Looking_for_light

@KiminOrlandoMany thanks! Your input and kindness is v always much appreciated : ) 

Anyone have frequent bouts of horrible SEVERE stomach noises and strong movement of air/water(?) all around guts (often with severe hunger!) due to transit issues - gastroparesis or rapid emptying / dumping syndrome? 

Is water incorrectly being drawn into intestine, and poss resulting in hypovolemia (and hypoglycaemia)? 

@Pistol

By take fibre, do you mean eat it or supplement it? If so, what with? 

Can IBS-D override the constipation common in gastroparesis? 

Thanks!

Hi all,

Anyone tried any of these meds for hypovolemia and hyper PoTS combo (with constant high BP, especially dBP and especially stood, and SVT!)? 

(Side note: is SVT common in dysautonomia?)

- Methyldopa? (generic) 

- Verapamil? (a CCB) (names - half Securon, Securon, Verapress, Vera-Til, Vertab etc) 

- Diltiazem (a CCB) under various time releases and brands. Fortunately helps @Pistol

whose input has been v helpful : ) 

Were they alone, or in combo with other meds? 

How long was the trial?

Your starting daily dosage? 

Your max daily dosage? 

Any symptom reduction? 

If yes, which one(s)? 

Any side-effects (know everyone is different)? 

How long did it take to obtain any benefit from the med(s)? 

Was it along with scripted salt tablets?

Thanks!  

Unfortunately, no isotonic drinks around. Will look at the kindly flagged recipes.

Also wondering if anyone's tried the natural electrolyte solution that's made from seawater? 

As a newbie, was unaware item links couldn't be used. Hoping it's permissable to just mention its name instead?

Contains minerals including chloride, sodium and K. 

It's such a lot - can't afford any mistakes. 

Wonder if chloride impacts dysautonomia in any way.  

Thanks! 

Unfortunately, seems no isotonic drinks etc around!  

Anyone tried a natural option, or anything like it? 

It's such a lot and can't afford any mistakes.  

Do the various mineral amounts in 2.5ml seem too high if not SR?! 

Anyone possibly know anything on how chloride impacts dysautonomia's? 

Anyone know anything on the ionic nature of it? 

Thanks! 

@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. 

One of major problems with c-19 - very often mimics a cold, especially as it's become endemic. 

Data shows your symptoms you have are the most common now, inc runny nose & productive cough, when dry dominated at the start. Fever and anosmia now much rarer, but unfortunately most not aware. 

If you can't confirm with test, and not already isolating due to conditions, always best to, so as to not pass it on. Newer variants sadly still so nasty - deadly for some - and causing such devastating long-term conditions. 

Recover soon, very best wishes. 

Clon not even available in patches here!! Due to that, and that it will be extremely hard to access, guess will have to be v last resort. 

Someone here has a great H P blog and was taking Clon, but can't recall Dinet handle! Anyone know? They mentioned antioxidants in a post - wonder which ones are used up too quick in dysautonomia?! 

Thanks! 

@PistolWhat symptoms does Barretts cause? 

Can frequent choking on foods/drinks be part of Barretts or dysautonomia? 

Is an EGD the same or similar to a endoscopic ultrasound? 

Thanks! 

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!

@DysautonmiaMatt No, nothing - it's a desert with no oasis! 

Things are so challenging we can't do Christmas gifts, but if Santa was taking requests it would be a sack of pepcid, xyzal, vitassiums etc, Sadly, on screen miracles don't happen in real life. 

Thyroid needs checking - accessing full panel also known to be an absolute nightmare though!!

Thanks! 

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! 

Many thanks - much appreciated.  

A linked video sadly confirms it. Can only hope it doesn't happen again. 

Is it known what factors triggers these extreme tremors in dysautonomia? 

Thanks again. 

@DysautonmiaMatt

Oh dear - SR won't be accessible here. Medics would probably laugh!

Honestly, it's heartbreaking. 

Anyone tried half a 99mg normal release tablet a day?

With lots of fluid, would this be too much strain on kidneys?  

Sadly, avos no go - unmanaged suspected mcas! 

H1 blockers v limited and inadequate otc here, and H2 not even available otc!! 

That said, ? if stomach acid already low, and if lowered further would create extra vulnerability to infection in poor immunity situation! 

Also, now concerned about H1 vasoconstriction effect. 

@Pistol can you elaborate on this?

You have enough to contend with - must be such a relief to not have that extra complicating burden! 

Gosh, it's all super complex!! 

Thanks! 

@DysautonmiaMatt

Wasn't aware K came in supplements. What are the reasons to be wary of them? 

Thanks! 

@Pistol

Do you or anyone know if verapamil is very similar to D? 

Thanks! 

@MikeOWould a neurogenic aspect explain terrible bladder symptoms or would it more likely lead to inability to urinate?

Thanks! 

Know everyone's different, but what are all the adverse effects that people had from Clonidine? (C)

Could a slim slither of C patch be combined with the smallest dose of Diltiazem (D) as a start for H P & SVT (possibly also Afib)? 

Anyone with Hyper P tried methyldopa (M)?

Could smallest dose of M be combined with the smallest of D or would they both act too similarly?  

Probably won't be access to any of it anyway, so all hypothetical scenarios! 

Thanks! 

@MikeO

What's the whoosh like - the presence of intense searing pressure through head, especially at front upon standing?

Anyone have that? 

@Pistol Which gastro meds have helped the variety of GI issues? 

Which test(s) did you have to diagnose transit time? 

Who here has rapid gastric emptying / dumping syndrome and what do you take for it? Acarbose? Octreotide? 

Thanks! 

Great she can tolerate caffeine. Sadly, dark choc high histamine too. Total no-no in our case (devastating)! 

Heard wrist cuff monitors not as accurate as arm. Can anyone here confirm this? 

Could you get arm version to compare? 

Can't even access such electrolytes here! Sound so helpful. Anyone make their own up? Any recipe(s)? 

Sadly, so much really resonates. Hypovol chart - wow! As suspected - fits picture too! 

My relative's stuck in nightmare with all this, which came on insidiously on top of other totally debilitating, life-limiting chron conditions (suffering myriad dreadful symptoms inc severe pain which seems to enhance the hpa axis aspect) and needs someone to simply acknowledge - "you've been seriously going through it",  so doing that for your wife and you right this second. Hang on in there. There's light at the end of the tunnel for you both.