POTS recovery how long?

[blackcandle]

My 21 yo dd has had POTS for two years now. I want to know if anyone has recovered from it and how long does recovery take?

From everything l have previously read about it, there isn't a cure.... but lifestyle changes and managing the symptoms can lead to an improvement in quality of life

I don't think POTS is curable. Pretty sure it's a life long condition that you just have to manage.

It's definitely life long, I have it and dd has it. Is it just POTS she has as it often goes hand in hand with autoimmune stuff?

Can people with pots hold down a normal job?

Of course you can hold down a normal job. You need to manage the condition, with lifestyle adjustments or with medication if necessary.

Yes, I work full time with next to no sickness. DD works full time, her sickness isn't great but I don't think it's POTS which causes her main symptoms, she has other stuff going on as well. I know a nurse with POTS who manages 13 hour shifts on a ward.

Dd has POTS and EDS and is a doctor based in a hospital. She's had a couple of fainting incidents in the past but thankfully nothing recently. It's about management. She finds salt tablets helpful for that.

No reason your dd can't have a normal life.

@DanielaDressen My dd dropped out of uni two years ago and now has been looking for work but she is too anxious. Recently she got offered a little parttime job but she s too anxious to even try to start the job.
How do you manage?

It sounds like your dd would benefit from counselling. What is she anxious about? To be so anxious as to drop out of uni and to be afraid to start a job seems to be an extreme reaction to get diagnosis. Getting a diagnosis of a life long illness is tough and it sounds like she needs help coming to terms with it.

She should also speak to her doctors about meds that will help.

We have been trying to get a diagnosis of POTS for years. She has pretty much given up. She just gets in with life! Even if diagnosed there's not much treatment so....

She avoids standing for too long, hot crowded places. She carrys electrolyte drinks, and adds salt to all her food. She tells everyone she lives with in case they find her on the floor.

She has completed undergrad, now doing a Master's and is a competition lifter.

POTS is very variable. Some people have minimal symptoms while others are housebound. Is she getting treatment and has she made lifestyle changes? I was very seriously ill with POTS and almost housebound two years ago, I'm now in recovery but it'll likely be years, if ever, before I have anything like normal function back.

There's lots of treatment! I'm on four types of medication, have had intensive physiotherapy that I now still do along with a specialised exercise program (Levine Protocol), wear waist high compression stockings, increased sodium (on top of the slow sodium tablets I take daily), increased fluids, IV fluids, raised head of the bed by a few inches... and lots more lifestyle changes. Oh and sessions with an exercise physiologist and a clinical psychologist which were both immensely helpful even though I already had a good understanding of how pacing and lifestyle impacts POTS.

There's more medication available too but it can be very individual which ones and in what combination work best.

I would advise anyone with suspected POTS to pursue a diagnosis as if left untreated it can progress and the worse it is when treatment starts, the longer it will take to recover function.

@KnittedCardi - the above isn't really aimed at you. It's great that your daughter is managing her symptoms well by herself and it sounds like she copes brilliantly. I just wouldn't want anyone with suspected POTS to put off getting help because they think not much can be done. A few years ago, I was that person and it resulted in me becoming very ill before I finally sought a diagnosis. POTS isn't curable but it is very treatable and even very ill people can make a full recovery in time.

@OchonAgusOchonOh she caught Covid at the beginning of her 2nd year at uni. She moved back home since and mostly house band. I supported her by regularly driving her back to uni to attend lectures and some online and also her work placement. She managed to complete her 2nd year of uni but decided it s too much to return for the third year.
She s constantly worried about fainting in public. She has just finished a course of CBT therapy which has helped a little as at least now she s prepared to leave the house to walk for 10 minutes but she finds it a hard work.
Sorry, just realised I got the years wrong. She only dropped out of university a year ago though she s been back home for two years. I was a little confused.

Sorry I meant housebound not house band.

That is tough. Is she taking salt tablets? That really helps dd with the fainting. Compression socks are also good. Dd also does some form of squeezing exercise with her legs when she feels faint and it frequently prevents a faint. A good physio who understands POTS would be worth a visit.

She hasn’t tried salt tablets yet do you just buy that from pharmacy or should it be on prescription? She doesn’t find compression socks help.
May ask dd to refer herself to physiotherapy.

I've got POTS and inappropriate sinus tachycardia as a result of long covid. The fatigue is the biggest issue for me. I had a long period off work but have been back for a while now on a really well supported phased return. I'm part time at the moment but they've kept my hours open in the hope that I will get back to full time.

I've had a few light headed/near faint moments at work but colleagues/manager are supportive and understanding. Have a foot stool in the office. Bit embarrassing when it happens with patients (am an AHP) but they've been great too.

I find compression tights more helpful than socks. And/or compression vest (think it's compression round my abdomen that's most helpful).
Drink half a litre of electrolytes before getting out of bed in the morning.
I still have one cup of caffeinated coffee first thing but rest of the day no caffeine.
Salt on all meals.
Loads of water, I drink minimum 3 litres a day.
Cardiologist recommended ivabradine however GP has refused to b prescribe this as apparently POTS is an off label use. So waiting for fade to face cardiology appointment so they can prescribe however in the meantime I'm on propranolol which is helpful. I do still get symptoms but less often and can stand long enough to make dinner and wash up etc - before I started the meds I was sure I'd be spending the rest of my life flat on my back!

I don't have anxiety about it at all though. It's just one of those things.

DD did have cardiology assessments privately, but what she hasn't had us blood tests or blood pressure, which annoys me as that's the basic stuff. Uni has made it difficult to schedule GPs.

She obviously isn't as bad as pp's, as she keeps going, like the little train, puff puff puff, but occasionally she does break and needs a reset.

I think the gym training really helps tbh. Interestingly she has never fainted at the gym.

For me it's about pacing but also conversely pushing myself with exercise. I have EDS as well so with the fatigue I'm not sure what's POTS and what's EDS, I suspect most of my symptoms are EDS. I get dizzy when I stand up quick or for too long. Fluid intakes helps with the dizziness.

As far as I know, she buys them over the counter.

Be selective about the physio. Many know nothing about it so won't be any help.

The squeezing exercise really works for dd. It's about getting the blood flowing. She used that at her graduation as when she stood up she felt herself going but did the exercise and managed to stay upright. That would have been a bit embarrassing😀. Before she figured out the exercise, she had fainted at work once or twice but other than the first time when they insisted she go to A&E, it's never been a problem. Patients are always very sympathetic and she always gets a bit of a warning so can just stop what she's doing and then faint gracefully.

Hi two of my children have had a PoTs diagnosis, one was prescribed salt tablets, one was about 13 and the other aged 16, both have since recovered, they have been discharged from the paediatrician. The younger one had considerable anxiety after diagnosis about "fainting" in public/ on the school bus which has been difficult but now at nearly 18 he's a lot better. Both of them have diagnosed autoimmune conditions (not the same), coeliac disease and connective tissue disorder type things. I found Facebook groups were very negative and didn't reflect our experience at all.

I have read that some young teenagers can grow out of pots after a number of years. But my daughter first got it while she was 19 so not sure if she will ever recover. I m more concerned about her psychological state than her physical state atm.

I have POTS and I found CBT very helpful when I was anxious to leave the house in case I fell. I'd work on challenging your daughter to try thing like going to the shop to buy milk/bread, getting a bus, and buying a drink in a cafe. I used to practice asking for a seat on the bus every day with my housemate, then I'd get the bus to work, then talked to her about how it had gone when I got home.
My POTS is just the same but anxiety/stress reacts so badly with POTS symptoms that managing the anxiety means I can do so much more. When I was first ill I couldn't work but now I have a part-time job, and a partner and children.
Ask your daughter what she would like to be able to do for herself and set some goals that she can work towards.

FD and her bestie both have it and have been doing hca bank shifts as well as at uni studying nursing. It’s def not an excuse not to work.

My DD24 has POTS - 8 years following a bowel infection- the fatigue causes her problems now & she's got CFS too . She used to get very anxious about her heart rate going up but started on an SSRI last year which really helped her manage her anxiety around symptoms . She was bed bound a couple of times over the year and particularly had a crash with Covid , but now she's at uni and managing reasonably well . I think she'll manage to work in her chosen career but I think she'll have to figure out exactly how to manage and may end up working PT , but I think that's more to do with the CFS than the POTS .
Things that have helped her are stockings, going to the gym - particularly weights - she's not going to be doing 5k on the treadmill! . Salt tablets , 3 litres water daily and sometimes compression stockings . Also she can't have lots of refined carbs as this seems to make everything worse . She actually was advised to have a low fodmap diet by her consultant.
She finds that comments about growing out of it aren't that helpful - she's just learned to manage the highs and lows . POTS UK are a brilliant source of info . Good luck to your daughter - it's an isolated life for young ones who need to get out and see their friends .