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.

SIB I'm sorry to hear you have a chronic illness too. I have always respectfully put every faith in the medical practitioners. However, as time goes on and the years pass and no-one seems to know what to do, do you not feel that you have to take some initiative somewhere? That there may be things they are missing? One of my Dr's said it's completely natural to have this urge to want to cure yourself. I do remain open minded and never exclude any possibilities.

I have been using the oximeter which has been useful. Sitting up on one occasion I really did not feel well and my oxygen levels had dropped to 86 and it had triggered the alarm. On another occasion, standing up from crouching, my HR went up to 136 and the alarm was triggered again. Knowing what is physiologically happening has been really useful. Bearing in mind I have met a fair few people who have hinted that it's anxiety-triggered. I actually feel less anxious when I see these readings and understand what is happening.

I've had two more occasions of that high tachycardia I was talking about too. I wish my cardiology appt was much sooner. I feel like I need to move on past this bit and implement more POTS techniques which seem to help.

rumbling thank you for your post. It really helped. My Haemoglobin levels seem to be ok, just the occasional oxygen dips. Hypovolemia is a new word for me. I've read about many people feeling much better after IV fluids, I guess this improves blood volume? Regular blood transfusions are I guess a little drastic?

I'm glad it helped.

My cardio prescribed fludrocortisone and experimented until we found the right dosage, that helps with retaining salt and water to keep up bp. He also advised a minimum of 3 litres of fluids a day. I do really notice a difference if I haven't had enough to drink, and getting down a lot of fluid is the first thing I do if having a bad day.

wood, actually I know someone with POTS who hooks herself up to a saline IV every night - that's her main treatment and enables her to function. She has a 'portacath', which is basically a permanently implanted catheter. I guess its a nonpharmacological treatment, but I must say I find the idea horrifying. I'd much rather take a pill than have a permanent hole into my viens (she has to wrap it all up for showering and swimming and everything). I'd see that as something along the lines of last resort...

sib, I guess the problem with putting trust in your healthcare team is what if your trust in the them has been broken? I'm seeing my specialist again this week, and I fully expect to be discharged completely with a negative tilt test. Although I hope that with the additional evidence I provided by a letter from my previous physician, that they won't send a letter to my GP saying I have nothing but depression. But who knows? And I really don't know what to make of interacting with people who just clearly decided I had to be lying. I can't help wondering at what stage did that happen - did someone write my story in my notes and then also a conclusion that it couldn't be true? Or did they do it in their head, and skip my story out entirely?

I'm lucky enough that I'm functional enough to hold down a FT job, even it means my home life is compromised, and at this point if they want rid of me I want rid of them. I'm looking to make a move in my job, and I did a time-use analysis, and have found that I've spent an average of nearly 1 hr/week over the last year on doctor's visits. I could use that hour much more productively than being made to feel small and ignorant by health care professionals. I at least have this medication which I can continue to take, whether or not someone interprets it as an antidepressant or not, and it enables me to function at 70% or so.

But that is completely besides the OP's point. Sorry wood, for going off on a complaint/tangent. I hope that your journey is far more productive than mine has been!

Very interesting about the oximeter. Where did you get it? I've found that the things I have to pay attention to are sometimes counterintuitive, and I wonder if a monitor like that could help. If my blood oxygen is impacted, that is. For example, I get massively faint and dizzy sitting on the floor, with my legs 'trapped' such that I can't wiggle them, or doing something that requires relative stillness, like decorating a cake (as I discovered recently). But I can do heavy lifting and strenuous exercise no problem. When embarking upon a big physical activity, you might think "oh, this could be difficult" - I'm not to the stage where I immediately think that when spontaneously sitting on the floor to play with my daughter.

murmuration never apologise for going off at tangents etc. I learn something every time you post. Thank you

That's fascinating about the portacath. But god yes, drastic. With my energy so limited, I wouldn't be able to keep up the care/hygiene needed for that. I'd get gangrene and lose an arm . Is she in the UK? ( I know you got most of your POTS support in the US). Of course I'd do it like a shot, if it meant I was able to get out of bed and live my life again!

I do hope that there is a little more support for you at the specialist next week. The thought that they might send your GP a letter saying you just have depression makes me so cross & I'm sure it happens a lot. . I fought off AD's for so long as I couldn't stand/go out/work due to the severe mystery physical problems and I didn't want each specialist to see that on my notes and just think I was depressed. In the end (after 2 years) I accepted Sertraline "for chronic fatigue" from my GP and within 2 weeks I was able to lie completely flat without 'spinning' (needed propping up before) and my body was able to go from supine to standing without such severe symptoms. Have I told you this already? It was quite odd.

When I told my GP and ME/CFS clinic about the balance/OT improvements, they said it was because I was just starting to feel much better overall, BUT I KNOW IT WASN'T THAT!!! I was still depressed (with the situation) and in pain, but the OT was easier. My research tells me that SSRI's often provide POTS patience with some relief from their symptoms, so I added that piece of evidence to my Cluedo notebook

Yes, the oximeter. I got this one but was in a spin trying to choose the best one, so don't rely on my random choice

www.amazon.co.uk/d/Oximeters/MeasuPro-OX250-Instant-Digital-Setting-Display-Approved/B017C0X3L8?tag=mumsnetforum-21

It's good and works well. It doesn't like much movement which is a pain, but it continues displaying your HR/Oxygen levels until you remove it. I expected my saturation levels to be much lower, as I feel so ill when standing, but it's pretty much in 96-98% which is good to know. Saying that, I haven't been moving much for a month (since we hired help at home) so I haven't felt as sick.

In the week before Cardiology, I shall get back up and try and live normally around the home and then we'll see what it says. This normally results in a crash/relapse, so I'm keen to know the figures then.

What I really need is constant monitoring of HR/BP/Oxygen levels as they're all so variable. These 'snapshots' of my results are not particularly reflective of my normal life. I'll be getting the just depressed letter soon!

murmuration that is a really depressing statistic about your time at medical appointments. I know exactly what you mean about wondering about your case history and judgements that have been made. I'm not sure I can be held responsible for my actions if someone else leans forward and says "You DO KNOW that all of your test results are CLEAR" as if I had totally missed this piece of information and that them reminding me will result in me leaping up suddenly cured

I have had a lovely Mumsnetter PM me (thank you!) who knows someone who is going through a similar journey to ours. I know that ultimately, it is about crossing paths with that right medical practitioner who recognises that something isn't right and puts you on the right path with the right tests. They themselves (male) now seem to be on the right path to diagnosis/treatment, but part of me wonders if we're not being taken seriously because we are 'women of a certain age', many of which get 'dizzy'.

Gah, my brain is only working in stages today....

I meant to say murmuration, that's interesting about finding difficulty with smaller movements/staying still and heavy lifting/strenuous exercise. I felt so sick on my phased return to work -on small paperwork duties- but once I started hooning about doing very physical work and my adrenaline kicked in I felt much better! Until the next painful relapse.....

Thanks for the oximeter pointer, wood. I have lots of thoughts in response, but not sure I'll be able to get them out in a post right now - things have been full-on at work (but I'm coping!) and I'm not having much space outside of it. Mostly just heading to bed early...

My friend is in the US. I see what you mean about if it could give your life back, you'd go for it. I guess for me that as I've gotten to around 70%, I wouldn't think it was worth the other 30%. She's also a physician, which means perhaps she isn't quite so creeped out about sticking stuff in a body as I am :) and also it has given her some ability to advocate better for herself. Her doctors know she'll understand their doctor-speak and I think there must be a measure of just treating what she says with more respect. Although, as a physician, she also stereotypically didn't actually go for help until she was carried off to hospital and required a feeding tube as her body wasn't even accepting food anymore. She still needs a lot of liquid calories. (I went through a period of difficulty eating, but got help much sooner - I had not realised until we spoke that that it could have been due to POTS/dysautonomia; I just assumed it was something completely different, but the autonomic nervous system controls your gut, too.)

One problem with me and depression is that I have been depressed, so I think they just assume it's come back. But that's the thing that convinces me I'm not depressed - I had it before, and I feel nothing like that now. When I was depressed I had no motivation, was unhappy, and couldn't see any way out and couldn't imagine being able to enjoy anything. Now I have far more motivation than is good for me, and my unhappiness is a side-product of frustration and anger at being unable to do what I want, and I totally can imagine tons of things I want to do that would make me happy. I've been working on mediting and gratitude practices, and I can say that for sure I'm definitely not depressed. I'm rarely even unhappy now - I feel much more anger at the situation than anything else. (Will they say I have some anger disorder now?)

Okay, and I had thoughts about doctors and how you're right about finding the right person (too bad the right person for me is a cardiologist in the US - I do email him every few years to update, and he was super-helpful with sending papers and stuff to give the medical team when I was pregnant, and he was also instrumental in getting my medicine off-license in the UK), but I need to head to bed now.

Good plan to do stuff before your cardiology appointment! Exhibiting more severe symptoms I think will help.

Hey @Murmuration I'm back! Just realised I didn't physically reply to your last post, just in my head. Useless

So, copied over from my other thread to save energy. Still in bed

Saw a brilliant Cardiologist/Electrophysiologist this week. Taken seriously (for a change). ECG BPM was nearly 140 lying down, so not my greatest achievement but enough to warrant a discussion. Relieved I didn't present as a complete fraud, as I have actually been feeling better this last week and the OI had improved

Three conditions suggested, one being POTS. All caused by a wonky Autonomic System, rather than actual heart problems (which I 99% knew anyway). May have been triggered by that initial flu virus four years back, but as we don't have readings for back then, we'll never know.

Have been referred on to a tilt table test, the results of which will determine what medications they could try. Whatever it is, he said that extra fluids (and sometimes extra salt) can help and worth trying that anyway. I had actually been following this protocol, so maybe that explains the improvement? He noted down that my SSRI had actually helped with the OI and both DH & I were keen to emphasise again that it was not 'depression improving' developments. He said that some people find SSRI's help and some find they don't. I agree with you that we know what depression feels like and it wasn't that!

My subsequent research suggests that many ME/CFS patients have Dysautonomia of some sort and various treatments do not seem to have much affect . Other online postings say that medication totally cleared up their tachycardic issues followed by all their 'ME/CFS' type issues and they resumed a normal life.

I am feeling optimistic that we now have new avenues to explore. DH is more pragmatic and reminded me that every consultant we have seen on this journey has listed all my symptoms and matched it up to their specialism with offers of treatments and recovery. I hope he's not right

By the way, I could have written exactly this too!

Now I have far more motivation than is good for me, and my unhappiness is a side-product of frustration and anger at being unable to do what I want, and I totally can imagine tons of things I want to do that would make me happy. I've been working on meditating and gratitude practices, and I can say that for sure I'm definitely not depressed. I'm rarely even unhappy now - I feel much more anger at the situation than anything else. (Will they say I have some anger disorder now?)

So just need to work on our anger now and keep our HR's down . How are you at the moment? Is your DH showing any seasonal improvement?

Dang it. Forgot to ask him why we get breathless and your lung oxygen exchange information?

He did say that the tachycardia occurs because of the fault in the autonomic system. When the body stands, the blood vessels don't constrict as much as they should to keep the oxygenated blood pumping around and the heart kicks in as a reflex and attempts to help by beating faster. Guess this is why your compression stockings can help. He said there is lower-body physio you can do as well to try and tighten up and encourage the vessels to be more efficient. I think that's right.

It was an information packed session and I was relieved to be feeling better so I could understand most of it for a change

My brain! I also wanted to repeat that he said the HR monitors and oximeter readings aren't really so useful. They pick up the basics but aren't developed enough to report any issues in detail. So, missed beats, spikes and drops they struggle to represent and any irregularities you see on your screen can be because the monitor is 'dropping out'.

The oximeter may well be reporting a drop in oxygenated blood but it is only commenting on the blood that is in the fingers at that stage. So it's a localised report and the oxygenated blood is still mainly where it's needed in the main torso. I guess that makes sense. They do use them in Dr's and hospitals though don't they? I wonder what they make of low oxygen recordings?.....

@MyVisionsComeFromSoup @rumblingDMexploitingbstds

Thank you for all your earlier postings and PM's. I know I was feeling mentally sharper this week but excellent research and support before the appointment meant I wan't 'blinded' by new biological information and could ask more relevant questions. I had a list too but I am still remembering more today

I was more active pre-assessment but I didn't come off the SSRI. It's only 50mg. I wonder if I should come off of it before the TT test? It would be embarrassing to not see any results... He said I could always postpone it and ask for the TT test during a relapse

One thing that was reassuring, was that he said this was NOT down to deconditioning. I should have asked him to bold this statement in his summary letter so I could show it to ALL medical professionals that keep repeating this to me.

The only big question that I have now is, did this start from the flu virus (no evidence to call on) or did/do I have ME/CFS and as a result now have a Dysautonomia issue? Or has all my worrying about never recovering bumped up my HR and caused this?

Crashed. Yesterday. Still here lying flat today. Didn't have to wait long for the relapse

Quick, bring on the TT test!

Hi Wood. Sorry I am late to your thread. I have had a similar journey only it started 8 years ago. I started with extreme breathlessness- (I am asthmatic - but it had got to the stage I could not walk or talk but I wasn't actually wheazy) what was eventually diagnosed as autoimmune pneumonia and I spent a couple of weeks in hospital on oxygen. After a week or so ( and a lung biopsy which confirmed the allergic/ autoimmune pneumonia) although my blood oxygen - which had been very low, started to improve I suddenly felt much weaker and had trouble sitting up (faint/ dizzy) and my legs were like dis coordinated jelly. I really did not believe I could have become so seriously deconditioned in a week( even if I was considered very ill) It felt like I had gained a new problem- and actually I felt more unwell. Anyway long story short I bought an oxymeter- when a year later I still struggled to function when not flat. My asthma treatment was adjusted- other health issues were addressed, but I still kept feeling pathetically weak dizzy and faint and keeled over if I tried to move fast. like you I really had to take charge and asked for various referrals. I needed surgery for a sinus problem - and my postural tachicardia and hypotension were noted and I saw a cardiologist. I never got a tilt test ( only the poor mans version) as our county did not have the facilities locally, but was presumed to have PoTS as part of my CFS. He gave me lots of pointers and advice - like wearing support tights or leggings, drinking lots of fluids upping my salt intake and trying to build up my leg muscles. Propanolol was advised but my go decided against it because of my asthma. I am now very much better. I still could not work full time, but much better none the less.
Looking back I think I have had some degree of POTS all along but something happened whilst I was in hospital or ill, that made it much worse. Perhaps it was a degree of deconditioning due to illness- perhaps the high dose corticosteroids ( which can cause a rare myopathy) perhaps the low oxygen whilst I was critically ill or a mix of several factors-I don't know. Anyway I rarely use the oximetry now unless my asthma is playing up - and then only to check if my breathlessness is down to my lungs (asthma) or the tachicardia. I actually discovered that mostly my breathless, wonky legged dizziness came from high heart rate rather than particularly low oxygen from using my oximeter. I think the breathlessness is due to the inefficiency of a fast heart rate. The feed back mechanisms in the brain pick up slightly low oxygen so increase the HR ( and possibly breathing rate) and again and again until it really is making it worse because having low blood volume is part of the trouble. My CFS specialist said Pots is often an intergalactic part of CFS.

intregal! My iPad has an active imagination!

Sorry you have crashed! Agree bring on the Tt!
I hope you are soon feeling better. I think my improvement is not just down to POTs understanding and manoeuvres. Treating an underlying sinus infection may also have helped, as well as possibly other things, such as getting my lungs slowly clearer. I got somewhat better when started taking good oil supplements. So fat and high salt - what a health kick eh?The trouble is I don't really know! I just checked my HR on standing and it dropped a lot but I could not stay still (it's so automatic now to wiggle and tense my legs) my HR stabilised much faster than it used to! I just hope you are soon getting more well.

Ah maggiso it's very interesting to read your posts, thank you. (Trying to recall what your previous posts have been about....)

You've had a rough time! I haven't been hospitalised or had lung issues. Poor you. Reassuring to read this bit:

I suddenly felt much weaker and had trouble sitting up (faint/ dizzy) and my legs were like dis coordinated jelly. I really did not believe I could have become so seriously deconditioned in a week( even if I was considered very ill) It felt like I had gained a new problem- and actually I felt more unwell

Obviously not reassuring for you, but this is exactly what happened to me and I can't seem to get anyone to understand this! It comes and goes too, so some days I can wake up and stand without too much orthostatic intolerance. In fact, I'm quite well functioning. I agree too, the breathless dizziness is linked to tachycardia rather than oxygen levels.

And I'd much rather have POTS and Intergalactic CFS! Sounds way cooler

Yes I quite fancy that too! Actually perhaps zero gravity would help! Now there's an idea!
I'm sure we have talked before - perhaps some while ago.
Its so good to see a health professional that takes symptoms (even though test results are often odd or 'normal') seriously isn't it! The cardiologist I saw explained that leg and arm muscles can work like secondary hearts - by helping to pump blood back towards the heart ( away from the legs/arms).
The reason I think I may have had some degree of POTS/OI is that I used to faint easily particularly in the mornings if I got up too quickly as an adolescent/young adult- especially if dehydrated. My sis was the same so I thought it normal. I spent many a flight on the floor too- I assumed it was travel sickness- or the pilot dropping the air pressure too low. But I was fit and rather hyperactive so it was only a bit of a nuisance - and I usually knew when I was about to faint so rarely .dropped too hard- although it could leave me unfit to do anything like drive or look after DC for some hours.
I don't know if we all have to be super athletic fit to control POTS Murmuration. I am nowhere near as fit as before I got ill-(I was into climbing/walking/cycling) but my POTS is better controlled just by getting a bit more muscle on me. I think we last talked when I was trying to build up leg muscles with floor exercise ( so I could literally exercise lying down.

I read somewhere that astronauts come back from space with PoTS, can't remember the exact reasons why offhand though.

DD2 saw a respiratory physio who said (along with her cardiologist) that a lot of PoTS problems are caused/made worse by overbreathing - where you end up with too much oxygen and not enough carbon dioxide in the bloodstream. The "breathlessness" is because the brain has got too used to the high oxygen levels and panics if they drop to "normal" levels. So tachycardia is caused/made worse by poor breathing, rather than causing the breathlessness ifswim.

All seems a bit chicken and egg, but once her exams are over, DD will be working hard at the breathing exercises she was given, so I'll update if it seems to be making a difference.

I saw a respiratory physio too Visions (long before the possibility of POTS or CFS came up) and was told the same thing - that the fainting was probably over breathing. it turned out the opposite was happening for me - I was forgetting to increase my breathing depth before movement etc- so I presume that perhaps the brain just gets it wrong for some of us. The breathing exercises and adjustments I was taught are very useful- I still use them on stairs/hills to get up them-so I hope your daughter finds it helpful.
I suppose bodies (and brains the control of them)are adapted to the downward force of gravity and become unadapted in lower gravity.

wood, so pleased to hear your cardiologist appointment went so well, hurrah!

And no problem with not replying for so long - I've been off the internet for a bit of a break (I find it is really restful - I think perhaps because I have social anxiety which doesn't seem to care if my interaction is in-person or online, and so even if I'm having 'fun' on the internet I'm still getting the autonomic response, and since I have a disorder of that nervous system, it makes it all worse... so just not having those triggers is restful...um, gone off on a tangent already! But I have been thinking about this recently, particularly about how amazingly restful lack of internet is, even if I miss it... anyway, back to what I was saying). In fact, I was under the impression that you had replied before I went off-line and I hadn't written back, and was feeling like, oh, I should have replied to wood before vanishing... So we both thought you wrote something (maybe the telepathy worked :) ).

Very interesting about the lower-body physio. I wonder if I've been doing sort-of that by taking up horseriding again - my legs are definitely stronger than they were 6 months ago!

Thanks for your story maggiso. And I do hope we don't have to be super-atheletes for control! It's not like I had much more time for "life" back then anyway - I was always working out outside of work, instead of sleeping like now :) I'm feeling a lot better already with what increased strength I've gained already, so I hope I can just keep down that path.

And, as I expected, I've been discharged again and I'm just ready to step off the treadmill for a bit. I can use my extra hour a week at work to advance my job instead of feeling bad at doctor's visits, and that surely will have better knock-on effects for the rest of the time as well. I am distrubed, though, by the whole thing. I was expecting the discharge and talked over with DH that I'd just accept it if they said that, but then they threw a bit of curve-ball and I'm just not good at responding dynamically to things. At the very end, I said, "So, we'll just leave it then that I have an unspecified dysautonomia and take medication to control its main problems, and have found coping techniques that help for other issues." And the fellow said, "What? I don't know about this?" And at the time I interpreted it to mean about the medication - which I then explained what it was and the effect on me when I didn't take it. He flipped through my chart and did find it listed, asked if I was able to continue to get it, and then was satisfied when I said I had it on repeat.

But later I've thought - how could he not know - surely that was the whole starting point of everything. She has dysautonomia, takes a medication, but there appears to still be more problems. And I didn't see the letter from my US cardiologist in my chart, which I know the GP sent on with his referral this time (in addition to me bringing it to my first appointment), and which prominently mentioned the medication in addition to his conclusion of a dysautonomia. It's making me wonder if the "this" he didn't know about encompassed both dysautonomia and my meds. But, oh, well, I just don't have the will to pursue things anymore at the moment. I think if I do again at some point, I might try and go private - I have a pointer to clinic (far from me, but not too far from friends, so I could visit) that helped someone else I know discover their dysautonomia, and he said it wasn't too expensive. (I can PM that to whomever wants.) I feel like I've got things under control, and am improving. My current goal is to work up to only 2 afternoon naps a week, although I haven't yet crossed a week when I wasn't so exhausted that I desperately needed them both weekend days and my afternoon off. But that's my small goal for now.

Thank you, thank you all for your posts. Reading and digesting carefully. Telepathic messages for you all right now, until I can get back.

Very adrenalised and have to come off the internet for a couple of days to rest and sort out some RL stuff which has been backing up.