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.

Oh, sorry, wood, I forgot to answer your question about broth. I just use Knorr stock cubes - because they are one of the few that don't include ingredients DH is allergic to. I put 1/2 a cube in a regular mug with boiling water, and drink it like tea/coffee, one mug at breakfast and one at dinner. I imagine any stock cube would work.

rumbling I'm glad you were in casualty when it happened. Must be scary coming round on the floor and wondering what happened. You must wonder if it's a stroke or something if you can't talk?! Your poor friend. Although I'd like to think that at least she is being taken seriously if she's fainting about the place. Not like us hysterical women

Grouchy you say? Jeez, I think I've had hidden POTS for years then . And DH has it at the moment Actually, in the last year I do notice when I start to get grouchy, then become pre-syncope and have to go and lie down again. It's pretty inconvenient eh? Quality of life is rubbish.

Trying to read and analyse and answer and I'm spinning a bit. Apologies if I get confused.

Yes, murmuration, I apparently have ME/CFS, although as it's a 'diagnosis from elimination', they might not have tested me for that thing I might have instead? I see that 25% of ME/CFS people have actually been misdiagnosed. I wonder if you and I belong in another bucket somewhere?

Anyone else not feel particularly reassured that ME/CFS is often put in the Infectious Diseases department in their hospital? My consultant did a range of foreign parasitic blood tests too which I was grateful for, but he was quite dismissive about ME/CFS, even though he gave me the official diagnosis

Murmuration scrolling right back to one of your pp, did your little embryo survive after you went back on your medication?

Every single pregnancy I had seemed to trigger even worse dysautonomia and I was laid flat out right from the beginning. I really felt like I didn't have enough blood circulating and even thought about asking for a transfusion. I felt short of oxygen, became very breathless and could hardly stand to pee. I was so ill that I didn't want to eat, but forced down salty butter, crisps and marmite (I don't even like marmite) It wasn't pregnancy-ill, if you know what I mean. Every pregnancy ended in MC before 12 weeks & I am wondering whether this was down to the low blood flow

I assume I was very tachycardic then too, but this was before I had read about POTS and did not have a HR monitor. I felt anxious and fluttery in the chest, but I thought I was developing anxiety. Looking back, it probably was physiological.

So, it looks like we all have to balance our HR's, BP's, salt content and medication in order to stand properly? I have no idea how we manage this. As you say, the Dr's are only really interested in their own particular specialism and then you need to be a Google Detective to work out the rest. (Unless you can get to London like Visions and see a POTS specialist).

Also musing on the stairs vs lift thing to cardio. When I was diagnosed with 'vestibular' issues in the very beginning, I had to go for physio at the hospital 4 flights up. (16 sets of stairs in total). I used to take the stairs as I was housebound and thought the exercise could only be a good thing! I wonder what my HR was then?! I was in a bit of a mess when I got to the top......

Maybe I need to go and hang out at the hospital this weekend with my HR monitor and take some readings in the lift and on the stairs

Anything involving moving against gravity plummets my bp. Lifts are a big culprit. I once had to lie for ten minutes on the pavement in Cambridge after ten minutes standing on a bus that was rocketing around corners. Compression socks help a bit. I am not getting on a plane to see what happens, I suspect I know!

Ye gods rumbling you were lucky to not have been swept into the kerb in a University town . I've been feeling like I've been on a boat for the last few years and rocking buses would have done me too.

Mm. The last few flights I went on (pre-ME/CFS crash) I was quite poorly for a few days and thought I had a virus. Both ends. (Of the flight, not me!) Unsteady gait and nausea etc

Embryo is almost 5yo now :) Sorry for not finishing the story, there! for your losses. That sounds tough.

I used to get off planes like I was drunk - I would stumble about, could barely stand, etc. I recall leaning on the wall, staggering along the jetway. Even just 1 hour hops. People probably did think I was drunk :( Although on the plane they knew they didn't serve me alcohol, and I've gotten much concern and offers of wheelchairs from the flight attendants as I try to deplane (did take it up once).

I now wear compression stockings and it makes a major difference. I've also started wearing them on long train and car rides - anything where I can't move my legs enough to keep the blood circulating on its own.

Hooray for a happy embryo! So pleased you went back on your medication six years ago

That's very interesting about you on planes too. I wondered if it was mal de debarquement syndrome? Maybe this is connected to POTS. It's only started to happen as I got older - damn you body! So, compression stockings it is then

Although I cannot imagine going anywhere near a plane at the moment. I often stagger when I get back from a necessary short car journey. I fear that the longer I am housebound, the more sensitive to any motion I will get

Thanks, wood. Me too :)

You mention how you felt short of oxygen - does this still happen during tachycardia? The cardiologist who diagnosed me in the US explained that reason I felt breathless was that the blood was moving too fast to get full exchange in the alveoli in the lung. So oxygen-rich blood was just sitting 'stuck' in there, while the used, oxygen-poor blood whooshed past. My GP here says that's not right, but it makes sense to me. And I totally don't know what to think when one doctor explains something and other denies it. Perhaps the first fellow simplified it beyond recognition, or I didn't properly understand.

Hi murmuration Have been kicking around all weekend, hoping that someone who's brain works properly, could explain about this shortness of oxygen and tachycardia thing.

I've been looking into this for a while and considering hypoxia (low oxygen volume getting to the tissues). It seems the tachycardia can be a result of low oxygen and the heart then works harder to try and get the oxygenated blood round? prays for someone knowledgeable to help out here

I found this article, which although was from 2013, may explain some of the mysteries.

www.healthrising.org/blog/2013/04/17/are-oxygen-starved-tissues-causing-pain-and-fatigue-in-fibromyalgia-and-chronic-fatigue-syndrome-mecfs/

All interesting, but the subtitle Chronic Fatigue Syndrome (ME/CFS) bit talks about using propanonlol and amitryptyline and opening up blood vessels. It also mentions rumbling's dosing up with sugar/salt solutions. Have read many times that people feel better after IV fluids.

In other news, my long-awaited cardiology appointment is in 3 weeks and I am feeling MUCH better! Able to stand for longer and hardly tachycardic

Typical. I shall be laughed out of there now and I'm not sure what to do.

And my POLAR heart rate monitor is broke. overworked?

Hello, may I join you? I passed the poor man's tilt test with flying colours so been told it's 90% certain I have PoTS. I'm waiting for my appt with the London specialist, going privately. I think I've had it for years but pregnancy has made it far worse, so much so that I can't go upstairs until DH is at home.

Murmuration how did you find pregnancy and labour?

Hi sparky. I didn't know about PoTS at the time, but I noticed that around 12 weeks, when the placenta took over and started 'detoxifying' out my medication, I was getting breathless and having a much a higher heartrate. To the extent they gave me a 24-hr ECG monitor, but the cardiologist just looked at it and said there was nothing wrong with my heart beat (which we know - it's just fast).

But then I developed severe SPD a few weeks later and couldn't take a step much longer than 3-6 inches at at time, so was never able to be active enough to have any issues.

My HR was just above the baby's during labour (160-180bpm) which made it confusing for monitoring, because they kept getting my artery instead and had to compare with my pulse monitor to tell if they had me or the baby. But mine was usually higher, so there was a noticeable difference. I think it could be even more confusing if they overlapped.

We had a cardiologist and anaesthetist involved (in case my HR needed to be lowered during labour) and I was on consult-led care from the start, although it seemed almost easier back when it was "I have some kind of dysautonomia" rather than the current you-might/might-not-have-POTS thing.

So, I went for a BP check for contraception refill, and it was 87 diastole. I asked about it, and she said it was fine and actually lower than last year. That time I'd had blood tests first rather than just walking uphill, so I think that plan of arriving early to mimimise POTS symptoms might be good for re-seeing the GP about my BP. I find it strange how "90" is super scary to the extent of suggesting medicaiton, but 87 is fine (and if lower, than last year, it had to be 88 or 89 then!). My home measurements can range across 30 mmHg in the diastole (I've measured in the 60s and in the 90s) - does 3 points in one measurement at the GP's practice really mean so much?

Hello Sparkly! Yay! More people! Obviously NOT yay that you have POTS. Good that you passed though and going on to see a good consultant. Any tips about passing the test?!! . What was it like?

That's interesting that you think you've always had it. What were your suspicions/symptoms? Whatever IT is, it was definitely much worse while I was pregnant and quite soon on too. I was very breathless and my body really did not want to stand. (wasn't monitoring HR at that point). Heaven knows what it would have been like in labour?!

Luckily we have our resident expert Miss Murmuration on hand and she is way further down the line than me. Poor thing. Crikes, labour is scary enough without a HR higher than the baby's! And all those specialists with you . Such a relief it all worked out in the end . SPD too? That's really unfair.

Damn just lost a post murmuration. I went off half way through to try and understand BP. I feel I am letting you down with my input, as I'm very hazy on this.

I assumed my BP was really low as I feel awful when standing. My home monitor says error when it tries to get a reading and then kicks back in if I lie down again. GP monitor had the same problem. However, she took it manually and said it doesn't really change. 118 over 80, then 122/88 when standing.

Looking back, that's quite a range in the diastolic you have there. Mine is only 20 in range 69-89. I agree it's going to be tricky to balance out all the meds and treatments so that both your HR and BP are at acceptable readings. As you said yourself, you don't want to do anything too much to change it as you don't want to return to how you were

Has anyone got an Oximeter at home? I may have just ordered one

I've got quite the Home Clinic set up in my house here. I'm going to set up a pop up surgery here for all the old people in my neighbourhood and Skype in their daily observation results to their GP's

Just interested - why are you so adamant its POTS? In the nicest sense the CFS clinic will have advised against home monitoring for exactly this reason, so you dont concentrate on symptoms that perhaps you don't have the knowledge to interpret within context. Saying this I would still expect a basic set of tests including ECG, general blood screen (perhaps 24hr tape or excercise/stress testing depending) to be carried out to exclude other differential diagnoses.

sib - not sure who you're asking (or if just in general), but in my case I'm not sure, but I'm also not particularly reassured that I am getting accurate interpretation-with-context from a group of doctors who had clearly simply disbelieved me until I showed up with a letter from a physician saying the same thing I told them. (Can't remember if it's on this thread or another one - I take medication, prescribed for dysautonomia, but also used for depression, and first time round this specialist clinic they sent a letter to my GP talking about my mood and my "antidepressant", concluding I was depressed and nothing else.) Also I'm remembering a survey that showed that 85% of currently diagnosed POTS patients intially had an earlier, inaccurate diagnosis. What I'd really like is a physician who knows all about dysautonomia to be able to tell me if I have POTS, some other dysautonomia, or simply an unspecified subtype.

In particular, I don't have many of the commonly co-morbid conditions. I'm sure I don't have EDS - I'd think I'd know if I was hyperflexible after a few decades as a gymnast! I'm growing more confident I don't have 'proper' CFS/ME (despite that being one thing I've been diagnosed with), although by being a diagnosis of exclusion, and so heterogeneous in symptoms, I suspect many different physiological etiologies underlie the people currently grouped together under that name.

I feel somewhat frustrated that I can't even do the weird/rare conditions in a standard manner!

But I have found that applying POTS-coping techniques has made a major difference in my life. So if I don't have it, whatever my dysautonomia is, it responds somewhat similarly. My concern regarding salt intake is related to this - that is the only coping technique I use that has potentially negative affects in other areas, and I wouldn't want to be doing it if I don't really need to. (My recent uptake of vigorous exercise could have negative affects if I do have CFS/ME, but it really doesn't seem to be doing so.)

Murmuration, sorry I was aiming that question at OP. Glad you've found that some of the techniques work for you and you can find some relief from your symptoms x

SIB I'm not adamant it's POTS. I'm stabbing around in the dark here, trying to understand why I have always been fit and healthy and then -overnight- I couldn't get up! I LOVED my job and my life and then -suddenly- I couldn't stand without severe vertigo, stabbing headaches, horrendous pain, fatigue etc that has forced me into a housebound life. Do you know how long four years feels, when you spend the majority of that time horizontal and alone? Repeatedly trying to stand and 'keep active' as everyone advised. That the numerous medical professionals you see (some privately) have no idea what it is and don't really take you seriously......

I eventually self-diagnosed ME/CFS (it was the only thing that vaguely matched my symptoms) but it was two and a half years before I got to the ME/CFS clinic where they suggested a HR monitoring and cardiology referral. They forgot to give me the POLAR and when they did it was broken. We waited -forever- for a replacement and then just bought an identical one ourselves. It was only then that I realised my HR was ridiculously high, especially when I tried to stand (which was all the time, being a persistent sort of person).

I actually haven't used the POLAR that much, as I got to know my HR pretty much without looking at the figures. I don't enjoy hospitals, being a 'patient' or buying medical gadgets. In the absence of proper screening, this is what I've resorted to desperately looking for an explanation.

As you say "....I would still expect a basic set of tests including ECG, general blood screen (perhaps 24hr tape or exercise/stress testing depending) to be carried out to exclude other differential diagnoses".

This hasn't happened!!! (Apart from blood screening). Then I read about POTS and realised my symptoms were very similiar. Like mumuration I might/might not have it, but the advice has helped me to have better days. BUT a clear diagnosis (or not) would be helpful before I start self-treating anymore. The process of eradication is essential. I read that the average time for a diagnosis of POTS is 10 years. I can't face another 6 years of this, so I'm pushing now for something that should have happened sooner

It might not be POTS, it might not be ME/CFS (one quarter are misdiagnosed apparently) but I will keep monitoring and presenting what I have to any healthcare person I meet. As anyone would who was stuck inside a body that struggles with basic functions

Do you work in this field? Do YOU have any further advice? What would you do if you woke up tomorrow and faced this for the next four years?

Btw, I'm posting this journey here because I want to be able to help others who might find themselves stuck in this nightmare. I would love to think I could spare someone from the pain of this.

I have an oximetre, and while my sats are usually 98 no problem, on a really bad day its 92-95 and fluctuating a lot. I got the oximetre as my last blood tests came back with my haemoglobin at 148 when normal range is 120-150, and my haemocrit was 47 and marked as above range, with the range being 36-47. Indicative of chronic dehydration and low oxygen. My GP has no idea what to do with that. It's very likely hypovolemia, but no one's going to test for that.

The problem with this area of chronic illness is that if you don't research and advocate for yourself and find information and try things out independently you might as well just give up. Unless there is a specific treatment pathway to follow the NHS is not resourced to be much help. If I'd done nothing but meekly let my GP know best I'd have become bedridden about eight years ago and my diagnosis would have been 'panic attacks'. Which was ridiculed by the three consultants I subsequently saw who diagnosed Hypermobility Syndrome and POTS by insisting and making a nuisance of myself about symptoms my GP kept brushing off.

rumbling Your persistence is an inspiration. I'm sorry you've been on a long journey too.

The problem with this area of chronic illness is that if you don't research and advocate for yourself and find information and try things out independently you might as well just give up

Hear, hear!

I too have chronic illness so yes I do know its frustrating etc. I was just asking in terms of if there was a particular reason for the POTS route. Reading it seemed like you have focused in on this and were seeking a specific diagnosis which sometimes I think is damaging both physically and psychologically, yes research but also keep an open mind, sometimes our own focus that means we miss the point or see the wrong speciality. Put some trust in your healthcare team, always ask questions but keep an open mind.