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PoTS

(14 Posts)
heartknot Thu 03-Nov-16 15:54:37

My dd (15) has been given a provisional diagnosis of postural orthostatic tachycardia syndrome and she is waiting to be seen by a specialist at the Royal Brompton Hospital.
I'm feeling really guilty because I wasn't really taking her symptoms seriously. I initially took her to the GP because she kept feeling dizzy, going faint and has passed out a couple of times. I thought it was probably to do with teenage hormones and the fact that she can be a bit dramatic at times. She's also been complaining of headaches and I've just been telling her to get on with it and given her the odd paracetamol.
We saw the paediatrician earlier this week and they did the lying down to standing test and dd heart rate more than doubled.
I feel terrible that I didn't take her seriously.
I'm also worried that her symptoms will become more debilitating, as at the moment she does mostly get on with things and lives life to the full.
Is she likely to get worse? Does anyone else have experience of this?
Thanks for reading

PurpleWithRed Thu 03-Nov-16 15:57:32

www.potsuk.org no personal experience but you might find help on the website of the PoTS group

heartknot Thu 03-Nov-16 15:59:42

Thank you, will have a look.

Marshmallow92 Thu 03-Nov-16 22:04:03

Had this strangely develop as soon as I got pregnant, the doctors never did anything for it though. Told me to take glucose tablets, it was nothing to do with sugar levels!!! It's stopped now I've had my DD. If I'd been standing still for a few minutes I'd go extremely dizzy and nearly hit the deck! I often felt faint at work if I'd been standing still for a while (job requires standing) so I'd just have to move and almost walk it off. I did read though that if you feel faint and dizzy, to drink a glass of cold water as it helps to bring your heart rate down. I don't think its debilitating, as I say I'd walk it off or just go and sit down where possible and just adapt when you need to smile hope that helps smile

Mistletoekids Thu 03-Nov-16 22:05:29

This iswhat deliciously Ella had, if you want to give your daughter someone to look to for inspiration
Good luck
X

heartknot Thu 03-Nov-16 22:54:47

Thank you for your kind replies

MyVisionsComeFromSoup Fri 04-Nov-16 13:51:27

DD2 has PoTs, started having obvious symptoms at 13, now 18 and at uni. She faints once a week on average, sadly doesn't get any warning, and as she can also faint while sitting, isn't allowed to drive sad.

In her case, lifestyle management helps a bit (drink lots of water, add lots of salt to food, regular bedtimes/getting up in the morning, minimising stress as much as possible). Exercise helps massively, and if you're in the position of not having become deconditioned, keep up exercise as much as possible - DD aims for at least 30 minutes of upright aerobic activity per week.

Medication helps, but it's very much trial and error, as what works for some, doesn't work for others. IME it very much helps to be seeing a PoTS specialist - DD has a "very much not advised" tablet regime, but one that works for her, as her consultant is happy for her to experiment with doseages. Other consultants are not as flexible.

Long term prognosis? Lots of people grow out of it in late teens/early 20s, especially if it started following illness. For the rest, it's a long term thing, that you can (pretty much) manage the symptoms for. DD2 gets DLA at the moment because of how much she's affected, but she's more or less managing at uni. I'm trying very hard not to think about life after uni, as variable medical conditions aren't especially attractive to employers, but we'll deal with that when it's time. In the meantime she has a big circle of very supportive friends, school, and now uni, make allowances where needed, and I'm there on the end of the phone several times a day.

A positive attitude (for both you and your DD) are vital IME - DD refused to let it beat her, so on very many occasions I'd drive her in to school, and not even have got back home before they were ringing to get me to collect her, but she was back again next day, determined that she was going to last out at least one whole lesson. Took a while to get there, and we've had far too many times when she's been lying on the floor sobbing about how rubbish her life is, but now, I think both she and I are in a position that we know as much as we can about how it affects her, what she can (and can't) do about it, and how to make sure she gets the support she's entitled to.

HTH a bit

heartknot Fri 04-Nov-16 15:55:57

Thank you Myvisions.
At the moment my daughter really doesn't seem that bad compared to the stories I've been reading online and from what you have said about your daughter.
My dd definitely feels faint when she stands up and occasionally when sitting but has only passed out a couple of times. Her heart rate goes from approx 50bpm to 105bpm on the stand test.
She is very active at the moment, doing 4 hours of dance a week as well as P.E. once a week and games afternoon at school. Do you think she would manage this if she really has PoTS or do you think her symptoms are better because she is so active?
Its probably hard for you to answer, I just have so many questions going around in my head and I need to be patient until we see the Consultant at the Brompton!
Thank you

MyVisionsComeFromSoup Fri 04-Nov-16 16:20:42

Not fainting is much more common than fainting in PoTS afaik, the diagnostic test is heart rate rising by more than 30/40 bpm on standing, the symptoms themselves are very variable. FWIW, DD danced for an hour and a half every week, and completed two DofE Gold expeditions in the last 12 months with a couple of hours walking training (with a 20kg rucksack) every week too.

It's quite likely your DD is managing so well because she's being so active, anything which strengthens the calf muscles is good (which helps keep the blood moving round the body rather than pooling in the legs), dance was v highly recommended by her paediatrician.

Another place for good info (and they have a helpline) is STARS, I'm on .y phone so linking is tricky but if you google stars syncope you'll get them. Their conferences have top expert speakers, and the last couple we went to were mainly pots focussed. The helpline was such lifesaver when dd was first I'll (and they pulled some strings and got us a specialist appointment when the local paediatrician we had decided it was all in DDs head)

MyVisionsComeFromSoup Fri 04-Nov-16 16:25:38

Also are you seeing Dr Till at the Brompton? She spoke at a stars conference last year or the year before about teens with pots, and really seemed to get the particular difficulties they have at that age, with school etc

And remember that most if the stuff online is about the really bad cases, there's not a lot about those people who are mostly managing!

heartknot Fri 04-Nov-16 18:42:42

That's really reassuring, thank you! Yes it is Dr Till we are seeing, so that's good too.

dramaqueenforever Mon 21-Nov-16 13:04:49

Hello OP my daughter who is 16 also has a high heart rate on standing and walking. Standing from 65 -120 & walking up to 160. Feels really dizzy , lethargic, obviously has a lot of trouble walking around can't do what her friends do anymore ..ie walking back from parties , walking into town and we live in a very hilly part of UK! We haven't yet got a diagnosis of pots but at her tilt table test last week it was written all over her notes in big writing.
So the thinking is along those lines .she also has some strange gastric symptoms and has lost nearly 10 kg in weight over the last four months because she has lost her appetite. I'm trying to get her to exercise as much as possible especially after reading your posts it's made me realise that driving her around everywhere probably isn't the best thing. She goes to a personal trainer once a week (that will stop due to money) and swimming once a week. That helps her feel better. Has came on after a stomach bug. I feel really sorry for her she's doing her GCSEs and it is taking its toll on me DH and DD2 as well. We are nearish to London on the south coast and are hopefully seeing a cardiologist soon but should I ask for a referral to a specialist in London?

MyVisionsComeFromSoup Mon 21-Nov-16 14:34:25

dramaqueen - we see Dr Nick Gall (he's based at Kings in London, but also sees people at Queen Elizabeth in Farnborough) - he really knows his stuff about PoTS, but has ridiculously long waiting lists. He will see DC from 16, and is very happy to refer to other specialists who know about PoTS (eg sleep consultant, gastrenterologist) so you don't need to start from the beginning with explanations, and they're happy to accept that whatever it is might be caused by PoTS flashback to a paediatric gastro who decided that DDs vomiting could only be caused by constipation and wouldn't listen to the possibility it might be gastroparesis.

After an initial appointment you'll generally be handed over to the nurse specialist (who is very lovely but a tad disorganised), and prescriptions are "collect from Kings only" which is potentially a bit of an issue. They do do 6 months worth at a time though, which minimises the trek out to Denmark Hill.

There's also someone in the Medway area if that's easier to get to? I can find out the name if you like. Can't think of anyone who would be south coast, but I can ask around if you want to PM me your nearest hospital?

Don't discount consultants who say they are over 18s only, many of them will see over 16s if they are happy to be seen out of paediatrics, plus with long waiting lists, you might be more or less there anyway.

if you haven't already found them then POTS UK and STARS are both brilliant resources (and STARS has a helpline), plus googling dysautonomia (as it's called in the US) brings up a whole load more info, remembering that treatment etc is different over there.

In terms of general advice for your DD, increase water intake, and keep up with as much exercise as she can manage, it's much harder to recover from deconditioning than to not get deconditioned in the first place as with so much in life. On the positive side, PoTS following a viral illness is more likely to be outgrown by early 20s, and even if not, IME it gets easier to manage as you work out your triggers and symptoms.

PenguinsandPebbles Mon 21-Nov-16 14:51:09

39 here and I had my POTS diagnosis when I was 22, so have many years experience of the thing. I was lucky to be under Prof Mathias man is a legend in POTS circles

Strong leg muscles make a massive difference as it helps circulate the blood more efficiently, blood pooling in the legs can be a nightmare, stronger leg muscles less pooling. Flight socks help with this too.

Water, water and more water - hydration is key I drink all the time even at night and second the deconditioning that takes you back to day one (going through this at the moment and my frustration levels are so high) I sleep with 4 pillows smile and this helps tremendously.

it doesn't mean your life is over if your diagnosed with POTS, it does take a lot of work and trial and error but it doesn't mean your life is over.

I would also ask them look at EDS it's often associated with POTS along with mast cell activation syndrome - not so well known as being associated I'm being investigated now for this as they think this may be why I've experienced 7 miscarriages with no live births and have constant allergies that seem to appear from nowhere

Keep posting if you have any other questions, many POTS patients are more akin to medical proffesionals than patients smile

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