Postural orthostatic tachycardia syndrome (PoTS) in 68 year old woman?

[Judithdalston]

I have had L*** C**** for over 18 months including loss of smell and breathlessness, plus raised BP and now what appears to be PoTS on standing up, with HR over 125 (DIY diagnosis at HR rises 30 points on standing). I have had clear lung X-rays, an echocardiogram which was good, and phone appointment with a consultant cardiologist. He just thought swopping a BP drug ( I am on 5 different ones: amlodipine, bisoprol, doxazosin, losartan plus)) would do the trick: indapamide for Bendroflumethiazide, but if anything I feel worse after 3 weeks with lots of vertigo, so I’ve swopped back. I gave my GPs a letter last Tuesday with my BP/HR results and symptoms, but not been responded to. I don’t fit into the usual PoTS pattern being much older.; I realise PoTS is a syndrome, further confused by the fact I have 40 years intermittent vertigo /syncope from a trapped nerve in my neck, but the dizziness has never lasted this long. I’d like advice, including how to progress to consultant level. Locally I think I would be dealing with NHS cardiologists, and there are no recommended specialists (on PoTS Uk website) near me , nearest would be 1.5-2 hours away in Newcastle area, any suggestions … please pm me. Thanks

[JeremiahObadiah]

I can’t help at all on your issues, but wanted to say how very sorry I am that you are experiencing these problems. I do hope someone here can give you some thoughts and pointers.

The protracted version of the virus seems to be poorly understood and therefore somewhat ignored .

best wishes

[fishonabike]

i am sorry to hear that you have this - as someone who has lived with ME/CFS for over 40 years (undiagnosed for the first 20) i can identify with people who have LC.... and can't get medical support or treatment

you might have to try several specialists before finding someone who can help as this probably affects more than 1 system. For example the coordination between vascular and neurological systems may be involved, along with some endocrine involvement.

You might find some understanding and support with the ME community, some members also have POTS.

Meanwhile you might with to adjust the heading of your post to Postural Orthostatic Tachycardia as it currently reads Orthodontic (related to adjusting the position of teeth)😉😁

I wish i could offer more help but have no knowledge of relevant specialists.

[Judithdalston in reply to fishonabike]

hadn’t noticed wretched iPad correcting my complaint to my teeth…about the only place where I am ok, and have an excellent practitioner ( dentist) to look after them! Rest of body far more complicated sadly especially where I live.

[Stabbo]

indapamide gave me vertigo but it lasted just over 3 weeks and then stopped. If you need consultant level response you need a named cardiologist and ask your GP to refer with queries or concerns you've raised

[Judithdalston]

just discovered the hand delivered letter to GPs with BP and HR stats plus symptoms has gone missing a week later and not recorded to medical notes… feel like I’d like to bypass Gp surgery altogether and send the letter direct to known cardiologist! Grrr.

[kushami36]

Regarding POTS coming on at a later age – it is uncommon, but if you have a look at this survey of 5000 POTS patients from a couple of years ago you will see a smattering of people being diagnosed all the way up to 72 years old.

ncbi.nlm.nih.gov/pmc/articl...

I find the PDF version easiest to read (click at top left to download PDF).

Also, with COVID, the typical POTS age range may not apply.

And, I hope you don’t mind me saying this, but taking so many BP medications seems like it might warrant a review. I recently read an article about how doctors may keep adding medications, but not step back to ponder why mulriple medications still aren’t getting it under control, potentially missing some (rare) conditions that can cause resistant hypertension.

Hope you managed to get some help in the meantime.

[Yumz199725]

So sorry to hear about your situation hope its been sorted ❤️. I'm going to doctors on Tuesday to enquire about the same issue I'm not sure what response I'm gona get or if they will even take me seriously 💔😢. I have noticed I've always got a headache when I stand up and my heart rate increases alot get light headed and dizzy not always but most times so I think it's worth going to doctors.I hope you was able to find a specific doctor for POTS who can help you.

Take care ❤️

[Judithdalston in reply to Yumz199725]

hi Yuma, I had to reread what I posted originally ( frighteningly 2 months ago)…. finally got to talk to GP on phone who doubled my bisoprolol dose to help the raised BP, breathlessness and ‘PoTS’ symptoms. But soon got even more breathless, which never improved, so got both an inhaler ( to widen airways) and offered choice to cut bisoprolol back down. The inhaler didn’t work, and only recently cut bisoprolol back to 1.25 dose. As I tidied up for Xmas the BP monitor etc was put away, so I have not bothered monitoring the last few weeks, so no idea what happening re BP etc as the dreadful breathlessness was my priority. Will get back to health monitoring when life settles down post Jan 8th; suspect the ‘PoTS’ will still be there. Of note L.C. researchers in South Africa are suggesting that the raised BP on standing may look like PoTS but it isn’t the same mechanism if you have L.C., my GP admitted she wasn’t at all interested in L.C., so DIY medication needed. Not sure if your PoTS may be L.C. related, but hope you get listened to, and you better treatment. At least it sounds like a face to face GP apppointment, which are virtually impossible to get at my surgery; I see you have life long heart problems so hopefully take your worries more seriously! Good luck.

[Yumz199725 in reply to Judithdalston]

Thanks for your lovely reply. Yeah sorry I didn't reply sooner only just saw this on here. Have you been diagnosed with asthma?? I have asthma gets worse in the winter I'm not sure if my breathlessness is due to heart or lungs. That's interesting about what the southafrican researchers found though so POTS can be the same as LC wow. I'm not even sure if I would get a face to face appointment if I rang up to arrange one so I'm going between 8-10 in the morning and you can ask to see a doctor. I just hope they actually listen to me you think they would take me seriously given my history it's frustrating isn't it. I already contacted my consultant countless times ( I think there getting a bit fed up of me) why give you a help line if they don't want you to use it 😳😅.

Sorry to hear your still having trouble maybe it's the bisoporol cant they change the drug that your on??

Hope they can sort you out properly it's a major worry isn't it please take care and have a nice evening ❤️

[Judithdalston in reply to Yumz199725]

Some replies are two years later, so don’t worry! No not diagnosed with asthma, just doing any domestic task like brushing teeth or making gravy made me so breathless, and had to sit down leaning over to recover. PoTs like BP is only one of 300 or so recorded symptoms of L.C., I assume resulting from the micro clots in blood that these South African researchers have confirmed, and unlikely therefore to be same reason as true PoTS( tho as it’s a syndrome anyway I think they are splitting hairs). Have you got L.C? Changing bisoprolol may be down the line, in next few months, but I do have other chronic conditions that for eg other beta blockers are not suited. My drs.seem to think being on 5 BPdrugs that don’t obviously work is ok!

[Yumz199725]

Ah good don't feel so bad now 😅. Sounds like you get very breathless just doing simple tasks 😳💔. More recently I'm finding I get breathless from standing up or standing up to long for example when I'm making my dinner I have to sit down and have a drink of water or what ever is in the fridge, and when I'm making my bed or changing it or doing anything that involves movement to be honest that's why I think it's worth mentioning does this sound like asthma though only I feel dizzy and nauseated most of the time always have a headache or migraine mostly migraines actually erm I know headaches is a side effect from the heart tablet I'm on I take verapamil 40mg x2 started it June of 2022 but would it take this long to start affecting me like this. Sorry to sound silly but what is LC I'm not sure what I thought it was. Sounds like they should definitely change your BP meds they can't leave that 😮.

[Judithdalston in reply to Yumz199725]

Long Covid ( it’s name was blacklisted from some sites thus the abbreviation)! Yes I too found that long( c 15-25 mns) standing also set me off, that’s how I discovered the PoTS with DIY monitoring. I was on Bendroflumethiazide during the summer for about 3 weeks ( a cardiologist thought a swop from indapamide might do me good) and got awful vertigo that never improved, I find lots of drugs have side affects but it can take sometime to unpick that it’s a drug that is at fault when you have other chronic conditions too, I don’t have any experience of verapamil, but it might be worth asking about your symptoms, and whether a switch might be possible.