Pots

[Holly2021]

Hi I’m just wondering if anyone on here has a blood pressure issue and low sodium in blood due to HU my bp drops really low when standing up for more than 10 mins or so ! And feels faint my Gp calls this Pots any advice would be grateful if there’s a connection to Jak 2 pos and ET

[hunter5582]

Well that is a new one on me. It turns out hydroxyurea can cause hyponatremia (low sodium).medscape.com/answers/767624...

It sounds like you are describing postural orthostatic hypotension. There is something that sounds similar, but is a different POTS - postural orthostatic tachycardia syndrome. I would be sure to be clear which your doc is thinking you are experiencing.

Hyponatremia can cause significant issues if it persists. This is something to be sure to address with your hematology care team.

Hope you get it all sorted out ASAP.

[Holly2021 in reply to hunter5582]

Yes I have. Both symptoms

[Holly2021 in reply to Holly2021]

Heamatology denied caused by HU so I went private and had lots blood tests and in the side affect on HU say can cause low soduim

[hunter5582 in reply to Holly2021]

Glad to hear you followed up with someone more familiar with HU side effects. I believe hyponatremia is pretty rare, but a hematology practice that treats MPNs should know this. Perhaps a consult with a MPN Specialist is in order. Here is a list mpnforum.com/list-hem./ .

[Lettie_WP]

All three of my daughters suffer with POTS to varying degrees (they have EDS which is often linked with POTS). There are drugs you can take, but many manage it with increased water intake, increased salt (obvs be careful here - speak to your consultant) and support stockings. But I would follow hunter5582's advice and be sure you know what you dealing with. Good luck. x

[Holly2021 in reply to Lettie_WP]

Thank you yea had the stocking but kept falling down ! Now trying to get tights but weather been to hot

[Meatloaf9]

I think you are talking about postural tachycardia syndrome. I have not heard of it being related to ET or HU. I have had both ET and now take HU but now PV. I have not been warned of PoTS. I do think you need to drink a lot of water with it and increase your salt intake, but don't take my opinion on it, talk to your hematologist and/or your GP. My wife also has episodes as you describe, after months of tests she was finally diagnosed with PSVT and she takes a beta blocker. Again, this is not advice on therapy or any diagnosis, talk to your doctors to get a diagnosis and see if you need treatment. Best to you always.

[Holly2021 in reply to Meatloaf9]

Yes thank you I had few meds but raised my HR And Bp too high and I’m just taking 1.25 bisoprosol a day any higher will lower my bp more

[Holly2021]

My Gp been brill seeing me every 2 weeks he Tells me I have pots and O h

[Cja1956]

Thank you for bringing this up. I’ve been experiencing these symptoms ever since my diagnosis of ET in 2008. I often wake up, eat breakfast, and then have to get back in bed because my heart is beating fast and I feel like I might faint. I often attributed my symptoms to my medication combined with ET. I never knew it had a name. Have you been tested for sleep apnea? My hematologist referred me to a pulmonologist and in February I was diagnosed with obstructive sleep apnea. I literally stopped breathing an average of 19 times per hour. I use a CPAP machine which seems to help.

You’ve gotten some other good suggestions on here. I wish you the best.

[Gastroboring]

Holly2021 I have ET triple negative on aspirin only. I have POTS. I’ve had both ET since I was in my twenties or possibly younger and PoTS since I was 11 years old. Wearing compression helps. Electrolytes with water helps but I don’t know anything about hyponatremia do take a POTS specialist’s advice There are many drugs you can try for PoTS that will help again need to explore with. POTS doctor. I take dexamfetamine which helps with brain fog and fatigue for POTS for 4 hours with each dose. I can’t take it after 4 pm or it interferes with sleep and it’s necessary to be very careful not to do too much with the extra energy as you can suffer post exertional malaise. I suggest you check out the POTS UK. Website and Dysautonomia International website. There are lots and lots of lifestyle things you can do to help your POTS and most of them don’t cost anything. No 1 pace yourself energy wise. Rest often during the day whenever you can. No 2 get a shower chair. No 3 be very careg to stay cool in the heat. I wonder whether my high platelets make by blood sluggish affecting my circulation I’m also hypermobile. Many people with PoTS are. Some people develop POTS after a virus. All the best. Dont hesitate to contact me if you like any help. I’m in Australia.