Anyone with POTS

[Loving-life]

Hello just wondering Is there anyone on the site with POTS? Teenager just got diagnosis and told there Is no cure and just to live with it 😔. Does anyone have any techniques that work for them with the fatigue and dizziness? She also has low blood pressure.Thank you

[Aries17]

Eat little and often, salty foods are very important (salted crisps are always a go to snack) take extra care in the shower and get a shower stool to sit on if you can. Be cautious and don’t stand up too quickly. Sleep with head slightly elevated. Laying on the floor with your legs up against the wall can help with blood pressure.

These are things that have all helped my brother. Hope your daughter is managing okay.

[Loving-life in reply to Aries17]

Thank you for your message and kind thoughts. We will give them a try. Merry Christmas 🎅

[jeanjeannie50]

Take a look at this talk on tips to help with POTS by consultant Dr Sanjay Gupta, who works at York Hospital in the UK:

youtube.com/watch?v=d7mY4hM...(Not working as expected?)

Jean

[Loving-life in reply to jeanjeannie50]

Thank you have seen talks by this dr before so will have a look. Have a lovely christmastime 🎄

[Adamj]

I seen people recently with POTS telling people talk to a neurologist to get better help with POTS

[Loving-life in reply to Adamj]

Never thought of that. Thank you and have a lovely Christmastime .

[MummaSoap]

Hi Loving-life

I haven’t formally been diagnosed with POTS but have suffered since my teens with the symptoms long before my heart condition became a factor. It’s only recently that my consultant has agreed to explore this aspect of my symptoms (due to pregnancy and only a recent diagnosis of my heart condition).

When I had lots of tests and nothing was found, the specialist told me “TUC biscuits are your new best friend, try to carry a few with you wherever you go”.

I’ve always had low blood pressure, and I can’t just jump out of bed or off the couch otherwise more often than not, I tend to hit the deck if I don’t listen to my warning signs.

Before getting up from bed, I do my physio exercises and then slowly stand up before moving.

Sometimes I feel dizzy or unsteady whilst sitting and my friend who is a nurse also recommended that I push the balls of my feet into the floor as hard as I can and squeeze my calves which does help alleviate the symptoms now and again.

I definitely find grazing helps, going at a slower pace, and also not having my bath/shower too hot. I would also say making sure she gets plenty of rest when she feels she needs it. I lived across the road from my school and sometimes I would go home for a nap when I had a free period - it’s amazing what a 15/20 minute cat nap can do!

I still managed to have a “normal” teenage life and hopefully she will be able to as well 🙂

Please pass my sympathy onto your daughter, I know how frustrating it can be but she can and will find techniques that work for her to manage her symptoms, tell her to be patient with herself (easier said than done I know).

Let us know how you both get on.

Best wishes

Soap

[Loving-life in reply to MummaSoap]

Thank you such great advice. Merry Christmas

[MummaSoap in reply to Loving-life]

Thank you, Merry Christmas to you and your family too 🎄

[Milkfairy Heart Star]

Hello,

Your daughter may find this group helpful.

potsuk.org/

[Loving-life in reply to Milkfairy]

Thank you for your reply. Merry Christmas

[TheLegalWriter]

No confirmed POTS but most definitely the symptoms here. I started wearing compression thights up to my upper legs and that makes a difference. Ivabradine might be prescribed by a cardiologist to help maintain a slower cardiac rhythm.

[Loving-life in reply to TheLegalWriter]

Thank you. Merry Christmas

[Yogi1950s]

I used to work with a girl who had POTS. I understood the signs to look for and ensured that I always had a 6 pack of ready salted crisps in my desk. Remaining calm and reassuring were the keys in the event of an episode..... oh and the crisps. Followed by letting her/them sleep it off.

[francesw47]

Hello and welcome to the forum. None of our family has POTS but my daughter used to be a gymnast and loads of the kids had it. Does your daughter also have Ehlers Danlos syndrome (hypermobile, stretchy skin etc)? It was the Ehlers Danlos that brought the kids into either dance or gymnastics as they were the most incredibly bendy / stretch people! Both are manageable. We used to keep bags of salty crisps, those mini cheddary things - anything salty and loads of water. You could see when one of the gymnasts had a POTS turn - and the results of sitting down, drinking water and eating salt usually did the trick.

Hope she learns to manage this quickly.

[Loving-life in reply to francesw47]

Thank you such great advice. Merry christmas

[kushami36]

I just wanted to say that although there is no “cure”, there are many treatments and strategies that can help. If your daughter is not getting any support or advice from the specialist, please seek out someone better. PoTS UK is an excellent resorce and there are some good dysautonomia specialists out there (unfortunately often with long wait times).

While not everyone improves, many do see an improvement or even go into remission once they find the right treatment strategy. Also, teenagers may “grow out” of POTS.

Yes, you have to “live with it”, but you can take action and get medical advice that will make “living with it” easier and less stressful.