POTS help

[AmyMarchfan]

Hi, I have been diagnosed with Pots for 14 years. I am currently in my mid 20s and I am receiving treatments for pots however I am still have difficulty taking public transportation And doing strenuous activities (long walk, night out, physical labor, more than one day in the office) and sometimes basic tasks. I am increasing my salt intake and I’m taking iron vitamins. It hasnt made too much of a difference over the last 14 years. I’m hoping to find other people on here that understand what I’m going through and can possibly help me with treatment ideas or just talk about pots. I am tired of having POTS and want know know if anyone has any management ideas ❤️

[Blearyeyed]

Have you got iron deficiency? When were you last tested?

[AmyMarchfan in reply to Blearyeyed]

I’ve always been iron deficient I’ve been taking supplements for about a month and o don’t notice too much of a difference

[Blearyeyed in reply to AmyMarchfan]

If you explain how long you have been on oral iron to your GP you can get your iron retested.If you are still Deficienct after all of this time it would probably be wise to request a full blood count, Vitamin B 12 , Folate and Vitamin D test.

A Deficiency in Vitamin B 12 or Folates can cause Anaemia because insufficient amounts of these cause iron and Vitamin D malabsorption.

They can also make your POTs symptoms worse because they have an effect on cardio function so tachycardia, dizziness, palpitations and blood pressure can be effected.

B12 or Folate Deficiencies also cause insulin resistance, thyroid issues, chronic fatigue , joint and muscle pain , exercise intolerance and numbness in the muscles on activity.

They can also cause an increase in autonomic nervous system dysfunction so it makes Pots worse but also causes brain fog, insomnia , bad temperature regulation , night time sweats , migraines and in some cases digestive symptoms.

If you are B12 or Folate Deficient but have a normal FBC they will try you on oral supplements at first for a few months and then recheck your results. You would continue to take iron supplements at the same time. At that point it's also a good idea to have tests for Pernicious Anaemia/ Intrinsic Factor done.

If your blood cell results are outside normal range they would offer you B12 injections to speed up the treatment , or you get injections if oral supplements do not improve your levels or you have PA.

If you don't have B12 or Folate Deficiencies it is worth asking for your GP to refer you to Haematology to discover why you suffer from long term low iron levels , and to request to be sent for iron infusions because you may have some other functional reason for low ferritin/ iron.

It is good to find out if you have any other underlying health problems that may be the cause of your POTs, such as an iron , circulation or blood issue, a Hypermobility condition ( I have EDS ) , a hormone , nutrient deficiency or thyroid cause, or if autonomic dysfunction can be the root cause of your Pots.

I also have a genetic cardiac issue which means I have Chronic Dysautonomia, my POTs is caused by that and my EDS.

POTs can also happen for acute periods for some , or symptoms get worse at times like puberty , or in females it can flare during the Menstrual Cycle, Overactivity or what we call Stress of mind or body can also make symptoms worse.

Sugar , Alcohol , Dehydration, Artificial Sweeteners can increase some people's symptoms. Caffeine is bad for some , not for others.

I assume that you have been on the POTs UK website, This gives you all the Self Care advice about drinking water especially before moving from one position to another, salt intake , pacing yourself and using slower movement, compression clothing and possible treatments if Self Care doesn't help.

Working out your triggers and avoiding them, choosing the right exercise therapy and having a really careful balance between rest and activity each day are key to managing POTs and getting a better quality of life.

The same treatments don't work for everyone , many find they are put on beta blockers but they aren't that successful, especially if you are younger or don't have blood pressure problems so it's better to get to see a Specialist and request the opportunity to try other treatments that the GP can't prescribe without consent.

POTs UK also have a list of Cardiologists whom have more experience in treating POTs across the UK and you could try to get a referral onto their NHS list.

If you can find an online support group , or local face to face group if you live near one, for young people with POTs because it's good to have people to talk to whom understand how debilitating this condition is.

There are a few of us on this forum now so you will find people whom understand and will reply if you have questions or need a chat .

There isn't a POTs forum on HU , unfortunately, and people do seem to forget that it is a cardiac condition , and for some its a condition that restricts your activity or ability to exercise more than a lot of well known heart problems.

Take care , Bee

[devonian186 in reply to Blearyeyed]

What an excellent and comprehensive reply.

[Blearyeyed in reply to devonian186]

Thank you , glad to help and build awareness when I can , take care , Bee

[Squealer in reply to Blearyeyed]

We are just dealing with this issue ourselves with our daughter, so thank you so much for such a helpful response.

[Blearyeyed in reply to Squealer]

I wrote a reply a few days ago for a grandfather asking about their granddaughter which may relate more to a young person . If you go through the list of next posts below , or go on my profile and look in the replies you should find it.If you or your daughter ever have any questions feel free to message me and I will help if I can , take care , Bee

[Judithdalston]

I have come very late to PoTS, and postural hypotension, as a symptom of Long Covid, and was interested to read Blearyeyed’s post above as I already had many of the ailments she mentions long before getting the dysautonomia with for eg diabetes and hypothyroidism. Although I can hardly stay upright or walk for more than a few minutes without breathlessness, or at worst fainting and vomiting, I have been able to go swimming. I started thinking I might just manage say 10 mins including hopping/ jumping in the pool, but was pleasantly surprised that the pressure of the water plus inclined position of swimming means I had no problem at all exercising. I now do 45 mins 5 days a week…it’s not improved my PoTS but does support general mental and physical health. Swimming might have better results for your much younger body Amy…

[kushami36]

What treatments have you tried so far?

PoTS UK has good information on the main options. I’d also recommend any recent lecture from Dr Nick Gall or Dr Satish Raj (have a search on YouTube).