Anyone else have POTs symptoms caused by your deficiency or along with your deficiency?
Is it possible for it to heal?
It's my hardest symptom and mine is considered mild.
Laying heart rate is in the low 70s, standing heart rate is anywhere from 90-108 without coming back down unless I sit.
I keep trying to control my beat through breathing.
Does anyone know if compression socks keep the beat lower? Like do they actually work?
My daughtwr has POTS from undiagnosed b12 deficiency. high salt diet helps
Pydio exercises with calves before getting up.
No bending.
Has a stall in the kitchen.
A stall in the bath
She trued for 2 yesrs to control symtoms without medication.
She now has midodrine as she was passing out alot and having whats called pots 'episodes' more like fits to witness and ending up in a and alot.
Lying down with kegs raised as much as possible.
Drinking large amounts of water before moving.
Medical grade compression tights help but have to be put on before yoj get uo in the morning and need to be toe to waist.
They are very difficult to get on of you are weak.
Aides are available.
Pots UK advises on these.
Depending on your age and how mild it us yes it is possible to heal .
Sometimes needs good management and doesn't heal completely.
She was given mixed messages.
Teenagers recover completely
By the age if 50 healed
One yesr healed
Loads if scenarios.
Get the right pysio.
My daughter swims fir her exercises.
With the best will in the world trying to build up walking didn't work.
Specialist advised to stop abd swim instead.
Your HR not too bad at present. Relatively speaking for pots.
Have you had a standing or tilt table test. ?
Just dont try and stand too long.
Sit or lie at first sign.
Hope it improves in time.
I think I mentioned to you before about
'Deliciously Ella's story
Worth a read .
She got better.
You mention high salt diet !
When I first had b12 deficiency, I was in such pain I couldn't turnover in bed or do anything. I was prescribe
Co-codamol, but as I was having trouble swallowing was given soluble ones. Which contain salt.
Now having shoulder pain from injection, I try and keep painkillers for night use. Once again having soluble paracetamol at night and finding that the pain is less intent and sleeping has improved, I believe it is the salt that has helped... I've even started to put salt into my bath
(Sometimes epsom salts sometimes cooking salt)
Also on gp's behind closed doors last night there was a case, and the doctor on there said the body needs salt and sugar to repair it self.
Obviously everybody has to way up the pros and cons of extra salt. In my case it is certainly helping.
Yes in the case of POTS it raises blood pressure
Im 35 and it's not as bad as somee cases. I think my case is jn the middle
Mu daughter was in her mid 20s when she got thst diagnosis. Definitely try the medical grade compression tights.
Hooe you find a way if coping s d improving your symtoms
One of my worries is a shortened life span. I was reading that people with ME/CFS have similar issues with their autonomic system due to which their life span is said to be 25 years less than others.
So that means dying in my 50s or 60s.
Never heard of that .Certainly never been mentioned on so many consults with my daughter.
Ask the cardiologist as I don't think that is correct .
You're still healing. Don't let your mind go down that road. The symptoms you are describing are not on par with the kind of life-shortening dysautonomia you are referring to, imo. And, btw, there are many current studies to find treatments for dysautonomia in the wake of COVID, so there is hope for that group, too.
I had bradycardia, hypotension, and dizziness upon standing before B12 treatment. My BP and heart rate have slowly crept back up towards normal (although still lower than they used to be) and my tachycardia and dizziness on standing have all but gone away. I've been on injections for almost 2 years. I do seem to need more salt than most people, as others have mentioned. I spent a lot of time worried about the things you're worried about, but as you know, the anxiety does *not* help dysautonomic symptoms. As much as you can, try to focus on taking impeccable care of yourself and trust your body to heal (getting whatever medical assistance you need, too, of course -- I am not a doctor.) ❤️ I still struggle with worries, too, but the more stressed I am, the worse my symptoms are, so self-care has to be a priority.
Are you able to fly in airplanes this way? It's one of my concerns as I live across the country from my home.
I don't fly but I would if it weren't for COVID and I had somewhere to go. I no longer have symptoms upon standing and don't expect that I will if I keep up my B12 injections, stay hydrated and keep my electrolytes balanced.
It's probably also worth noting that anxiety is a symptom of B12 deficiency and one that was really intense for me. It is made worse by our bodies "malfunctioning" -- so many things to worry about, including, "Will it always be like this?" But none of my worries really came to pass (other than being "stuck" on almost daily injections) and the anxiety has gotten much better, too.
Thanks so much for talking with me. It really helps hearing from someone with the same issues as I have.
I live across the country from my place of birth and was feeling incredibly depressed that I might not be able to fly home ever again. Your story gives me hope.
I have noticed in improvement in my heart issues as of 7 months. I'm hoping there will be even more in the next year and a half to come 🙂
I have undiagnosed (yet medically recognised) POTS, I also have PA however, I'm sure that my POTS symptoms come from undiagnosed hEDS (though I have an outdated diagnosis of BJHS - Benign Joint Hypermobility Syndrome). A lot of what has been said already are the measures that I use along with additional injections, vitamins and rest. I do increase salt and drink a homemade salty honey lemon drink to feel more 'real'. I need to buy myself a BP monitor and oxygen monitor to really get the information to go towards a true diagnosis but at age 51 and with having other chronic conditions I feel that I'm left on the shelf. I'm due a physio telephone app tomorrow so may ask for some medical compression tights as my aeroplane ones do help quite a bit. Having a bad time of it at the minute hopefully it won't last for much longer and I'd say that along with the dreadful fatigue the POTS are my worst conditions.
Pernicious anemia and tachycardia 
What if it's not pernicious anemia? 
Visit to hematologist for pernicious anemia
Pernicious Anemia treatment
