm regards,

Michaella

ManiKochar profile image
ManiKochar

I haven’t yet sadly, I’m a teacher so finding 15 mins to do this stuff is hard

I will do hopefully in the next few days

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