POTS: how do you manage yours?: Yesterday the... - LUPUS UK


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POTS: how do you manage yours?

Barnclown profile image
β€’20 Replies

Yesterday the research rheumatologist advised me to see cardiology for more indepth checks on my version of POTS. I've been avoiding cardiology...managing my POTS with my GP & lupus + Vasculitis clinic. But am older & more vulnerable now. And my ehlers danlos hypermobility issues are becoming more significant in my mix of active issues. Would be v glad to learn how others manage their POTS (monitoring, treatment etc).

πŸ€πŸ€ coco

20 Replies

Hi Barnclown

Sorry your facing more tests and Consultant visits for Cardiology. As if your not coping with enough but as symptoms have worsened it is the right thing to do.

Keep us posted as to how you get on. X

Barnclown profile image
Barnclown in reply to misty14

Thanks misty! πŸ€—....I'll keep you posted. Am lucky not to be feeling anxious about this...am sort of feeling so used to all this that it's just normal! The really good things are that you are all here on forum & every clinic I attend is being so attentive & supportive + all the treatment plans are helping a lot.. At 62, after a lifetime of this stuff due to infant onset lupus & EDH, I feel v lucky πŸ‘ŒπŸ‘πŸ˜˜

POTS UK has some great information on their website with advice on how to manage the condition: potsuk.org/general_advice.


Barnclown profile image
Barnclown in reply to LUPUSadmin

Thanks George: I'll check this out πŸŒŸπŸ‘

Mine hit me in mid-December and I'm yet to be able to get out of the house on my own, or walk/stand for more than 20 minutes. Some days I can't even get up. Th symptoms are dreadful - I thought lupus was bad, but this really takes it to another level.

Usually pots is diagnosed by cardiologists with interest in autonomic dysfunction but there aren't many of those. The POTS UK site has a list of specialists and most are cardiologists. But general cardiologists won't be able to help. I've seen 5 cardiologists since December and only the 5th one suggested it might be pots. Secondly, pots is not the only dysfunction causing these symptoms - a cardiologist might help with the "straight" pots but might be less able to with the other types. You might want to go on the dysautonomia international website and browse a bit.

It is a multidisciplinary approach - the symptoms affect different body organs/systems, so specialisations involved might be: neuro-gastro, urology, nephrology, cardio, ophthalmologist, neuro-vascular.

As for treatment - it will depend on the specific symptoms. The main things are salt, water and compression. Then if the symptoms are serious, meds for the yo-yo BP/HR, some for the gastroparesis, some for bladder, others for the adrenaline excess (for those with hyper pots) and so on.

I'm not diagnosed yet, I'm seeing a specialist in April. I just hope that I won't end up bed bound or house bound with this thing.

I understand you're reluctant to see cardio but you've managed yours so well all this time, no one will push you to take meds if you don't need them. And compression tights make a difference for blood pooling, if that's becoming an issue.

Barnclown profile image
Barnclown in reply to Purpletop

Thanks so much PT! Am greatly feeling for you...and thankful you're as well informed on POTS as you are on lupus...this is clearly standing you in good stead. I can, as far as another is able, at least just begin to understand what you're going through because it sounds a lot like a phase I went through in my 30s when I was housebound with what I'm told was my version of secondary POTS & vestibular neuritis before my version of lupus was diagnosed. It was a very tough time, long lonely despairing months....and great anxiety even once I was finally able to begin leaving the house a bit again...it took me over a year to even begin to feel more stable.

I do so hope the April POTS consultation is constructive and that you begin to see brighter light at the end of the tunnel. I remember how deeply bleak things have looked for me for long dark periods over the decades, but here I am: i've had 5 years of feeling better than I have since my 20s thanks to lupus meds, my POTS is fairly cooperative and at 62 none of my most nightmarish, fearful anticipations have been realised.

You're right: this is multidisciplinary...already all my various clinics (ent, gastro, urology, immunology, rheumatology, eyes etc etc) are aware of my POTS & helping me with it, e.g. I manage the chronic gastro issues reasonably well with the right meds & lifestyle stuff, and, for instance, when I had my little urology op under GA last summer the anaesthesiology team looked at records describing problems during my previous ops & went to great lengths taking my POTS into account: I was made to stay in overnight, wear the stockings etc & was given (haha) a "special & most expensive" GA...things went ok.

Since my infant onset lupus diagnosis was recovered in 2010-11, and daily systemic treatment begun, my more severe POTS events have been much less frequent. And my GP's 24 hour ECG wasn't too alarming. So, mostly I'm managing ok thanks to all my other clinc's...and hoping I can continue to go without cardiology. But my age and the increased level of numbness & blood pooling in my lower legs & feet mean it's a bit harder for me to reliably cope with the blackout onset thing...so I suspect it really is time to at least touch base with cardiology...and I'm hoping that my long history & Multidiscipline records will stand me in good stead

πŸ€πŸ˜˜βœŒοΈ coco

Hi Coco - I'm about to post about my appointment with a private endocrinologist earlier today. Lots of overlaps in symptoms and I've been learning a lot about PoTS too since Purpletop very helpfully drew it to my attention.

The endo today seemed to think, as did GP yesterday - that orthostatic hypotension was a key indicator of PoTS - but I was tested yesterday and my BP and pulse just remained steadfastly soaring! He did concede there was a lot he wasn't gemmed up on outwith the endocrine system. I hope it helps you in your endless and very illuminating quest for answers and treatments. I know the symptoms that you and PT suffer are often debilitating.

But having recently discovered yet another HU community of shadowland dwellers, mostly stuck on high shelves with unexplained and horribly debilitating symptoms, I think the main thing we each have to count as blessings is that doctors usually take us and our symptoms seriously. I know from your posts that this hasn't always been the case - but it is now. Maybe this is because we have worked so hard at our own personal "power point presentations" and know a great deal about the significance of certain symptoms and signs. X

Barnclown profile image
Barnclown in reply to

Well put twitchy πŸ‘πŸ‘πŸ‘πŸ‘.

Am looking forward to your post!

You're right: It feels absolutely FANTASTIC to have all my Drs of all types stepping up so responsively and efficiently...and relatively quick at figuring out my stuff as each aspect becomes the priority for consideration. It's hard to really believe I'm consistently getting this attention & such effective care...but I never take all this for granted...meanwhile I try not to think about my decades in the wilderness...but I remember all that only too well....and I wish I hadn't had quite so many decades of getting worse & worse, feeling abandoned....and i do vvvvvv much feel for everyone who is making their way through that darkness...a darkness which continues to shadow me everyday, which means I always have to keep doing everything I've learned thanks to CBT ....my impression is that once we've been in such dark places, no matter how relatively good things get, our degree of emotional vulnerability never fully recovers


in reply to

A typical case of an intelligent patient going through the ignorance/ lack of b*** common sense deeply ingrained in Rheumatology. You are certainly not alone. I have heard of a patient who had to wait 25 years before she was finally diagnosed.

Barnclown profile image
Barnclown in reply to

Yes. There are so many going through this

If my mother had actually brought herself to tell me about my infant onset lupus diagnosis BEFORE the NHS realised I had lupus 5 years ago...I wonder how much better my treatment might have been....I'd probably have been on steroids a lot...those were the days before myco. I do think I'm lucky that my mother was still alive to admit her secret, though...partly because my medics clearly are fascinated by the story!

Hi barnclown

I've been told I have PoTS but need formal tests to confirm it. I'm not sure who you've seen and what tests you've had yet? I'm seeing a cardiologist in a few weeks. This is all quite new to me but I've been told to increase my fluid intake and salt intake. I get very slowly, particularly from lying down. I have fainted a few times but I do regain consciousness fairly fast, although I'm very ill afterwards. This has usually been because I've got up too quickly, even when I thought I hadn't.

There are medications but I believe it depends on the cause. I've heard that blood pressure doesn't change with PoTS but my blood pressure is very unstable. I know that paced exercise has been proven to work but I'm not sure if you've had a full cardio work up yet. I've been told I need this before they can start treatment.

I find it tricky because mine is very variable. I do get a bit scared, mostly about driving as it can come on quickly. I was advised to keep sugary snacks on me at all times and those glucose tablets incase blood sugar does play a role.

Take care.

Hello crashdollπŸ‘‹ And thanks. Sounds like you really do need to see cardiology...so I'm glad this appt is booked! George's link, above, is great...lots of good solid info there for patients & medics, inc the sort of lifestyle management that's been helping me to cope with my version of POTS all these years

Yes have had POTS symptoms consistently all my life, and been coached by various medics how to manage my symptoms by "conservative means". This is secondary to my version of lupus....and the cumulative multisystem damage done by my unrecognised infant onset lupus going with only emergency treatment for decades hasn't helped, but my lupus has mainly been relatively mild so I've managed. The same is true of my version of POTS. But 5 years ago the set of chronic symptoms that had become severe enough to bring about the diagnosis of lupus included aspects of my version of POTS. Anaesthesiologists have been the medics who've been most forceful in flagging this up, but other consultants acknowledge the symptoms and take them into account when prescribing treatments & meds etc. Eg. my head of lupus clinic wants me to avoid Pilocarpine for sjogrens due to its effect on the autonomic nervous system (Systemic effects include hypotension and bradycardia, bronchoconstriction, bronchorrhoea and sialorrhoea) and I reacted extremely badly to the vasodilator nifedipine (I have blood pooling + acrocyanocis + simultaneous raynauds & Erythromelalgia)

In my experience, this overlapping of conditions is typical of immune dysfunction & connective tissue patients. And the fact of my inutero DES exposure and the profound effect that has had on my bod, further aggravates & complicates my version of all this

Because my medics & I are managing my POTS issues relatively ok, and these probs are on my medical record, none of us are anxious to put me through the hassle of more investigations. But, as I explained to PT above, with age and stability probs in my feet, I'm finding it a bit harder to respond safely when the blackouts come on. I know: those sessions leave me feeling awful too.

Anyway, yesterday the consultant took all this seriously enough to say it's time to start thinking about a referral to cardiology. As with all my clinics, am fairly certain cardiology will find other interesting issues combining with my version of POTS because I have an infant onset heart murmur + the ehlers danlos + immediate family history of severe early onset cardiac disease inc ruptured AAA. Basically, I feel I've got a big enough set of clinics taking care of me...I really don't want to add yet another unless I'm forced to...

I do hope you'll let us know how you get along at cardiology

πŸ€πŸ€πŸ€πŸ€ coco

Hi Barnclown! Second Purpletop and George Sharpe in recommending POTS UK and their website. I don't have POTS myself but I do have a form of orthostatic intolerance (my blood pressure can suddenly plummet when I'm upright), diagnosed by Professor Julia Newton in Newcastle. I've done a number of things to try to help myself and the most helpful have been increasing my daily fluid intake to as near to 2.5 litres as I can manage; my GP has prescribed me class II compression stockings (very sexy!) which have really helped me move about/walk more; and I bought a bed wedge, so that I am slightly raised from my waist upwards.

Barnclown profile image
Barnclown in reply to MrsMouseSJ

Hello there mrsmouse! The POTS uk is great: now I've read through it, I understand a lot better. So, your version of this is similar to POTS in some ways, but different in others. I have a feeling that many patients out there could straddle actual POTS & other forms of OI. My impression is that overlap is bound to happen - especially from reading the POTS UK info for GPs. P

I'm so glad these lifestyle management methods are helping you...I've been doing these things too for a long time now & I think these techniques are how I've been avoiding cardiology for so long - that + NOT worrying about my POTS symptoms....I've had to learn how to do this: the symptoms did freak me out when I was younger.

One thing: I have only successfully managed the stockings when am an inpatient...at home I have trouble coping with the stockings due to simulatenous raynauds & erythromelalgia meaning overheating....I need my feet bare in a cycle during the day & night...am going to ask rheumatology how to get around this one...have wondered about cutting the feet off the stockings or something).

Am so glad you replied!


Purpletop profile image
Purpletop in reply to Barnclown

Coco, there are toe-less compression tights, you could try those. It doesn't help everyone, compression, and the tights are quite difficult to put on, so I understand your reluctance to use them, though.

MrsMouseSJ profile image
MrsMouseSJ in reply to Purpletop

Yes, I now consider getting them on as part of my daily exercise routine! Then there's the whole hassle of negotiating a heavy-duty suspender belt....

Barnclown profile image
Barnclown in reply to Purpletop

Yes: thanks...it's all a bit tricky (typical me)...I really can't wear even tights with the erythromelalgia..I wear the so-called toe-less compression socks & the erythromelalgia makes them unbearable too. Am SURE there is a solution to this. Will talk to my nurse friends (e.g. my podiatrist nurse practitioner used to be an ICU nurse, & she knows only too well about my version of POTS + RP&EM...it's not the end of the world

I'm same - can hardly tolerate normal tights let alone compression ones. The pain of compression tights is awfully aggravating of small fibre neuropathy I find. Tx

Barnclown profile image
Barnclown in reply to

There we go: even more in common. Will aim to pass on any good tips I get on this...please remember me if you figure out a workable solution πŸ€πŸ˜˜

Good thinking! Consciousness raising about POTS has moved along since this thread. There is more understanding in the medical community. And more support for those seeking diagnosis and advice re management, eg here is just one good link:


There are others here on forum who have been formally diagnosed with POTS since this discussion...why not post about this here? Am sure you'd get good replies

πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

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