PoTS Diagnosis

[Elguajiro]

19 y.o. Granddaughter is in hospital after bouts of fainting and dizziness and has been diagnosed with PoTS.

I would be grateful for any advise on how to handle it

[Judithdalston]

I have recently been diagnosed with PoTS/ postural hypotension even though 70, but as a result of catching the virus prevalent 3.5 years ago. Pots is said to be more common in young women. But it means I have done lots of research on it: have a look at two websites for PoTs charities

ww..standinguptopots.org…USA, can be a bit difficult to navigate for eg I had to know there was a page on the subject I was looking for and added ‘ /orthostaticintolerance’ to the name to get that page as couldn’t find it in menu. But otherwise very good.

PotsUk.

Both give guidance on ‘conservative treatment’ like compression garments ( try cheap egs like socks from Temu to see how she gets on with them), clenching lower muscles while standing in queues, keeping well hydrated and possibly twice the salt normally recommended ( I can’t do that as have BP on resting) , and types of exercise like swimming. The US one has more drugs mentioned.

There is a research partnership group of a large no.of GB university hospitals working under the project name of Locomotion the LoCo being abbreviation of Long Covid who are looking at the various dysfunctions of the autonomic system that causes PoTs and other BP\ HR problems and a range of symptoms. There is at least one web podcast from the Leeds leads, and links to some recent published research. Plus one of the drs.involved has a teenage daughter who has PoTs and often refers to her symptoms etc. Might not be much help, but if it just means more drs. become aware of the syndrome, and know how to advise re lessening symptoms, the LoCo project would be a success.

[Happyrosie]

the same with my then 14 year old granddaughter. No treatment, just to be aware. She’s now 17,all good!

[Elguajiro in reply to Happyrosie]

Aw thank you 'Happyrosie'. Any change in diet etc, or just carry on normal?

[Blearyeyed]

Look up the information on the POTs UK website.Have they given her some Self Care advice?

Drinking more water is often the first piece of advice , she should have a water bottle with her at all times even sitting in the classroom so this may need discussing with the school, and taking a quick drink before changing position e,g: sitting to standing, getting up in the morning, whilst exercising. This reduces heart rate spikes and moments of lightheadedness or near fainting.

Moving more slowly from one position to another, including turning the head. There are sometimes positions and movements that people with Pots are better avoiding like bending down to touch their toes or picking things up off the floor then standing too quickly, spinning around .

People with Pots often need a little more salt in their diet each day because they need to drink a lot of water and it helps to keep the electrolyte balance right. This isn't a lot , so it's worth keeping a food diary to check if the person eats a lot of salt already. It's usually about a teaspoon more salt than the daily recommended amount for someone of that size and level of activity,

Sitting with your legs up when you can helps to reduce the rise in Tachycardia , standing still too long isn't particularly good either , so she may benefit from having a stool to sit on at school in certain classes were activities are done standing for long periods, like science or P.E.

Wearing compression clothing is often useful. It can improve the circulation to the lower limbs and reduce the spikes in heart rate when standing or changing body positions.

Learning deep breathing techniques helps you to self reduce your heart rate . Doing some deep breaths as well as drinking water before getting up from the bed, floor or a chair and then pausing and drinking again whilst standing still before walking reduces how often dizziness or near fainting occurs.

Exercise helps as better muscle tone improves the circulation and reduces the spike in heart rate. But choosing exercises that keep the head in a steady position are better. Things like Yoga , Gymnastics , certain Gym and Training rotations, weightlifting , running and jogging, hill climbing and team sports can aggravate the condition triggering more symptoms.

Walking and Nordic or Power walking , Swimming ( but taking care to get in and out of the pool with pauses and drinking water before getting out) , Rowing , Cycling , isometric exercises , pilates , Tai Chi and Qigong are all good options.

Making sure her P.E teachers know about her condition and make sure they remember not to get her to do certain exercises , that they know she must be allowed water to take part in classes and have a seat and sit out for short rests during classes ( usually set times like 5 minutes in every 30 mins if activity) . This needs discussing with the school.

Pacing daily activity is vital.

People with POTs need more balance between rest and physical or mental activity, if they do too much they suffer more symptoms and periods of fainting or dizziness , fatigue or pain. Remember Stress can be a good thing not just a bad one, as Stress is just physical or mental activity that is too much for your body or brain to handle at its current health level.

So a day trip or evening out with friends can trigger the same symptoms as an exam or coursework deadline.

It can be frustrating at first to have to keep resting or take things slower when you want to keep going or having to rest when you still feel ok makes you feel quite useless.

It's even more frustrating when this happens to you when you are young so she may feel angry or upset sometimes or resistant to the need to change it do self care things , so family , friends and school teachers need to be considerate that she can occasional have a bit of a meltdown or a mood swing.

It's good to let her know that all people with POTs feel like that sometimes and find it hard to get used to a slower pace but when you do life gets easier , and having POTs certainly doesn't make you different or useless, in fact having to cope with it everyday and still managing to be the person you want to be proves your probably a lot stronger than most of the people around you.

Light nutritious meals help. Extra salt may be required so healthy foods with salts and minerals are good.

Have five smaller portions a day instead of three big meals.

Big meals put the Autonomic nervous system into Digest mode and make it harder for a person with Pots to be active afterwards as the heart rate is less able to respond to change , people with POTs are also more likely to suffer from Post Prandial ( after eating ) sleepiness.

Reduce processed sugar , artificial sweeteners, processed foods and too many 'white' carbs these cause blood sugar spikes that increase the heart rate.

There is a lot on the charity website that will help you all and it's probably a good idea for you just to give her the links so she can read about the stuff herself , as if I remember being a teen , and how my teenage daughters reacted to having Pots, even after living with a Mum with it, they still don't like getting pamphlets or being " forced" to read stuff or follow rules given to them by their elders!

Keep coming back if you need help , and also see if there is a POTs online support group for her to join with other young people which she might find helpful when she has a question and feels ready.

Take care and Pace Yourself, Bee

[Elguajiro in reply to Blearyeyed]

Thanks for the info Bee. I have passed on your info to her so its now up to her, I do hope she heeds the advice

[kushami36]

PoTS UK has peer support groups. She might find it helpful to meet other people the same age.

I hope she’s home and feeling a bit better.

[Elguajiro in reply to kushami36]

Yes she is home now thanks kushami36, still having tests and worrying about how she will do at work