Any Cardiologists or knowledgable, sympathetic GP's about? Scary tachycardia over 200 bpm

[WoodYouBeHappy]

Disclaimer: I have been diagnosed with severe ME/CFS in the last few years, retired on ill health and now housebound. Only 40!

Now ignore that bit.

My main symptoms (apart from pain) are debilitating vertigo, orthostatic intolerance and tachycardia. I only realised I was tachycardic when I bought a POLAR monitor last year - identical to the ones that are used -but broken- in the ME/CFS service. I showed my HR's to the ME/CFS Service and they were not concerned that it was reaching 150 on climbing stairs or on my 5 minute physio walk.

Now I have noticed that my chest strap monitor keeps recording spikes of over 200 bpm and often dips very low. I thought it was faulty (& changed the battery) but have tried it on DH and it displays a very regular healthy HR.

Right from the flu virus (that triggered ME?) I have been unable to pick things off the floor, go from lying to standing, or be active, without severe disequilibrium. Recently have been very breathless too.

So neither my GP or the ME/CFS clinic seem concerned about this and have not been interested in screening for POTS. I have had a rough winter and keep dragging myself up from my bed to wander about a bit in the home to see if there's any improvement.

Last week I managed to get downstairs (going up is the problem) and sit outside the back door on a recliner in the sun. Yay! Only I realised I felt quite dizzy and that I had tachycardia of mainly 120 - 239 bpm....whilst sitting resting happily in the sun . I expected it to drop (am happiest in the garden) but it didn't seem to be slowing at all.

I tried slow walking and even went inside and meditated calmly on the sofa to see if I could bring it down. Nothing. I then went upstairs to lie in bed to see if this helped. Still ridiculously high and had been for nearly two and a half hours. I was very close to calling DH and thinking about A&E, when I googled it and some advice said to hold your breath for a minute. I did and it began to drop and gradually returned to normal. Well, normal for me

Now, what happened here?!! Anything over 200 bpm is normally just brief spikes for me, here it was mainly between 140-230 for two hours, 30 mins. I was not anxious (have been tachycardic for ages now) and had had quite a good day.

What I am anxious about is seeing my GP & ME/CFS bod and asking again about POTS, tachycardia and a cardiologist referral! Do they think this is anxiety? Any top tips to actually see a cardiologist this time? I would really like to avoid any eye-rolling when I pop up again with HR readings

Surely this is something that should be investigated? Or am I always to languish in the deep bucket of an ME/CFS diagnosis No improvement at all in my recovery, so I'm looking for clues as to why not.

And I should say that unlike NoCapes on the thread below mine, I DID NOT have a nice gardener in the near vicinity when I became tachycardic! There was no-one about

Was this just what the polar monitor said, or did you manually check your pulse?

You can get tachycardia and general orthostatic intolerance from being deconditionwd due to ill health. Are you certain it's accurate? I agree on checking your pulse manually.

I think that would warrant taking seriously. Has anyone suggested a 24 hr or 7 day ecg recorder or referral to cardiology ? It would be entirely reasonable to request either or both.

Dang it. Didn't do that. But my heart was thudding and I was feeling quite lightheaded....

Do you think my POLAR is broke?

It's been ok since. Just back to the 'normal' 200+ bpm spikes

Added - having CFS doesn't mean you can't get anything else !!! That diagnosis needs to be put aside until other things are considered too.

The ME/CFS Service asked my GP to help with a 24 hour trace last year. She said they didn't do it at the surgery they do That was the end of it.

Feeling a bit dim I didn't check manually. I did however stop and restart the POLAR 5 times -during the 2 and a half hours- because I'd never seen such high levels and thought it must be faulty

Wayfaring I have read so much about deconditioning as I suspected that's what the GP & ME people have alluded to in the past. How though, can I have such severe OT and tachycardia one day and then get up the next day feeling quite ok? For me.

If the gp doesn't offer it they can refer to cardiology who can request it.

Thank you Didiplanthis . Just worked out your username. My brain is so slow.

I thought it might be a dinosaur I hadn't heard of.....

That is very interesting CFSKate. Hello again. Thanks for this.

Prof Visser has lots of informative videos. I'm off to watch the one about POTS now

www.heartrhythmalliance.org/stars/uk/STARS or POTS UK should be able to help with how to get the GP to refer to a cardio. Your bigger challenge is getting a cardio who knows about PoTS . STARS have a helpline , and were (almost) literally lifesavers for us a few years back (DD was very close to inpatient psychiatric monitoring ).

If you're in the SE and have £220 spare, I can let you have the details of a fantastic cardio who you could (probably) see next week; sadly his NHS waiting list is I think 2 years. If you can get a NHS referral to him though, he can see you initially privately, but get testing done on the NHS (we're having to supplement NHS appointments with private ones, as DDs Feb 16 appt has been bumped back 8 or 9 times to Sept 17).

PM me if you want some self-help stuff, I can share DDs "regime".

If you get a heart rate which is so high again and doesn't quickly rectify itself. Then you should go to A and E.
I did this last summer its one way to see a cardiologist quickly.

I really think you are being let down - just because you have one medical condition doesn't mean you can't have another. And ME/cfs could be a diagnosis that "misses" the real cause of the symptoms - just as a friend was diagnosed with multiple "allergies" when she actually had a tropical infection.

MyVisions that is fantastic, thank you!

So sorry to hear about your DD. Is there light at the end of the tunnel for you with a diagnosis and treatment? I can easily believe reaching the psychiatric stage with this. Poor thing

It doesn't feel like I'm being taken very seriously even though I've been mentioning my OT and tachycardia for over a year. My GP said "So you get tachycardic. We know this can happen with ME/CFS." My ME/CFS clinic gave us a HR monitor that was broken and discouraged me from getting one myself. She discounted POTS as "well you don't faint, like my POTS patients do".

No. But for 4 years I have trouble doing anything without seriously raising my HR, surely that needs to be assessed and discounted.

Will PM you

mummytime thank you!

Feel very isolated with this and very little energy to 'fight' in the right direction with the right people.

I will go to A&E next time (MN horror! ) as it was pretty scary. Hoping to see a cardiologist before then though for an assessment. Just have to convince my overworked GP.

Haven't been well enough to see her face to face for nearly a year. It's Groundhog Day in her office though when I do Us going over the same old....

have PMed with a massive long reply :)

Fainting is not the most common symptom of PoTS anecdotally, just one of the most obvious .

In our experience, A&E doesn't get you anywhere - once they've established it's not a heart attack/similarly life-threatening, you're sent back to the GP to wait for a referral.

OP, you've done/had your GP do the "poor man's tilt test", yes? Heart rate lying down, then after standing for 10 minutes. A rise of 40 bpm between lying and standing is diagnostic. See if they'll try that, and add it to your referral. Note that it doesn't happen every time IME, so try and schedule your appointment with an ill phase.

MyVisions I would match your pm, if I had enough energy. Thank you so much

Lots of useful information that I will use. I've been on POTS uk many times before and the heart rhythm alliance. I think I'm not quite meeting the fluid intake or salt targets yet, although I've had a good stab. Do I need to eat more Sea Salt Chocolate maybe?

Neither GP or ME/CFS clinic have ever monitored my HR from sitting to standing. Have performed my own Poor Man's Tilt Test many times at home and there is always a rise of over 30 bpm -which is what I understand is the figure. It gets worse if I ever pick up from the floor too, bleurgh. I'd be interested to know about my blood pressure too and I really don't feel too good when standing.

Right, off to wiggle my toes and keep the circulation going. Yes I do get purple feet, mainly in the shower [worried] Hence the shower stool.

Very best wishes to you and your DD

In my experience if bad enough A and E got me admitted for obs (but then they struggled to regulate my heart rate and discovered I was anaemic), and got me referred (and offered a procedure I haven't accepted yet).

But I don't have POTS - I don't think.

Crikes. That must have been an anxious time for you if even A&E couldn't regulate your HR.

Am curious about what you have if not POTS & this procedure you were offered.

I'd like to have 'something' with a clear treatment plan. Have spent too many appointments with no evidence of any medical issues at all.

I probably have SVT, maybe caused by Wolff-Parkinson-White syndrome. I was taught the Valsalva manoeuver and given some pills to use if I need in future. At the time they gave me something intravenously that was weird but worked, although it took a while to lower enough for them to take me to the ward.
I've been offered cardioversion but haven't accepted it yet.

Sorry not Cardioversion but Abalation.

Ah, interesting. My friend had SVT (I think) as she described exactly this. She was advised to have the ablation -which she wasn't keen on at first- and says it was brilliant. Local anaesthetic, day case only, over very quickly. Completely cured. She was so relieved as it was just getting worse and worse and really interfered with her life.

She is now my Chief Consultant Cardiology Advisor............

.....in the absence of any appointments with real ones