Looking_for_light

How cool. Must mean such a lot to your wife to have you by her side when facing it all! She's so young and with treatment will regain QOL. Medicine sorely needs people like you! 

What's w.r.t? Sorry, always lots of abbreviations here so it's taking time to understand them all. You sound extremely knowledgeable on so many medical matters, wondering if you're in the profession. If not, then you could have been! 

Do you, or anyone here, know all the signs and symptoms of hypovolemia? 

Are not feeling hydrated no matter how much is drunk, and a frequent sensation of dehydration with an extremely dry, taut throat at any time of day indications? 

Thanks!

Be sure to start at the lowest possible Florinef dose, assessment of calcium levels and bones, and have her eat more healthy foods rich in calcium, boron and vitamin k, eg leafy greens, broccoli, cauliflower, chickpeas, tofu, tempeh, tahini... etc, as it sounds as if it can play a role in osteoporosis, unfortunately. 

Sending thoughts to you both. 

@Pistol As well as feeling horrendous for sufferers, does the increased circulation of stress hormones in H P and lots of adrenaline dumps etc do permanent damage the body (with no treatment)?! 

Thanks! 

@PistolIs high dBP especially characteristic of H P? If so, do you know the mechanism of that? 

If so, my relative's sadly textbook in that regard too! Devastating symptoms are a living nightmare. 

Do both BP measures have to go up by a certain number on Tilt to confirm H P? 

Understand its mechanisms a lot more after you described vasoconstriction - thanks! 

Your CCB can also be used for SVT. Do you have that too? Is it (or other arrythmias) common in H P? 

Any specialist (rare as hen's teeth here!) would agree with us - subtype is vital! Highly concerning hearing that a top cardio here thinks it isn't, but doc isn't a specialist, but a cardio with an interest in the subject - different! 

Have you heard any members with H P mention any helpful treatment with any uk docs?  

Dire situation.   

Thanks! 

On 11/26/2022 at 9:45 AM, Pistol said:

@rtoth256 I have HPOTS with high BP, especially the diastolic. My BP is currently controlled but it took many years to find the right meds. Before seeing my excellent autonomic specialist I was seen by various cardiologists that did not know anything about POTS. Since Midodrine is a first attempt meds for POTS I was put on it, but of course it did not help. Once I got in to see the specialist he took me off it right away and said that Midodrine should not be used in people with high BP - like in HPOTS. It is usually used for LOW BP. 

The subtype is AVSOLUTELY important because different types will respond to different meds. Even a physician with little knowledge of dysautonomia should know that!

Thanks! 

Tremors - my relative is always shaky, but suffered the most scary event lately - being woken up in the early hours by out of the blue severe whole body tremors!

Dryest ever mouth too - lips stuck fast to teeth! Anyone else? Is that from the norepinephrine?! 

Do these horrific events happen in all PoTS or are they most prevalent in H PoTS? 

Sys BP was 156! HR very tachycardic, but can't recall that or dia BP (usually significantly too high anyway though), due to the distress of it all!  

Medical call handler dismissed it as a fever! It wasn't - no temp (colder than should be as always) - things are in such a state! Seemed very different to rigors. Nobody to help us to hospital, but the onslaught of that would have made situation even more scary and distressing! 

Thanks! 

Thank you so much! All your replies are very appreciated. 

It was a privilege to read your story. 

Are you or your family hypermobile? 

What is the specific gene issue with H P (it won't be tested for here regardless!)? Have any of you been tested for the specific gene issue? 

Do you think sex hormones / hormonal changes have a role in onset / exacerbation of H P?   

So much on it all to know! 

A huge concern is mcas impeding med options, (which are extremely limited over here anyway)! That, H P and other serious conditions together is inevitably an absolute disaster! 

What was your experience of clonidine? Was it in patch form? 

We would give anything to have the input of Dr Grubb! 

Have your symptoms been progressively worse since they came on severely? 

We're under severe stress and strain due to it all, made even worse as things are dire in every possible way here! 

Thanks again. 

Many thanks for the thoughts. 

Clon does sound bit scary and will inevitably be very hard to access over here anyway, but may be one of only options! 

Anyone with H POTS tried the patches? Very gradual titration by cutting tiny strips? 

Many symptoms of mcas, so unfortunately very wary of BB in this instance. Going to be very challenging! 

Plus, they affect metabolism and in someone unable to exercise due to symptoms & conditions, that would be v concerning. 

Sadly, going abroad isn't possible for various reasons inc no resources. 

Thanks again. 

On 8/30/2021 at 8:34 PM, Abe said:

I read something about the Roemheld Syndrome few years back at it seemed to sync with me.  I get instant stomach discomfort and tachy after I eat, no matter how small.  The explanation I got was that if your digestive system produces too much gas/pressure after food, it pushes your diaphragm up against your heart with then tends to trigger some sort of panic attack and then a tachycardia.  Every food I eat causes an adrenaline rush and in my case, it feels like life is being squeezed out of me.  Studying through all these this past weekend, I also learnt that this might be caused by Small Intestinal Bacteria Overgrowth (SIBO).  Its all so confusing so I decided I am going to set an appointment with my doctor to see what he can do to get some answers.

Is SIBO common in POTS? 

On 7/9/2007 at 6:18 PM, Sunfish said:

though it's probably not what is going on with all who have problems after eating, one possibility is something called dumping syndrome. essentially it's a motility problem wherein the stomach empties too fast (as opposed to gastroparesis which is too slow). it's most discussed in the context of those who have had gastric bypass surgery but can happen on its own as well. it tends to happen more with certain types of foods but isn't limited to those either. and it can cause tachy, dizziness, GI discomfort, sweating, flushing, & other things as well. for some it might be something to look into.

hope this helps,

melissa

Been wondering if dumping syndrome (early / late) exactly the same as rapid gastric emptying? 

Heard the latter can often occur in POTS. Is that widely known by doctors?  

On 11/17/2022 at 10:07 AM, Pistol said:

@JennKay I am on Carvelidol but that did not help enough for tachycardia and PVC's and also did not keep my high BP down. When my specialist added Diltiazem to the mix things improved greatly. On both meds ( which were gradually increased and I now take 12.5 mg Carvelidol and 240 mg Diltiazem ) I rarely have PVC's, my BP is mostly stable and the tachycardia is manageable. I have HPOTS, though, and my symptoms are brought on by excessive vasoconstriction. 

We started with 1/2 tab of 30 mg twice a day and then gradually increased until I was on the high dose. CCB was a game changer for me, I hope it works for you!

How do people ascertain if their symptoms are caused by excessive vasoconstriction? 

Thanks!

Not come across evidence on specific diets for persistent daily headaches.

A healthy, anti-inflammatory, Mediterranean-style diet with lots of fiber would keep bowels and sugar stable. 

You're right that would be classed as

new persistent daily headache

rather than migraine.

Worth looking that term up to look for treatment options. 

Have you considered mast-cell activation as a possible factor? Worth looking to see if it resonates with the overall picture. It causes headaches too. 

So nice to feel that can help people. 

Issue over here is sadly hardly any knowledge, care or help, hence our desperation to seek guidance from patients. 

Very best of luck to you both

Hi there

Any tips and general thoughts on how to  manage severe suspected H PoTS (relative has all the symptoms but no diagnosis and not likely for a long time!)? 

It's inevitably extremely difficult and challenging with no light at the end of the tunnel. 

Compression stockings & several smaller meals unfortunately not viable. 

Other than extra clothes etc, any tips for constant coldness and ICE-COLD extremities?

How much water per day is advised for this subtype? 

Do fluid meals, eg soup, count or not as they have to go through digestion?  

Is salt or salt tablets generally advised for those with H PoTS?

Thanks! 

When unable to access a Tilt with blood draw, seems that uk doctors would likely just diagnose PoTS, rather than H PoTS? 

Feels very important to establish subtype(s). 

Is a catecholamines urine test a helpful substitute to confirm H PoTS? 

Does this test often give false negatives (for example if not stored properly etc)?

Thanks! 

What conditions etc have people here identified as the underlying causation of their H POTS? 

A consequence of genetics, hypermobility,  autoimmunity, another chronic condition etc? 

Is H PoTS often classed as secondary or more as primary PoTS? 

Thanks! 

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! 

Hi everyone, is there many uk members here for specific advice? 

Sadly, a relative has suspected H PoTS - every symptom of it - so terrible - things are dire!

BP is high, especially dia, and that's not been lifelong - it used to be low. 

Hypovolemia likely too. Even accessing a diagnosis will likely take a very long time! Things are dire.  

Tilt may be possible after massive wait, but very unlikely Tilt with blood draw will be available to confirm subtype. 

A top cardio here says  subtype isn't important - surely that's not right, esp if H POTS with high BP?! 

Anyone been able to try methyldopa, clonidine (patches or tablets) or desmopressin here? What have your experiences of accessing them been like? Cardio above unfortunately doesn't sound to use any of them!

Don't suppose pyridostigmine is ever accessed over here?

Any thoughts, ideas, suggestions?  

Will do more threads on other issues...

Thanks so very much in advance and best wishes to you all. 

On 11/11/2022 at 4:52 PM, KiminOrlando said:

I believe my migraines stem from my Mast Cell issues (lots of anecdotal reasons)

There's lots of evidence for this. Would say to seek a professional who agrees with this and try to go down the MC stabilization route to see if it helps. 

So sorry and saddened to hear this. I'm in a state of despair due to being a carer for a relative with suspected dysautonomia and suffering from other serious conditions. 

Wonder what experienced people here think? 

Did they tell her what subtype it is? Possibly sounds more like neuropathic, perhaps with hypovolemia? 

Have renin and aldosterone been tested? 

Compression garments up to the waist for the blood pooling?

More salt or salt tablets? 

Eating extra fluid - e.g soups? 

Possibly enquire about trying another option - Fludrocortisone (Florinef)? 

It will be very frustrating but many things need to be tried for a while to see improvement. 

Really hope things improve soon. Take care.