POTS - Postural Orthostatic Trachycardia Syndrome

[Magicpaintbrush]

I'm hoping for some suggestions to improve my DD's quality of life and reduce symptoms, by people who have experienced this first hand. DD has chronic fatigue, brain fog, faintness, dizziness and an erratic heartrate when going from lying down to sitting to standing. She has recently been diagnosed with Hypermobility with muscle weakness, for which she is receiving physio, but our G.P suspects she also has POTS as a comorbidity - I am currently arranging a referral to cardiology for diagnostics. In the meantime she is off school yet again today, and her current attendance is 44% which is terrible - it can't be helped, she can barely function in the mornings particularly. I have to help her sit up in bed, help her out of bed, help her to the toilet etc and very often she simply feels too poorly to go into school - I am so worried she will fail her A-Levels, she is Year 13.

Currently I am following advice online to keep her well hydrated, use hydration salts, compression socks to increase blood flow, avoiding heavy carby meals to avoid too much blood being directed to her digestive system, trying to get enough rest, but also trying to make sure she doesn't waste away in bed, sugar reduction - I am out of ideas and none of these adjustments have made any difference, she is off school again today and currently ill in bed/sleeping.

We have been trying to get to the bottom of this for over a year. It may be relevant that she has experienced significant trauma over the past few years - when these symptoms began her dad was about a year in to his battle with bowel cancer, which was very traumatic, and he has since sadly died. Prior to that she was bullied at her former school. I don't know whether this trauma has played a part in the onset of this condition.

If anybody has any suggestions that have worked for them I am all ears - desperate for some advice, thank you.

Has the GP not prescribed beta blockers?

Hi op.
You can test her for POTS yourself if you have a heart rate monitor (that go on the finger) and a blood pressure monitor.

Its a lie to stand test. You can Google it.

My DC was tested for it by GP, we don't think he has it as it goes but has spent his teenage years feeling dizzy on waking.

Next step is an appointment with a physio who is specialist in neuro/cervical dizziness. Could this be something to look into? I am in the south can PM you the name if it helps.

Also, maybe you already know this but one of the big co-morbities with these conditions is neuro diversity. My DC is autistic so I've looked into a lot of the research on this. There are also two people I follow online who might be useful to you:

Little mis-diagnosed (consultant doctor in the US)

Dr A - GP in the UK.

There may also be some info with the Ehlers Danlos Society

I have POTS, although I don't have hypermobility like your daughter and I didn't get ill until I was an adult. I also don't have chronic fatigue so I find a manageable amount of exercise really helpful. POTS doesn't seem to have just one cause so there seems to be a bit of trial and error in what helps particular people.
My GP referred me for a tilt table test (which was done by a geriatrician) and my medication was prescribed by a cardiologist. I tried fludrocortisone, which helped until it didn't, and now I just use midodrine, which makes a big difference. I didn't notice much of a difference with adding salt to my diet but I do drink a lot of water. I occasionally use compression tights, which I much more useful than the socks because they go much higher.
When I first got ill I lost my job as a teacher and it took me about a year to be well enough to work or study again. (I still wouldn't be able to return to teaching.) Now I have a job, although I often work from my bed, I have a family, I go places, I see friends. It might be that you're daughter can't manage A-levels this year but that doesn't mean she'll never do them. Can she drop to 1 or 2 this year? Make sure she has access arrangements for any exams so she can have rest breaks and anything else that would help.
I know lots of people hate it but I found CBT very helpful. This wasn't because my POTS wasn't real, but because my anxiety around not being able to be independent and falling in public was making my POTS symptoms worse. (Stress is a trigger for me and lots of people.) I found this most useful around 18 months after I got ill as I was ready to process things.
It sounds like you're trying lots of sensible things but I'd push for a proper diagnosis so your daughter can try medication. This really helped me. If your daughter needs to take a year out from school to work out how to best manage her symptoms, it's tough but not the end of the world. I don't have any answers about the exercise/rest balance but you're right that deconditioning is bad. Is the afternoon/evening easier for your daughter to do a bit more? Sometimes I try YouTube exercise videos for POTS or chair based work outs.
I really wish I had a clear answer for you for something that you could do that would make things better! Hope you find a good way forward.

My DD is recently diagnosed with POTS and a couple of things that are rarely mentioned are:

there’s a field of research looking into its cause being post-viral (as well as being hereditary). So, some management advised to deal with CFS is the same for POTS. DD also has little packets of salt for emergencies and electrolytes. I can’t recall the meds she’s on.

Another is the thought that blood pooling isn’t just in the feet but in the pelvis, too. Particularly so for women. Which is perhaps why a PP says tights help. Perhaps some kind of cycling shorts, or even shapewear may help?

My DD has hypermobility, muscle weakness and pots. She drinks 3.5 - 4 litres a day, has salt tablets, wears compression leggings / shorts (skinz are great, available from sports direct at a reasonable cost). Pots can be caused by different things, so first thing is to request the GP does some blood tests to check - Pots UK has a list of things to rule out on their website, including vitamin and mineral deficiencies and andrenal issues.

She has a healthcare plan with school which covers what is needed eg somewhere to lie down if needed, what to do if she faints, attendance etc.

Her school make school work available online so if she is off she can catch up on work missed. There are many things school can do - she doesn't go in for form time in the mornings, just for lessons. She is allowed to go home when she doesn't have lessons, or to go and lie down somewhere in between lessons if needed. She has 1-to-1 support for school trips (if she goes at all!).

I would start with the gp and ruling out other causes, while meeting with school to agree adjustments that might work.

I have POTS and inappropriate sinus tachycardia, propranolol has massively helped me. Plus minimum 3 litres of fluids/electrolytes a day and like you say reducing carbs and meal size. I find waist high compression much more beneficial than just socks.

At work I've been supported by occupational health with reasonable adjustments, hopefully school can offer your dd similar.

I have pots i take bisoprolol, drink about 3 litres of water a day. But honestly the thing thats helped me most is significantly reducing carbs.

Thank you all so much for your advice, I'm so grateful. I will re-read through everything again and make use of anything mentioned that I haven't already done - compression tights for example, I am going to go and buy some right now. I got DD to drink 500ml of Normalyte hydration salts first thing this morning (disgusting apparently!) and sent her in with lots more water. Very interesting to hear that reducing carbs can be so effective. And also good to hear what meds other people are on - I'm hoping there will be some meds suggested once she gets an appointment with the cardiologist, providing her diagnosis comes back positive. DD's school have amended her flexi-time and in addition to weds and fridays where she is allowed in after break time (11am) because she has no lessons during the morning on those days, they are extending it to all weekday mornings for two weeks to see if it improves her overall attendance. She managed to get in today which is such a relief. I actually had to go to a Year 13 parents talk yesterday evening and the very first thing they started on was attendance and how once it goes below 85% your A grade drops to a C - well DD's attendance is currently 44%. I was sitting there listening to this and I could feel tears coming, I just felt so much despair.

Thank you all again for your amazing advice xx

My 18 year old DD has a diagnosis of POTS (amongst many other things). She has just finished Year 13 with excellent A-level results, there is hope!

We had a horrendous time in Year 10 and 11 with about 40% attendance, school was just not doable with horrific anxiety around her POTS and feeling unwell and she taught herself a lot of the GCSE curriculum.

My DD is already on bisoprolol as she also has Marfan Syndrome. She was prescribed salt tablets, not sure how much they help to be honest. We have found the medical professional fairly unbothered by the POTS and most people say you just have to manage it with lifestyle changes. Perhaps that is because she has more pressing medical concerns though that they are treating.

We have learned over the years that managing DD's environment is the best thing, avoiding queueing or standing still for any period of time, always taking a water and trying to eat regularly. although as DD also has ARFID this isn't easy.

I would not expect much from an official diagnosis in my experience. What has helped us most is increasing DD's confidence and managing her environment. There was a time I never thought she'd be able to take driving lessons, work or live outside of the home. Now she drives, works although very part-time and is planning on heading to uni after a gap year.

I am sure there is a link with her anxiety and POTS.

@Magicpaintbrush My DD loves these electrolytes - Liquid IV - apparently the raspberry lemonade flavour is the best! https://www.amazon.co.uk/Liquid-I-V-Hydration-Electrolyte-Vitamins/dp/B0F8HPSM35/

hope you and your daughter get some progress soon - school rules sound awful, I’m sorry.

ETA - she says the sugar free ones don’t taste good, though.

I had a student with this a couple of years ago. She did manage to get her A-levels although probably not at the grades she'd hoped. It helped her to have lesson materials emailed and to see me after school one day a week instead of lateness detention.

You might look at UpLearn if it covers any of her subjects. You can definitely do that lying down in bed.

My DDs attendance is currently 60%. We agreed with the school that attendance would not be mentioned as long as she was on track with her grades. She is currently predicted A*/A and she keeps it up with independent study at home - when she is too wobbly to go in, she can still work at home, and she only needs a few hours to catch up on a whole day missed. Her teachers make sure she knows what is planned so she can use textbooks / revision guides.

I hate all the attendance crap from school/college! Jeez it's not helpful if uour child is ill. School need to be massively helping /supporting not piling on stress/guilt!
Sounds like lots of good advice on this thread OP - good luck to you - i know it's rough but atleast sge has a super mum in her corner! X

Ivabradine is another medicine that is used off label for pots.

Furthermore: with fatigue, brainfog, hypermobility and pots, have you checked into post-covid/postviral fatigue/me/cvs, eds, pem (and what not to do with pem, like push through) and even neurodiversity? These things seem to together often. Whereby neurodiversity can mask trauma and vice versa

I'm assuming everything else that can cause fatigue has been tested? Vitamins, iron, ferritin, heart, lungs, thyroid, etc

And good luck. Illness is not easy

Hi, yes she has had all of her bloods tested and apparently isn't low on anything, although I thought her ferritin levels were not ideal so she is on iron tablets just in case (they haven't made any difference to how she feels).

There was a question over whether she might be ND, her long term CBT therapist thought she might be so we did a referral for an ADHD assessment and that was about 14 months ago and we have heard nothing whatsoever back - standard these days. Once we have firmer idea about the POTS, diagnosis and plan, my aim is to go back to the ADHD and push for an assessment. My neighbour has a relative who is a super dooper high up psychiatrist type who does private assessments in accordance with nhs guidelines - apparently these companies popping up everywhere who do adhd assessments are often unaccredited and the nhs refuse to acknowledge their diagnosis and won't treat on the basis of that, and people who have spent thousands are left out of pocket with still no help.

Good news is that her school have said they will trial her going into school at 11am for the next two weeks to see if it increases her attendance overall - she managed to get in on Friday by doing this, so fingers crossed it helps. Bless her, she was watching biology a-level videos on youtube until late the other night - super difficult stuff that melted my brain. She also does her physio right before bed as that seems to be the best time for her and she is finding it soothing to do to gentle music, so hoping it may boost her wellbeing as a kind of mindfulness type activity as well.

Thank you all so much for all of your advice and sorry to hear so many people are affected by this.

I am sorry OP. Are the school wanting her in daily? If this is too much for her, please don’t. Pushing through causes more crashes. I got POTS and a number of other health issues after a mild covid infection. The absolute biggest trigger is overdoing it and that can vary between days too. PEM/PENE is brutal.

I had post viral (long Covid) POTS and inappropriate sinus tachycardia- Ivabradine worked very well for me. I chose it as apparently beta blockers can make you feel more tired and this was the last thing I needed.

I also have ADHD. Firmly believe there is a link between all these conditions.

Oh and school should back off with anything attendance related- there is a huge risk I think of ending up with ME or long term Chronic fatigue. She needs to operate within her energy window and no more.