H-PoTS subtype and salt!

[Looking_for_light]

 

Is lots of salt recommended for H-PoTS? 

if so, around how much per day? 

Relative I care for has a high BP, especially dia, and hasn't been lifelong - used to be low. 

No diagnosis, no meds for it. 

Terrible bouts of dehydration sensation seems to be one of the symptoms. 

Unfortunately seen conflicting advice on websites on this! 

Does anyone with H-PoTS and higher BP take salt tablets? 

Thanks! 

[Pistol]

@Looking_for_light I take in a lot of salt in y diet and I have HPOTS. However - sine HPOTS causes hypertension it is recommended to check with the cardiologist first to see if high salt intake is recommended

[Sarah Tee]

A good first step would be to keep a log of your relative's fluid and salt intake and the dehydration episodes. Record their heart rate, blood pressure and symptoms as well. This should help their doctor work out what is going on and you may identify a pattern that is bringing on these episodes.

(I wasn't quite sure when you said "no diagnosis" whether you meant POTS hasn't been diagnosed or the high blood pressure hasn't been diagnosed. Either way, best to speak to doctor/specialist about it all before trying anything that could affect their electrolyte balance or BP.)

Best wishes for getting it sorted out.

[MomtoGiuliana]

I was never diagnosed with any particular syb-type and some specialists don't bother with trying to determine a subtype, but just focus on finding treatment that helps, which can be very individual it seems.  When I have severe relapses I can have high bp especially diastolic--especially when standing.  When not in a flare my bp is good and on the low side.  What has helped me is a beta blocker (pindolol is my specialist's bb of choice, although it seems others on the forum here typically use other bbs) combined with salt and high volume of water/fluids.  It's also important for me to eat potassium rich foods bc my potassium level tends to go a little low either bc of the salt or some other reason, when in a flare.  I try to eat fruits and juices rich in potassium.  Of course a potassium rich diet is generally healthy for anyone.  (Taking a potassium supplement is something only to do under dr's supervision).

[Looking_for_light]

Many thanks for the thoughts.

@Sarah TeeWill have to do. So difficult when every waking moment has to be totally focused on it. Our lives solely consist of the v basics and drudge and have done for v long time. Naturally takes huge toll. So hard to retain hope when med care here's so woefully inadequate and battling it v often makes ppl even more sick - it's devastating. 

@MomtoGiulianaUnfortunately, BP too high every day, all times, especially dBP. Some presentations will be less clear, but sadly, all symptoms are textbook HP (and severe daily). Hypovolemia seems apparent too. 

BB last resort - suspected mcas too. 

Sadly, most fruits no-go - reactions poss suggesting reactive hypoglycemia (RH) and/or rapid gut transit / dumping syndrome. 

Hopefully quite a bit in varied veg, but then digestive probs may hinder it.   

 

What should salt-potassium ratio ideally be?

What role does potassium play in it all? 

Thanks! 

 

 

 

 

 

[Looking_for_light]

Which salt tablets do doctors use? 

Do they also contain K for balance? 

Are they the same all over the world? As always, suppose they would be a last resort here! 

Thanks!

[MomtoGiuliana]

My dr warned me not to over-do salt.  He was never clear about how much to take but he said to salt liberally (as well as drink fluids regularly).  I did take salt tablets also, years ago, for awhile, when symptoms were severe.  Typically I put salt in drinks and food now when in a flare.  One reason not to over-do salt is that it can result in lowered potassium according to my dr.  And I seem to be susceptible to that anyway.  When my potassium goes even a bit low I typically feel worse, including more heart palpitations.  I use coconut water also, which is rich in potassium.  

We always recommend that patients consult their doctors regarding medications and diet, including salt.  Members can of course share what treatment they use and what works for them, but members cannot advise other members.

[MikeO]

I was approved for 1500 mg of sodium. That raised by blood sodium to 140 which is pretty optimal. 

[Looking_for_light]

@MomtoGiulianaYou're right - it's all exceedingly complex, unfortunately! 

It's torment for the many sufferers who due to the structures of their nations, and highly challenging circumstances, can't access who they need to see, get a diag and try meds to see if they help lessen the nightmare. Naturally results in flailing around in the dark. 

Perhaps similar elsewhere, but most medics here don't even know of dysautonomia, or don't believe in it as an emergency worker said (poss because they don't believe in it?)!

They should all look at this brilliant site! 

It's inevitably  extremely tough. 

[Sarah Tee]

@Looking_for_light, yes, I understand the drudgery aspect. I've been unwell for 18 years, and the past 5 of those I have relied on my dad a lot for help. The last 2 years I have gotten worse and he is now my carer. It is horrible that he has to spend his retirement looking after me.

Medical treatment for dysautonomia seems to be lacking in every country, at least until you finally get onto a specialist. I'm in Australia and it took me 16 years to get to a specialist. I am guessing you are not in the US?

If you want to check the medical consensus for salt and fluid loading (general advice), Dr Peter Rowe and Dr Satish Raj have both written/spoken on this in recent years. (Lots of other specialists too, and research papers if you have time to look, just mentioning the two I happened to first come across and find understandable.)

Dr Rowe has a good summary here:

https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

And Dr Raj has several lectures:

https://vimeo.com/589514511

https://vimeo.com/540671549