A few POTS questions.

[Jackdaw]

I’m in hospital and one of the things my doctor is looking into is POTS.

I have been ill with ME for 14 years and think the POTS signs have been nearly that long.

Five years ago a GP freaked out at how my heart rate and blood pressure raised upon standing. However it was brushed off by the more senior GPs as deconditioning even though I wasn’t deconditioned. I don’t think they even knew about POTS.

The doctor I am under here does take it seriously and there is even a POTS clinic. They have done a 24 hour urine sodium test and my sodium output was low. I have been bedbound since February and am too ill to undergo tilt table test. They plan to tilt the hospital bed and see what happens.

Do you think this will work?

Will taking diazepam affect the results?

What medications do you think are best if my results are the same as five years ago?

My doctor is concerned about medications that lower potassium as my potassium levels are already low.

Thanks.

Jackdaw

 

[Malea]

Will taking diazepam affect the results?

I would think so.

I experience slightly better POTS-symptoms with Ativan, so I would think that diazepam could possibly do the same. (I‘ve read somewhere that mast cells and the beta2-adrenergic receptors have a reciprocal activating role. Don’t remember the source unfortunately. So if you take a benzodiazepine, which calms the mast cells, it could indirectly calm the adrenergic reaction a little, too)

Just an idea: You could also ask them to additionally test noradrenaline in the blood when they do the test with the bed-up with you. (1. while lying, 2. with bed up). Lots of people with hyperadrenergic POTS have elevated noradrenaline levels while being up.

 

[Gingergrrl]

The doctor I am under here does take it seriously and there is even a POTS clinic.

Can the doctor refer you to the POTS Clinic so you can have a real TTT? I know you are not well enough to do it now but in case it is ever an option for the future?

What medications do you think are best if my results are the same as five years ago?

It is hard to predict which POTS meds will work in any given individual but the most common ones (in the US) are beta blockers, Midodrine, Florinef, Mestinon, and a newer one here is Corlanor (Ivabradine).

My doctor is concerned about medications that lower potassium as my potassium levels are already low.

The only one that I have heard lowers Potassium is Florinef and patients are often prescribed Potassium (like K-Dur or Klor-Con) to make up for this and also have their Potassium levels checked every few weeks when they first start. I did not do well with Florinef but many do. I take Atenolol and Midodrine for POTS but we are all different.

 

[taniaaust1]

I have been bedbound since February and am too ill to undergo tilt table test. They plan to tilt the hospital bed and see what happens.

If are too ill to do a tilt table test (Ive heard they usually strap one down on that), I cant see how they could do a properly tilt table test using a hospital bed.

I have a better suggestion to try what I call the equivalent of like a poor mans POT test (where testing is often done in a doctors clinic just from a stable lay to a stand) but a version more suitable for us who are more severly disabled.

I myself find that my POTS can sometimes be easy to see by not even using a tilt table and not even standing up. It often flares up just went going from a stable lay (like they would get in a tile table test first).. to then just instead of standing, go from the stable laying to just simply sit straight up with your legs hanging over the bed.

IF they are worried the excertion of the sit getting your heart rate up, just have them help pull you up to a sit but make sure your legs are hanging over the bed so you have the upright posture to test for POTS with.

Then have your heart rate monitored just like would be done over a 10 min period for a tile table test.

That isnt an offical thing but certainly in my case often shows my POTS with the typical POTS heart rate increase and I think is a good way to sometimes confirm that a severely disabled person has POTS.

Hyperadrenergic POTS is the form you seem to possibly have. In my case also 24hr urine norepinephrine testing is extremely high due to me having this form of POTS (so high that several my tests done at different labs they thought they were lab errors!)

For Hyperadrenergic POTS , not just the typical POTS meds are used (in my case the common one florinef.. but that one can lower potassium) but you may also need a second medicine to help stop the high BP spikes caused through the excessive norepinephine when standing... Clonidine is often used for this as unlike many other BP lowering drugs, clonidine works by regulating norepinephrine, it suppresses its release.

 

[Jessie 107]

I’m in hospital and one of the things my doctor is looking into is POTS.

I have been ill with ME for 14 years and think the POTS signs have been nearly that long.

Five years ago a GP freaked out at how my heart rate and blood pressure raised upon standing. However it was brushed off by the more senior GPs as deconditioning even though I wasn’t deconditioned. I don’t think they even knew about POTS.

The doctor I am under here does take it seriously and there is even a POTS clinic. They have done a 24 hour urine sodium test and my sodium output was low. I have been bedbound since February and am too ill to undergo tilt table test. They plan to tilt the hospital bed and see what happens.

Do you think this will work?

Will taking diazepam affect the results?

What medications do you think are best if my results are the same as five years ago?

My doctor is concerned about medications that lower potassium as my potassium levels are already low.

Thanks.

Jackdaw

Hello Jackdaw
I hope that the doctors manage to sort your pots out .
Sitting on the side of the bed seems a good idea.

I am also severe and bedbound.
How are you coping with being in hospital with the noise and lights etc?
I hope you can get some rest.
Jessie

 

[Jackdaw]

Grateful for the replies. I can’t sit up for any length of time so the plan is to get me on the tilt table but not to do the full monty, just what I can tolerate.

I’m going to ask about the bloods as I was thinking it could be hyperadrenergic. I’ve done a 24 hour urine catecholamines collection and waiting on results. My resting bp is low.

Anyone done the 24 hour sodium urine collection? I know they look for below 150. I was 70’s.

Has treating POTS helped people?

@Jessie 107 It isn’t easy. My light and sound sensitivity aren’t very bad but I was in a bay for two days which was awful. Been in a side room since which is quiet but the tests and talking are hard. My mum is staying and looking after me. Would be loads tougher on your own.

 

[Jessie 107]

Grateful for the replies. I can’t sit up for any length of time so the plan is to get me on the tilt table but not to do the full monty, just what I can tolerate.

I’m going to ask about the bloods as I was thinking it could be hyperadrenergic. I’ve done a 24 hour urine catecholamines collection and waiting on results. My resting bp is low.

Anyone done the 24 hour sodium urine collection? I know they look for below 150. I was 70’s.

Has treating POTS helped people?

@Jessie 107 It isn’t easy. My light and sound sensitivity aren’t very bad but I was in a bay for two days which was awful. Been in a side room since which is quiet but the tests and talking are hard. My mum is staying and looking after me. Would be loads tougher on your own.

Hello Jackdaw
I also can't sit up for very long either.
I know I have poto but was unable to attend the appointment with the cardiologist as I became bedbound in May of this year

I am glad to hear that you are now in a side room and you have your mum with you.
This illness would be unbearable without good support.

I hope all goes well for you and you get the answers you need.
I will be thinking about you, please let us know how things go.
Take care
Jessie

 

[lafarfelue]

Has treating POTS helped people?

Yes. It has helped me a lot. And from what I can tell, it has helped other PwME a lot too... not everyone, but a significant proportion that many of us check with newbies to the forum whether they have been assessed for some form of Dysautonomia.

There are many options, medication wise, these days for treating POTS, so I really hope that one of them helps you. And even outside of medication, physical assistance such as compressions socks/leggings, increasing the head of your bed to around 6 inches, and adding a high level of electrolytes to your diet can help quite significantly alone!

Wishing you the best of luck, I am glad you're getting some help.

 

[taniaaust1]

Anyone done the 24 hour sodium urine collection? I know they look for below 150. I was 70’s.

Not me but I have had an our of the normal range sodium normal blood test one time where the sodium was low and the chloride was high.

Has treating POTS helped people?

This may sound terrible but treating my POTS (2 meds and support stockings) helps my POTS by about 15-20%. This is actually a great help seeing my ability to function is so extremely low one really appreciates being able to function for an extra 20 mins per day.

 

[Malea]

I’m going to ask about the bloods as I was thinking it could be hyperadrenergic. I’ve done a 24 hour urine catecholamines collection and waiting on results. My resting bp is low.

It was desribed in this thread how do the norepinephrine-test correctly:
https://forums.phoenixrising.me/ind...ess-norepinephrine-in-pots.54668/#post-912919

Edit:
I just read that you have to be 10mins up for it.. don‘t know if testing it makes sense if you can only be up for seconds/ a short time. (But maybe its worth trying to test it nevertheless..even with a much shorter time being up)

 

[Jackdaw]

I’ve been back from hospital for a little while now. I managed to do the tilt table test although it was only for a very brief time. I had a high resting heart rate for various reasons which was annoying as I was afraid the numbers wouldn’t go up high enough. I went from 141 to 182 just on a 50° tilt. My blood pressure stayed relatively the same. I was really knocked up afterwards.

But with that result and the sodium level they have diagnosed me with POTS. I am getting support stockings and have been given atenolol. I have been told to start on five mg but I haven’t started it yet as I felt unwell after coming out of hospital and I’m worried how I’ll be on it. I’m particularly worried about reducing circulation because I think poor circulation is a big problem for me.

Can I ask anyone taking atenolol how much they take, how much they started off taking and what time they take it? Any negative side effects?

The guy who did the test didn’t know there are different types of POTS so I Couldn’t do the blood collection unfortunately.

Thanks for all the help with this. It really helped me in hospital.

 

[Jackdaw]

Oh and electrolytes. The specialist said to take 6g of salt and had nothing to say about electrolytes. What do other people take and does anyone know any good brands (no sweeteners) I can get in the UK?

 

[Galixie]

The only one that I have heard lowers Potassium is Florinef and patients are often prescribed Potassium (like K-Dur or Klor-Con) to make up for this and also have their Potassium levels checked every few weeks when they first start. I did not do well with Florinef but many do. I take Atenolol and Midodrine for POTS but we are all different.

Hmm, I must be in the minority then. No one seems to want to put me on any prescribed potassium even though my level came back low on a recent test (result 3.2 range 3.5 to 5.3). I was told to eat more bananas or sprinkle No Salt on foods to get my potassium level up again. I'd already been trying to consume higher potassium foods before the latest results came back low.

Has treating POTS helped people?

Yes, taking fludrocortisone (florinef) to treat my OI has been really beneficial for me. I used to not be able to stoop down without feeling like I was about to pass out. I can move more normally now without that problem. I don't think I quite have POTS because I don't have the tachycardia issues, but my low blood pressure was a definite problem. It's become normal now.

 

[JadeD]

Hi @Jackdaw - glad to hear you’re home from hospital. I also have PoTS and from the UK. I got started on bisoprolol 1.25mg a day and 6g of salt. The bisoprolol has controlled the tachycardia but not the dizziness and unsteadiness on standing. I also get more of an orthostatic headache now and coat hanger pain.

I also had low urine sodium so I’m probably hypovolaemic. I think I need an additional medication in combination with bisoprolol but have to wait until my January follow up appointment to discuss.

I take nuun electrolyte tablets. They have stevia in so are quite good.

If you want just pure electrolytes with no additives then Elete liquid is quite good. It’s quite pricey though, all electrolytes are for some reason.

I don’t think I’ve noticed any improvement though in my symptoms when upright. I guess they help take away the hit by a bus feeling in the morning when so fluid deplete.

 

[Gingergrrl]

Can I ask anyone taking atenolol how much they take, how much they started off taking and what time they take it? Any negative side effects?

I have been taking Atenolol daily since 2013 for POTS (actually I briefly started on Metoprolol but fairly quickly switched to Atenolol). I take 25 mg per day in a divided dose so I take half tablet (12.5 mg) in the morning and the other half tablet (12.5 mg) in the evening before bedtime. I do not have any negative side effects from it. I have also taken Midodrine (off and on) for POTS since the end of 2014 at a wide variety of doses.

Hmm, I must be in the minority then. No one seems to want to put me on any prescribed potassium even though my level came back low on a recent test (result 3.2 range 3.5 to 5.3).

That is so strange that your doctor(s) will not prescribe potassium for you, especially since your blood level is below the range AND you are taking Florinef! Do they say why they will not prescribe it? I take Klor Con 20 MEQ daily b/c my potassium tends to run low and I am not even taking Florinef.

I was told to eat more bananas or sprinkle No Salt on foods to get my potassium level up again.

Another thing you can try is coconut water which is very high in potassium (but I'd ask again re: the prescription). You can buy OTC potassium but it is low dose compared to the prescription. I think the OTC is 99 mg vs. my prescription is around 778 mg (it's 20 MEQ but I think it's around 778 mg when you calculate it in mg).

 

[Galixie]

Do they say why they will not prescribe it?

I think it's an issue with specialties. The hematologist who initially prescribed the florinef considered his part done and passed me back to my primary gp to continue to treat/prescribe. She's a naturopath, so her instinct is to try things that aren't prescriptions. Also we haven't really been monitoring my potassium levels. I only found out it was low because I needed to see a gastroenterologist. They questioned why it was low, so I explained that it was probably due to florinef. They recommended eating more bananas and having my primary gp retest me. I think they figured it was outside of their purview. :: shrug ::

 

[Gingergrrl]

I think it's an issue with specialties.

That makes sense and everything is so fragmented and specialized here that if a doctor only treats the "left foot" than he cannot be bothered to look at the "right foot" . Hoping yours docs will actually talk to each other and prescribe you the potassium!