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POTS

10 replies

YellowTelescope · 18/07/2018 10:58

My husband has been having tests and his doctor has referred him to a cardiologist for more tests as he suspects Postural Tachycardia Syndrome. I've never heard of it before and after doing some googling I feel slightly reassured but the one point that sticks out is that it's described everywhere as debilitating. I was just wondering if anybody could share their experiences? I've no idea how common it is.

OP posts:
Synecdoche · 18/07/2018 11:05

Hi Yellow, I have POTS and happy to answer any questions 😊

It is a syndrome and as such symptoms exist on a spectrum and affect people in different ways. Some people are able to continue with their jobs, childcare etc and maintain their usual lives, whereas others experience more debilitating symptoms. I think the official statistic is that 25% of those with POTS experience symptoms to such an extent that they are unable to continue with work/education. The impact of symptoms of life has been likened to that of COPD (all facts from POTS UK).

One important thing is trying to ascertain whether a POTS diagnosis is primary or secondary. Does your husband lose consciousness? Is he scheduled for a tilt table test?

Synecdoche · 18/07/2018 11:08

Also, as with the case with any diagnosis of chronic illness, educating yourself about your condition, learning to recognise your triggers and modifying your life to mitigate them, accepting your new diagnosis and the impact it will have on you and your family's lives and implementing the recommended self-management consistently is all extremely difficult but important.

YellowTelescope · 18/07/2018 16:39

Thank you 😊 I appreciate your insight, I'm sure my husband will find it reassuring to know more about it.

He's not seen the cardiologist yet so not sure what tests they'll perform but I guess the table tilt test is quite common?

How long did it take for you to be diagnosed? My husband is almost 31 and has been told he suffers from "migraines" which was never properly diagnosed, just what they ended up calling his condition after seemingly running out of things to test for! He's seen a neurologist who is currently repeating the treatments he tried when he was 15 because there's nothing left to try. We're hoping that this might finally be the diagnosis which could be the road to treating his horrible symptoms; after doing some quick research this morning he suffers from the majority of the symptoms. He doesn't lose consciousness, but he gets extreme dizziness and disorientation.

How do you manage your symptoms, do you take medication? How much do you feel it affects your quality of life?

OP posts:
Synecdoche · 18/07/2018 22:22

I was very lucky with my diagnosis - it took about 8 months from first experiencing what I now recognise as POTS symptoms to formal diagnosis. It was so quick for me I think because my symptoms came on quite acutely so I was hospitalised and had all the tests done as an inpatient which speeds things up. I am now under the a national Autonomic Unit for management. However, we've now realised that my POTS is secondary to hEDS and it has taken about 20 years to get that diagnosis!

In terms of self management, I do the usual recommended things: raise the head of my bed so I sleep at an angle, leg strengthening exercises, drinking a pint of water before trying to sit upright in the morning, increasing salt intake (only as recommmended by a doctor), increasing fluid intake, eating 'little but often', wearing medical compression tights, calf pumping upon getting up/standing, avoiding triggers of prolonged standing, heat, eating full meals and, for me, sugar and caffeine. I tried these lifestyle changes for about 18 months before I was put on medication, which I now take.

It has hugely affected my life, but this is in the context of my EDS and the other autonomic issues that regularly accompany POTS. It affects different people in different ways. I lost my job, my place on my masters, many friends, have had long periods of hospitalisation and being housebound, have been at times unable to be left alone or able to go out unaccompanied, have lost five stone, now use a wheelchair when outside of the house, been unable to travel; in short, it has completely changed my life. I experience my symptoms every single day to different extents: there have been times I have been very ill and others when I've felt close to being well again. Fatigue is a really annoying symptom, as your body is working three times as hard as a normal person's body, so it can be frustrating to feel so tired all the time. POTS also flares badly when you have a 'normal person' illness to deal with on top - a chest infection put me in hospital for 2 weeks! It's this unpredictability I find most difficult to deal with.

I would recommend that you perform the 'poor man's tilt test' or active stand test at home with your husband - at different times of the day and under different circumstances (first thing, after eating, fasted, in hot weather, evening, when feeling symptomatic etc.). Get your DH to lie down quietly for 10 minutes to get a good resting HR. Then get him to stand up and take his HR at 2, 5, 7 and 10 minutes. A POTS diagnosis requires a sustained rise in HR of 30BPM+ or a sustained HR rise to 120BPM+ (usually in the absence of any change in BP but unless you happen to have a monitor at home you won't be able to tell!). Take these readings to your GP/specialist when you go.

I really hope your husband gets some answers soon - happy to help further if you have any more questions. Keep pushing for answers and testing and make sure you get referred to appropriate doctors with an interest in POTS (there's a list on POTS UK website). There will undoubtedly be questions raised about your DH's mental health and stress/anxiety but stick to what you know in your guts to be right and don't allow yourselves to be fobbed off - many POTS patients are misdiagnosed with anxiety/panic disorder owing to the similarity of the physical manifestations of an episode.

All the best to you both. At the end of the day POTS can be life altering but is not life threatening and life can go on, albeit sometimes in a different way to which we imagine for ourselves 💐

Synecdoche · 18/07/2018 22:29

Paragraphs 😡

P.S. In terms of testing I would ensure he gets a TTT, 24hr ambulatory BP monitoring, ECG, echocardiogram, full bloods (including coeliac and B12 as these can cause neurological symptoms), short synacthen test locally and, if necessary, ask to be referred for autonomic testing at a national centre. I'd recommend reading up on hEDS and if anything rings bells to get a rheumatologist referral as well - they often go hand in hand and it isn't as simple as just seeing if you can bend your thumb back to touch your wrist!

Potsie · 18/07/2018 22:39

I also have POTS secondary to Ehlers Danlos Syndrome, so hopefully I can help answer some of your questions too. The syndrome affects all parts of the autonomic nervous system and as well as following all of the advice that Synecdoche has mentioned, I’ve also seen a variety of specialists to help with the symptoms, including a breathing physio (as apparently I was breathing incorrectly) and a dietician. After many years of misdiagnosis and a huge effect on my life I feel that all of the treatments are finally starting to make a difference and I am coping a lot better. I wish your husband better and good luck with all the tests

Synecdoche · 18/07/2018 22:48

Hi fellow potsie - can you tell me more about the breathing physio? What kind of observations/symptoms led to this referral and how is it helping you?

I often find I never know if something is abnormal or not because my body has 'always bent this way' or 'always been like this'!

Synecdoche · 18/07/2018 22:50

Also what kind of things has your dietitian helped you with? As much as I really like and appreciate mine I'm not sure we are making much progress! Thanks 😊

Potsie · 19/07/2018 12:04

Hi Synecdoche,

It was discovered when I did my exercise tolerance tests that my oxygen levels were too high as I was overbreathing. My body was constantly expecting this level of oxygen and when I couldn't provide it because I was talking or exercising, it made me feel very breathless. I have learnt to take smaller breaths and breathe through my nose and I feel much better for it.

As for my diet, I was really struggling with my blood sugar levels. I now eat low carb meals six times a day and follow a low GI diet. And I now have constant energy levels rather than complete ups and downs and my headaches have reduced. It has really helped. What changes have you made to your diet?

Synecdoche · 19/07/2018 13:50

Thanks Potsie. That sounds interesting regarding the exercise tolerance test - I've never had one of those - and I'm glad you have found something to help you.

I am currently on a low FODMAP diet but really struggling with reactions to random foods and feel it is only treating symptoms. My diet is too restricted atm to try low carb but perhaps it is something to work towards.

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