Low phosphate again

[PoTs_lass]

Hi everyone, I'll try and keep this as short as I can!So I keep having episodes of upper back & chest pain. Then get random feelings like my heart stops, then it beats super fast then slows again. This happens multiple times in a row which I then go to a&e to get checked out. Every time it comes back I have low phosphate. This time no drip was sent home with oral replacements. It's an absolute long shot but has this happened to anyone? I'm feeling so scared and unsure of my body right now and fair to say my mental health is not in a good place.

Thanks for reading, and really hope I can connect to someone this has happened to

[Hugomum]

Hi. So sorry you are suffering from upper back/ chest pain. It is so difficult when you are in pain and feeling low , you have shown strength and done the right thing by reaching out for help. I have had to do similar lately and found it so beneficial being in this site and the amazing support you receive from other members. Have they recommended physio? I have irregular heart beat and been diagnosed with AF and msk chronic pain since my ohs last May. I have been prescribed Zapain and Morphine. Maybe worth self referral to physio or private appt for cardiologist if you are having no luck with GP. Hope you feel better soon and take care of yourself.

[PoTs_lass in reply to Hugomum]

Hi HugomumThank you so much for your kind reply! I've not had any physio specifically relating to this problem but not sure they would be much help. Every time I try to access the service they bounce me on somewhere else! I'm sorry to hear you suffer with pain too it's absolutely miserable! I've been lucky enough to get some oramorph prescribed recently but don't want to take it until things are absolutely to a point I can't handle the pains any more

[Hugomum in reply to PoTs_lass]

Bless you! Don't be a martyr to the pain! Have an oramorph if pain is bad and just before bedtime if it gets you a good sleep it will really benefit your wellbeing. Take care - keep us updated on

X

[PoTs_lass in reply to Hugomum]

Thank you! May give in eventually but for now I'm being a stubborn mule haha. Hopefully I'll have something positive to post soon x

[Blearyeyed]

Are you also on increased sodium and water each day for your POTS? Sometimes you need to alter when you have sodium and other electrolytes to make sure that water and sodium intake doesn't cause things like phosphate and magnesium to drop.

Increasing foods with phosphate and magnesium nutrients in them can help to reduce the effect of having to have increased sodium and water each day for POTs can have on your electrolyte balance. Having your additional salt in a meal or snack a few hours before or after your meals with the other nutrients can help to keep the balance right.

It can be a bit of trial and error when you first start.

If you are going to take the oral supplement and start to make the diet changes that help make sure you get a phosphate level test 1-2 months at the GP surgery to check your balance is back to normal as you don't want to send the balance in the other direction.

You may find that after the levels are back to normal you can stop the oral supplement and manage to maintain the balance with food , hydration and exercise alone.

[PoTs_lass in reply to Blearyeyed]

Hi BlearyeyedThank you for you reply and your sound knowledge of pots! I'm on increased water in take but never been on increased salt in take - it's has never been mentioned to me in the past. However the pots specialist washed their hands of me nearly 5 years ago now. It's making so much sense that there could be misalignment in more than one place for electrolytes this is something I'm really going to try and get help looking into.

The gp already had me on monitoring blood test and frustratingly the last test did come back slightly low but they didn't seem bothered by it. At the time made sure I was drinking increased milk and eating lots of yogurt not to end up back at the hospital. This didn't help as no less than month later I'm in the situation of being on replacement again!

[Blearyeyed in reply to PoTs_lass]

I have Chronic Dysautonomia, caused by a combo of Sinus Node Reentrant Tachycardia Syndrome and P.O.T.s with intermittent Atrial Fibrillation and mixed Arrhythmias. It took a heck of a long time to get diagnosed even though the conditions have affected me since childhood and been misdiagnosed often.My condition is linked to Ehlers Danlos Syndrome.

I found most Cardiologists , no matter how Senior or experienced they might be have little knowledge about diagnosing and treating P.O.T.s or Dysautonomia correctly.

They assume it isn't serious and will all be corrected by a beta blocker ( which is often inappropriate) and basic self care like drinking more water , compression and exercise. For many it isn't that simple and can require specific combinations of medication, careful activity pacing , water and salt, and still it can be quite disabling and affect your quality of life.

I had to do all of my own research , rake good diary notes, do my own poor man's tilt table tests at home whilst having Holter testing and carefully and politely suggest to them what might be helpful.

Most didn't even realise they should be testing your heart rate instead of blood pressure in poor man's orthostatic tests.

There are no specific forums for P.O.Ts or Dysautonomia on HU or in most online and health info spaces and very little awareness of it as a set of Cardiac / Neurological conditions which can cause people to require a wheelchair at their most severe.

This is what you will come across so it's worth looking up the info on POTs UK and Dysautonomia International and finding an online support group if you can, it's the only way you end up getting successfully treated.

You might benefit from investing in a private consultation with a listed cardiologist with Pots as a specialism, but even that can be hit and miss.

My physiotherapist knew more about Dysautonomia than my Specialists do because he kept finding autonomic dysfunction was a key factor in making it harder for many of his cardiac and Fatigue patients managing to move or tolerate exercise, which is why we are now working on trying to create better exercise and activity programmes with these cardio and autonomic Orthostatic Tachycardia problems.

Good Luck and take it slow , Bee

[PoTs_lass in reply to Blearyeyed]

Thank you so much Bee, I'm sorry for the journey you have been on but also so grateful for you sharing your knowledge with me. I'm trying to push all parts of the NHS but it's soon becoming a waste because as you say there isn't much interest in dysautonomia & pots etc. Soon as you're a complicated patients it's too much paper work! For now I'm going to rest up and hopefully read up when thing have settled down a bit. And maybe start to think about going private because honestly this isn't living it's just fighting to survive at the moment

Jules x