Research: Desmopressin acutely decreases tachycardia and improves symptoms in POTS

[Gingergrrl]

Hi - I see you have had some good responses already. I wonder whether any of the drugs you are taking could be masking central diabetes insipidus (CDI)? Can you associate the start of your lack of thirst with the commencement of any drug?

I take it because I do produce excessive quantities of urine, and it has transformed my life by ending the constant need to urinate which had destroyed my confidence in socialising, travelling, etc., and made it very hard to sleep.

I can't think of anything to add to what has already been said except to question recommendations to drink a lot of plain water, as this dilutes body fluids and can cause electrolyte deficiency by this means.

I wonder whether @zzz could add anything - he seems knowledgeable about fluid balance.

@MeSci I don't recall the lack of thirst as correlating with any specific medication and prior to having mono, it was never an issue for me. I used to drink coffee & diet soda at work (which now I haven't drank in years b/c I developed a complete intolerance to caffeine) and I always found it harder to drink plain water. But I never got dehydrated or had dysautonomia prior to mono and could drink as much or little as I felt like and was fine. Only now is it a major issue that I have to focus on.

You asked about @zzz and he actually sent me a ton of great into about desmopressin and fluid balance that was really helpful.

A urologist told me that, when thirsty during the night, instead of having a sip of water I should suck a sweet.

1. I would then be even more dehydrated.
2. I was prone to urinary infections and had also had bouts of candida, and sugar is probably not a good idea for either of those, especially in a state of dehydration.
3. Even then, I did not eat sweets. Was he in league with the dental profession...?
4. I am often prone to choking, and almost choked to death on a sweet as a child.

Sucking a sweet while lying in bed trying to get back to sleep??? When I told my GP about this advice he simply smiled. Oh well, killing off patients would save taxpayers' money...

That is crazy advice but not surprising. I guess if they kill us all off they do save money for the government and insurance companies!

Good grief @MeSci! I'm surprised your consultant didn't offer you a prescription for mint humbugs !!

@Revel, I just Googled mint humbugs and learn something new every day from my fellow PWC's in the UK.

My cardiologist was the first doc to suspect I had CDI. Before I was put on desmopressin, he recommended I drink Powerade Zero for the electrolytes without the sugar. I know some patients haven put together similar mixtures on their own that are less expensive and that don't have the food coloring (I suspect my small intestine have been permanently dyed "cool blue").

@CBS That is funny b/c the best tasting of all the Pedialytes is the blue one but it is very hard to find. I end up having to drink the red or orange ones which taste awful .

 

[Revel]

@Gingergrrl, yes I take Ivabradine purely for POTS. It has helped with the discomfort I feel in my chest and reduced my tachycardia.

I compare the discomfort to having the weight of a house brick resting on my sternum, sometimes it feels heavier and then it's hard to breathe.

My tachycardia isn't fully under control on Ivabradine, but so far it's been the only drug I can tolerate. My heart rate is still much higher than it should be. However, it it has put a ceiling on the high spikes, so I guess without it I would feel even more worn out than I do!

 

[Gingergrrl]

@Gingergrrl, yes I take Ivabradine purely for POTS. It has helped with the discomfort I feel in my chest and reduced my tachycardia.

I compare the discomfort to having the weight of a house brick resting on my sternum, sometimes it feels heavier and then it's hard to breathe.

My tachycardia isn't fully under control on Ivabradine, but so far it's been the only drug I can tolerate. My heart rate is still much higher than it should be. However, it it has put a ceiling on the high spikes, so I guess without it I would feel even more worn out than I do!

@Revel Sorry for my delayed response and I was wondering when you said that Ivabradine is the only thing that you can tolerate, it you were unable to tolerate beta blockers (or if they did not help you?) I find that Atenolol stops my tachycardia but I get to the point where I convince myself that I don't need it and cut it from 1/2 to a 1/4 pill or stop it all together and then every single time, the tachycardia comes back.

Your description of feeling like the weight of a house brick is on your chest is very similar to what I experience. Does this happen for you only with exertion or also when you are lying down flat? For me it is 100% only with exertion and never when I am resting or lying flat. Your comment makes me wonder if most PWC's have this same experience but it is so common that people don't even talk about it anymore?

 

[Gingergrrl]

@MeSci @CBS @halcyon and @Revel I hope you guys don't mind me tagging you but I have some follow-up questions that I am still unclear about after asking about Desmopressin.

In my case, my lab results for vasopressin were undetectable (less than 1.0 on a scale of 1.0 to 13.3) and I realized that I am still unclear what vasopressin is actually measuring? Like I said, I do not have DI, polyuria, polydipsia or any of the standard reasons that someone would be given Desmopressin and I understand how dangerous it could be for me to take it (and I am not planning to take it.)

My questions are:

1) Why do you think my vasopressin is so low (since I do not have any DI symptoms) and

2) What actually is vasopressin measuring?

I am certain that I have low blood volume and I definitely have low blood pressure, shortness of breath, and tachycardia. How does the vasopressin lab result relate to these issues? Are there supplements that can fix it or only Desmopressin?

Thanks again for any additional feedback.

 

[ahimsa]

@CBS That is funny b/c the best tasting of all the Pedialytes is the blue one but it is very hard to find. I end up having to drink the red or orange ones which taste awful .

Have you tried the unflavored (clear) version of Pedialyte? There are also generic (cheaper) versions, e.g., Walgreens has one.

Just FYI, after I started drinking this stuff fairly regularly I decided to mix up my own. It saves money and reduces waste (e.g., plastic bottles).

 

[halcyon]

1) Why do you think my vasopressin is so low (since I do not have any DI symptoms) and

I'm not super knowledgeable in this area but I'm sure there can be multiple causes. It's a hormone that is manufactured in the hypothalamus and stored/released from the pituitary. There seems to be some suspicion that these two parts of the brain are damaged or otherwise disturbed in this disease. There are a number of steps in the process where things could be going wrong.

2) What actually is vasopressin measuring?

The test is measuring the levels of the hormone present in the blood. Levels of the hormone will naturally fluctuate throughout the day as your body attempts to maintain correct water balance in the blood.

I am certain that I have low blood volume and I definitely have low blood pressure, shortness of breath, and tachycardia. How does the vasopressin lab result relate to these issues? Are there supplements that can fix it or only Desmopressin?

I believe low vasopressin could explain low blood volume as well as low blood pressure. Vasopressin tells your kidneys to reabsorb water instead of losing it to the urine. Less water in the blood means lower volume and lower volume would lead to lower pressure. As @CBS mentioned before it acts directly on the cardiovascular system as well by weakly causing vasoconstriction which increases blood pressure.

As you've read, just kicking up the levels of the hormone in the blood can be dangerous. It's part of a carefully controlled feedback loop between the brain and the kidneys.

 

[MeSci]

I'm not familiar with all the ins and outs of vasopressin secretion, @Gingergrrl. There is some info here which I found from a quick search.

I would guess that you are not producing (much) vasopressin as your body doesn't perceive the need to produce it.

Perhaps something else is reducing your urine output and thus your thirst?

 

[Revel]

Ah, such is the paradoxical nature of POTS @Gingergrrl, low vasopressin, yet no thirst or increased urine output.

When I was first diagnosed, I was determined to discover which 'subtype' I had. Knowing this would surely make treatment options more clear. It was thought I was 'hyperadrenic' POTS, but I don't have the two most classic symptoms of thirst/excessive urination. It turns out that I don't fit any particular category as defined in the countless articles I have read since.

My consultant does believe that I am hypovolemic. On my last 24 hr urine collection test*, I excreted virtually to the ml what I had taken in that day (in the form of electrolytes, rice milk and soup). From this result, I assume the low blood volume issue isn't being fixed by my increased fluids/salt regime as I am still not retaining water, but I have not been offered any drugs to help (maybe it's contraindicated somewhere in my test results, no idea).

I get no indication of thirst (or hunger) whatsoever. Something's broken somewhere. Don't know if its the Renin-Angiotensin-Aldosterone System itself at fault or something elsewhere that is causing it to malfunction somehow.

I have tried various beta blockers for the tachycardia (including Atenolol) but they all made me extremely faint and dizzy when up and about (bp too low?).

The pressure in my chest is usually linked to activity. However, I can also get it when bedbound with PEM and I struggle to breathe then.

* What's with the 2 x 5l containers they give you for this test? Does anyone actually manage to fill both?? I was afraid they had mixed me up with a relative of Seabiscuit and were sending my specimen to the veterinary lab instead - I wouldn't wager any money on me 'going the distance' any time soon . . .

 

[MeSci]

Ah, such is the paradoxical nature of POTS @Gingergrrl, low vasopressin, yet no thirst or increased urine output.

When I was first diagnosed, I was determined to discover which 'subtype' I had. Knowing this would surely make treatment options more clear. It was thought I was 'hyperadrenic' POTS, but I don't have the two most classic symptoms of thirst/excessive urination. It turns out that I don't fit any particular category as defined in the countless articles I have read since.

My consultant does believe that I am hypovolemic. On my last 24 hr urine collection test*, I excreted virtually to the ml what I had taken in that day (in the form of electrolytes, rice milk and soup). From this result, I assume the low blood volume issue isn't being fixed by my increased fluids/salt regime as I am still not retaining water, but I have not been offered any drugs to help (maybe it's contraindicated somewhere in my test results, no idea).

I get no indication of thirst (or hunger) whatsoever. Something's broken somewhere. Don't know if its the Renin-Angiotensin-Aldosterone System itself at fault or something elsewhere that is causing it to malfunction somehow.

I have tried various beta blockers for the tachycardia (including Atenolol) but they all made me extremely faint and dizzy when up and about (bp too low?).

The pressure in my chest is usually linked to activity. However, I can also get it when bedbound with PEM and I struggle to breathe then.

* What's with the 2 x 5l containers they give you for this test? Does anyone actually manage to fill both?? I was afraid they had mixed me up with a relative of Seabiscuit and were sending my specimen to the veterinary lab instead - I wouldn't wager any money on me 'going the distance' any time soon . . .

I was given a container that wasn't large enough, and had to improvise with a clean lemonade bottle for the excess! I mean - they are testing for polyuria, yet don't provide a container large enough for a person who is even mildly polyuric!

And don't get me started on the small containers my previous GP practice gave me for small samples, to fill while there. Hallo...I am a woman...how on earth am I supposed to direct it into that...and bearing in mind my suspicion of a nasty infection that is transmissible through urine, should staff be exposed to the contamination of the outside of the bottle that would be almost inevitable from attempts by a female to fill it?

My experience of getting desmopressin prescribed suggests that UK doctors are reluctant to prescribe it, almost to the point of paranoia. Yet it is extremely safe when taken appropriately.

Re hypovolaemia, I am currently going through some scientific papers on how this can be diagnosed, particularly in the situation of hyponatraemia. I will return with my findings, but it may be some time...

 

[Gingergrrl]

@halcyon

I'm not super knowledgeable in this area but I'm sure there can be multiple causes. It's a hormone that is manufactured in the hypothalamus and stored/released from the pituitary. There seems to be some suspicion that these two parts of the brain are damaged or otherwise disturbed in this disease. There are a number of steps in the process where things could be going wrong.

You are more knowledgeable on it than me by far and it makes sense that something in PWC's is damaged in the brain that secretes this hormone (and probably other hormomes, too.)

The test is measuring the levels of the hormone present in the blood. Levels of the hormone will naturally fluctuate throughout the day as your body attempts to maintain correct water balance in the blood.

I had the test in the morning and I attempted to drink two cups of water before the test b/c otherwise the technicians cannot get any blood from my veins. Could this alter the results?

I believe low vasopressin could explain low blood volume as well as low blood pressure. Vasopressin tells your kidneys to reabsorb water instead of losing it to the urine. Less water in the blood means lower volume and lower volume would lead to lower pressure. As @CBS mentioned before it acts directly on the cardiovascular system as well by weakly causing vasoconstriction which increases blood pressure.

Then it sounds like the connection is there for me (low vasopressin, low blood volume and low BP) as well as the weak vasoconstriction (more low BP) if I am understanding correctly?

As you've read, just kicking up the levels of the hormone in the blood can be dangerous. It's part of a carefully controlled feedback loop between the brain and the kidneys.

That is why I said no to this med and don't want to further mess up this feedback loop (which I assume is already messed up in my case although maybe in a different way since I do not have DI.)

 

[Gingergrrl]

@MeSci

I'm not familiar with all the ins and outs of vasopressin secretion, @Gingergrrl. There is some info here which I found from a quick search. I would guess that you are not producing (much) vasopressin as your body doesn't perceive the need to produce it. Perhaps something else is reducing your urine output and thus your thirst?

Thank you for the great link and when I do a Google search, I never seem to find all the stuff that you guys do! My doctor said I could wait and re-do the vasopressin test without drinking much the day before (which is my normal state unless I force myself to drink as I am now) but I am not sure how/if the results would be different?

I was given a container that wasn't large enough, and had to improvise with a clean lemonade bottle for the excess! I mean - they are testing for polyuria, yet don't provide a container large enough for a person who is even mildly polyuric!

I was the opposite and only filled up a fraction of the container but in my case I was being tested that time for catecholamines and other stuff (not polyuria.) Both times they said I had dehydration and I had forced myself to drink as much as I could!

My experience of getting desmopressin prescribed suggests that UK doctors are reluctant to prescribe it, almost to the point of paranoia. Yet it is extremely safe when taken appropriately.

That is interesting and I am having the opposite experience here with my doctor wanting me to take it but me feeling it is not right in my individual case (which he respects and said it is my choice.)

Re hypovolaemia, I am currently going through some scientific papers on how this can be diagnosed, particularly in the situation of hyponatraemia. I will return with my findings, but it may be some time...

Take your time and I would love to read anything that you find (hopefully you can interpret it into regular language for me!)

 

[Gingergrrl]

@Revel

Ah, such is the paradoxical nature of POTS @Gingergrrl, low vasopressin, yet no thirst or increased urine output.

When I was first diagnosed, I was determined to discover which 'subtype' I had. Knowing this would surely make treatment options more clear. It was thought I was 'hyperadrenic' POTS, but I don't have the two most classic symptoms of thirst/excessive urination. It turns out that I don't fit any particular category as defined in the countless articles I have read since.

@Revel, I have no idea if I fit into any specific subtype of POTS either and my symptoms change and are not consistent.

My consultant does believe that I am hypovolemic. On my last 24 hr urine collection test*, I excreted virtually to the ml what I had taken in that day (in the form of electrolytes, rice milk and soup). From this result, I assume the low blood volume issue isn't being fixed by my increased fluids/salt regime as I am still not retaining water, but I have not been offered any drugs to help (maybe it's contraindicated somewhere in my test results, no idea).

Does "consultant" mean doctor or someone who specifically treats POTS? I am still learning all the UK terms and not to get off topic but when you guys say "surgery" does that just mean a regular doctor's appt or office visit? Okay, back on topic... I am the same way and if I did not force myself to drink for the 24 hour urine test, I would have had nothing for the container! I was never offered meds for this issue until the test showed I had zero vasopressin.

I get no indication of thirst (or hunger) whatsoever. Something's broken somewhere. Don't know if its the Renin-Angiotensin-Aldosterone System itself at fault or something elsewhere that is causing it to malfunction somehow.

I am exactly the same way and thought I was the only one! I guess I can occasionally feel hunger but usually if I am having shortness of breath, this cancels out the hunger and when I eat (especially in a restaurant) I only eat a fraction of the food b/c the portions are so big and then have leftovers for 2-3 more meals.

I have tried various beta blockers for the tachycardia (including Atenolol) but they all made me extremely faint and dizzy when up and about (bp too low?).

I have done well with Atenolol and have never fainted in my whole life. I rarely feel dizzy and I think I have just adapted to the lower BP?

The pressure in my chest is usually linked to activity. However, I can also get it when bedbound with PEM and I struggle to breathe then.

Mine is 100% linked to activity and if I lie flat, it corrects itself and I feel okay. But when I say "activity" it can be as little as trying to open a jar that is tight or putting a plate in the microwave that is above my head.

* What's with the 2 x 5l containers they give you for this test? Does anyone actually manage to fill both?? I was afraid they had mixed me up with a relative of Seabiscuit and were sending my specimen to the veterinary lab instead - I wouldn't wager any money on me 'going the distance' any time soon . . .

Revel, you are hilarious and your side comments crack me up (the other one about prescribing the mint candies too!) Thanks for making me laugh !

 

[MeSci]

@MeSci

Re hypovolaemia, I am currently going through some scientific papers on how this can be diagnosed, particularly in the situation of hyponatraemia. I will return with my findings, but it may be some time..

Take your time and I would love to read anything that you find (hopefully you can interpret it into regular language for me!)

No choice but to take time - lots else to do and brain is struggling with the info in the papers, which I am trying to compare between papers and with my own test results, and I have the typical ME problem of having great difficulty holding one bit of info in my head and trying to relate it to another bit. It's also looking as though there are additional complications/confounding factors in my own case, so it may turn out to be an epic task.

I can't guarantee to be able to translate into lay terms - someone else will probably be able to. It's a matter of having the time and energy. I will probably put it in a blogpost as it's not directly relevant to this thread.

 

[Gingergrrl]

No choice but to take time - lots else to do and brain is struggling with the info in the papers, which I am trying to compare between papers and with my own test results, and I have the typical ME problem of having great difficulty holding one bit of info in my head and trying to relate it to another bit. It's also looking as though there are additional complications/confounding factors in my own case, so it may turn out to be an epic task.

I can't guarantee to be able to translate into lay terms - someone else will probably be able to. It's a matter of having the time and energy. I will probably put it in a blogpost as it's not directly relevant to this thread.

@MeSci No worries and please don't do it at all if too stressful and time consuming. I am like a sponge and try to read everything you guys post and figure out if it relates to me. But never over-tax yourself with this stuff, I have done it and it is not worth it.

 

[MeSci]

Does "consultant" mean doctor or someone who specifically treats POTS? I am still learning all the UK terms and not to get off topic but when you guys say "surgery" does that just mean a regular doctor's appt or office visit?

Consultant means a specialist. The hierarchy puts them at the top, then the next down is a registrar, then there are...er...junior doctors...? Yes - surgery is an admittedly-stupid UK term for a doctor's office, as you call it. It usually applies to where a GP is based. And you call a GP a...PCP?

You say tomato, and I say tomato - it doesn't work in print!

 

[MeSci]

@MeSci No worries and please don't do it at all if too stressful and time consuming. I am like a sponge and try to read everything you guys post and figure out if it relates to me. But never over-tax yourself with this stuff, I have done it and it is not worth it.

I'm doing it for myself primarily, as it is something that has been bothering me ever since I had a really bad experience when suffering from severe hyponatraemia and they treated me as though I were overhydrated when I was dehydrated, and repeatedly dismissed what I said and treated me like a liar or an idiot, with one doctor actually accusing me angrily on the phone of causing it myself. They put me on fluid restriction and made me even more dehydrated, sending me home with constipation so severe that I hallucinated. I have got to get to the bottom of the issue (no pun intended). But I have to fit it in with a lot of other stuff I have to do.

 

[halcyon]

@MeSci I came across some articles last night that indicated that vasopressin is actually involved in sodium reabsorption as well. I also really think you were on to something with your blog post about cytokines and diuresis. I found piles of papers indicating that PGE2 antagonizes the aquaporin channels that vasopressin acts on.

I wonder if it's possible that vasopressin production is getting burned out over time trying to compensate. I have no idea if this is possible, just wild speculation.

 

[halcyon]

I had the test in the morning and I attempted to drink two cups of water before the test b/c otherwise the technicians cannot get any blood from my veins. Could this alter the results?

I can't say for sure, but it does seem possible that this could affect the results.

Then it sounds like the connection is there for me (low vasopressin, low blood volume and low BP) as well as the weak vasoconstriction (more low BP) if I am understanding correctly?

Perhaps, but keep in mind there are numerous other actors in the body when it comes to blood pressure regulation and fluid balance.

 

[MeSci]

@MeSci I came across some articles last night that indicated that vasopressin is actually involved in sodium reabsorption as well. I also really think you were on to something with your blog post about cytokines and diuresis. I found piles of papers indicating that PGE2 antagonizes the aquaporin channels that vasopressin acts on.

I wonder if it's possible that vasopressin production is getting burned out over time trying to compensate. I have no idea if this is possible, just wild speculation.

Oooh - I don't think I have that paper - many thanks. I'll post the link in the comments on my blogpost, and please feel free to post any other relevant links that you have there.

I wish I had more time to study science instead of having to do mundane things like accounts and chores!

If I really can't find the time to do a decent summary on hyponatraemia and hydration status I may just post links and abstracts for other people to tackle if they can.

I very much welcome people using my blogposts as a place to post their own links, theories, etc. A bit like a disorganised Wiki or chaotic mini-library!