The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Research: Desmopressin acutely decreases tachycardia and improves symptoms in POTS

Discussion in 'Other Health News and Research' started by CBS, Jul 26, 2012.

  1. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    847
    This may be an avenue for significantly reducing much of the morbidity in ME associated with dehydration, tachycardia, OI, etc. We need more doctors willing to investigate this avenue of treatment for a subset of our symptoms. Personally, it is my impression that a primary reason for the failure to go down this road is fear (patients, advocacy groups and doctors); fear of admitting that this disease is as serious as it really is (we're talking indirect evidence of brain damage - direct evidence is accumulating), fear of a maligned medication, fear of deviating from the "standard of care," and doctors who are unfamiliar with pituitary and hypothalamus function and as a result fear going into areas where they have no experience.

    Desmopressin acutely decreases tachycardia and improves symptoms in the postural tachycardia syndrome.

    Coffin ST, Black BK, Biaggioni I, Paranjape SY, Orozco C, Black PW, Dupont WD, Robertson D, Raj SR.

    Autonomic Dysfunction Center, Division of Clinical Pharmacology, Department of Medicine, Vanderbilt University, Nashville, Tennessee.

    Heart Rhythm. 2012 May 3. [Epub ahead of print]

    BACKGROUND: Postural tachycardia syndrome (POTS) induces disabling chronic orthostatic intolerance with an excessive increase in heart rate on standing, and many patients with POTS have low blood volume. Increasing blood volume is a promising approach to this problem.

    OBJECTIVE: To test the hypothesis that desmopressin (DDAVP) will attenuate the tachycardia and improve symptom burden in patients with POTS. METHODS: In this protocol, patients with POTS (n = 30) underwent acute drug trials with DDAVP 0.2 mg orally and placebo, on separate mornings, in a randomized crossover design. Blood pressure, heart rate, and symptoms were assessed while seated and after standing for up to 10 minutes prior to and hourly for 4 hours following study drug.

    RESULTS: The standing heart rate was significantly lower following DDAVP than placebo (101.9 ± 14.5 beats/min vs 109.2 ± 17.4 beats/min; P <.001). Standing blood pressure was not affected (P = .28). The symptom burden improved with DDAVP (from a score of 18 ± 18 arbitrary units [AU] to 13 ± 15 AU at 2 hours) compared with placebo (from 18 ± 17 AU to 19
    ± 16 AU; P = .010).


    CONCLUSIONS: Oral DDAVP significantly attenuated tachycardia and improved symptoms in POTS. The safety profile of this approach would need to be examined before it can be recommended for routine treatment of these patients.
     
    MeSci, Sidereal and NK17 like this.
  2. adreno

    adreno PR activist

    Messages:
    4,841
    Likes:
    11,024
    Although statistically significant, I don't find the results of this study very impressive. I can attenuate tachycardia more effectively with potassium. Potassium also increases release of vasopressin, though I don't suspect this to be the single mechanism:

    http://www.springerlink.com/content/lg012g0783470j65/

    But I would like to hear if any members have had success with desmopressin?
     
  3. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    847
    I agree that this is likely not a simple single mechanism but I know that for me it is a primary mechanism. As for the clinical significance (as opposed to the statistical stability of the difference between groups), I would suggest that the dose of desmopressin tested was far below the optimal treatment dose of roughly 0.4-0.8 mg/day. Another short coming of this study is that it only looked at a single one time dose of desmopressin (without increased fluid intake - THE key to re-hydration), hardly enough to restore proper fluid balance in someone who has been chronically dehydrated for months or even years. That said, these results are highly suggestive of an area needing further serious investigation.
     
    MeSci, NK17 and Sidereal like this.
  4. voner

    voner Senior Member

    Messages:
    547
    Likes:
    857
    CBS,

    Have you seen or read this one? I'm not sure if it's a reply to the one you posted??? I try to my local university to find at least the abstract, and I can't find anything but this.

    Heart Rhythm. 2012 May 24. [Epub ahead of print]
    Desmopressin in the postural tachycardia syndrome.
    Weinstock J.
    Source
    Cardiac Arrhythmia Center, Division of Cardiology, Tufts Medical Center, Boston, Massachusetts.
    PMID: 22634243 [PubMed - as supplied by publisher]
     
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,601
    Likes:
    24,756
    USA
    I am reviving this old thread and tagging @CBS @Sidereal @MeSci and @Thinktank and wanting to hear people's experiences with Desmopressin. I have never taken it but my CFS specialist recommended it today b/c my blood test for vasopressin was so low, the level was undetected. The range was 1.0 to 13.3 and mine was lower than 1.0 which he said is common in his CFS patients with dysautonomia.

    He said to try 1/2 pill (0.05 mg) in the mornings to see how I do with it. When I researched it, I was concerned b/c it said it is for excessive urine and thirst and I have neither. I am literally never thirsty and if didn't push myself, I would only drink 2-3 cups per day. When I push myself, I can drink 5-6 cups but rarely ever make it to eight as recommended. I also rarely have to urinate and when I've done prior 24-hour tests that collect my urine, doctors are always shocked at the low amount.

    So taking this into account, I am not sure if Desmopressin is right for me? I trust my doctor and he said that it can increase my blood pressure and blood volume and hopefully decrease my fatigue and shortness of breath. Then I found this thread that said it can maybe decrease tachycardia and POTS. So I am torn b/c if it could reduce my autonomic problems (along with Midodrine that I currently take) than I would like to try it.

    However, it seems to be prescribed for diabetes inspidus (DI) which I do not have and I am afraid it could cause me to retain too much water. I read another post about children who took it at night for bedwetting and ended up dying from seizures or excess salt (or too little salt- now I am confused?!!) Am I supposed to drink extra water & salt with it like with Florinef or is this med different? Florinef did not work for me and I stopped it a few weeks ago and actually feel better without it.

    I guess I am trying to understand if taking Desmopressin helps increase vasopressin (what I am lacking) even in the absence of the symptoms that it seems to be prescribed for. Thanks in advance for any info.
     
    MeSci and NK17 like this.
  6. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    Did they measure your plasma osmolality at the same time? There is more to water balance than just vasopressin. Have you had your aldosterone and renin levels checked?
     
    keenly and Gingergrrl like this.
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,601
    Likes:
    24,756
    USA
    My aldosterone and renin levels are normal but I do not believe I have ever had my plasma osmolity checked. What is that?
     
  8. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    Plasma osmolality is a measure of solutes present in the blood. With improperly low vasopressin levels you could expect to have higher plasma osmolality as you would be losing more water to the urine and your blood would become more concentrated.

    Are your plasma sodium levels normal?

    My understanding is that (central) diabetes insipidus is basically caused by low vasopressin, yet it sounds like you don't have any symptoms of DI (increased thirst and urine output).

    I would be a little concerned about taking it as well given your lack of symptoms. You may want to discuss this a bit further with your doctor.
     
    MeSci, NK17, zzz and 1 other person like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,601
    Likes:
    24,756
    USA
    @halcyon Thank you for the info and great questions. My sodium levels were normal when I had blood tests recently in the hospital (and they have always been normal as far as I know.) But I know I have not had that osmolality test.

    I definitely do not have any symptoms of DI and actually have the opposite. That is why I am concerned about taking it or even trying it once. My Dr said without vasopressin, my body is not maintaining blood volume (which I believe to be correct) but I am doing so much better with the Midodrine that I hate to add another new element so soon.

    Are there any other ways to increase Vasopressin besides taking Desmopressin?
     
  10. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,440
    Likes:
    21,683
    Albuquerque
    @Gingergrrl

    Here are 2 quotes from Rich that might be relevant...or might be more confusing! He was addressing DI but does explain how vasopressin is formed--has to do with enough ruduced glutathione in the cells. Were he still here, I'd bet he'd have a good answer to your reverse situation--low vasopressin without DI.

     
    Sidereal, NK17, MeSci and 1 other person like this.
  11. halcyon

    halcyon Senior Member

    Messages:
    2,307
    Likes:
    5,391
    I've also read that high levels of cortisol can inhibit action of vasopressin as well. I don't know if it actually causes a decrease in levels or if it just interferes with it's action on the kidneys.
     
  12. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    847
    Hi @Gingergrrl,

    DI of all sorts (central and nephrogenic) is characterized by increased/inappropriate fluid loss. Central DI is a subset in which the cause is a deficiency of vasopressin. Note the prefix "vaso." Vasopressin has two primary effects, the conservation of fluid via constriction of "pores" in the kidneys through which substances in the blood (including water) are removed from circulation. The second primary action of vasopressin is peripheral vaso-constriction. This particular effect of vasopressin (desmopressin) is similar to the primary effect sought from midrodine when treating POTS.

    I would also talk with your doctor about the simultaneous use of midodrine and desmopressin.

    You are absolutely correct in identifying the primary concern of a desmopressin over-dose (HYPERvolemia leading to encephalopathy, a potentially life threatening condition). For this reason, I would strongly recommend that you not increase your fluid intake while taking desmopressin and that you closely follow the recommended dose and schedule. Patients taking desmopressin are typically instructed to "only drink to thirst." However, this can be a challenge for a sub-set of patients. The area of the brain that produces vasopressin is also very close to the area of the brain referred to as the "thirst center." Widespread damage to this region leads to some patients with CDI also having an impaired thirst mechanism. In this rare case, DI can occur and patients won't recognize their hypovolemia. However, loss of appropriate vasopressin production combined with damage to the thirst mechanism is thought to be extremely rare and requires a very experienced endocrinologist as well as extensive daily testing and close patient/physician collaboration to treat properly.

    Lastly, unless your fluid loss/hypovolemia is severe, the first line of treatment is water (and water alone). Introducing either too much or too little desmopressin to the mix can set off a bit of a roller coaster ride of symptoms and the lack there of. If you are going to try desmopressin, I'd recommend working with a doctor who has experience with several patients who are on this drug.

    Best of Luck!

    @Sushi, Thanks for posting Rich's comments.
     
    NK17, MeSci, zzz and 2 others like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,601
    Likes:
    24,756
    USA
    @CBS Thank you for your detailed reply and I have decided against the Desmopressin at this time. After doing extensive research today and all the great info from you guys on PR (and from a great PR friend who sent me info but not in this thread!) I have decided that it is not the right med for me.

    I am having such great results from Midodrine and from drinking extra water and Pedialyte (and will be starting saline IV's) and feel like I am moving in the right direction. I wish my background & vocabulary were more scientific so I could respond to you with more accurate terminology. But I understood what you were saying re: the risk of hypervolemia and encephalopathy and don't want to add any extra risks.

    Drinking to thirst would not work for me b/c I rarely (at present) ever feel thirsty or hungry. I just eat and drink b/c I know I am supposed to but something is off in my body that identifies these signals. And Sushi, thank you for posting the comments from Rich as well. I wish he were still here so I could have had the chance to interact with him. :cry:
     
    Sidereal and MeSci like this.
  14. Revel

    Revel Senior Member

    Messages:
    408
    Likes:
    2,462
    @Gingergrrl, I don't have any experience with Desmopressin for POTS (although I did use it on my old dog who had Diabetes Insipidus o_O).

    I do, however, have issues with never feeling hungry/thirsty. I also struggled with the 'drink at least 8 glasses of water a day' suggestion from my POTS consultant. The more I drank, the less I was able to eat and I'm already very underweight.

    I have found it helpful to drink 2 glasses (500ml) of salted water or electrolytes first thing in the morning before I get up (it got easier as time went on). It improved my a.m. POTS symptoms and meant that I only had 6 glasses to get through for the rest of the day.

    *TMI alert* Because of CFS/POTS, I have GI issues including poor gut motility resulting in constipation. By drinking 500ml quickly first thing it seems to shock my guts into action and, well, problem solved!

    Aside from increased fluids/salt, I am currently taking Ivabradine. Not sure if it has been licensed for use in the US yet. I have low bp and couldn't tolerate beta blockers but am doing ok on Ivabradine, even though it can cause a lowering of bp in some patients. In fact, it's probably the only drug I've ever taken that has given me no negative side effects whatsoever.
     
    Gingergrrl likes this.
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,969
    Likes:
    12,815
    Cornwall, UK
    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.
     
    Last edited: Oct 18, 2014
    Gingergrrl and NK17 like this.
  16. Revel

    Revel Senior Member

    Messages:
    408
    Likes:
    2,462
    @MeSci, regarding the plain water recommendation, my consultant never specified what to drink. It was only by researching online that I found that no more than half of the fluid intake should be plain water. What can I say, NHS consultant ;).
     
    Gingergrrl, NK17 and MeSci like this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,969
    Likes:
    12,815
    Cornwall, UK
    I had one tell me essentially the opposite, due to the persistent belief amongst all my doctors that my polyuria is due to overconsumption of fluid, despite my providing them with meticulous fluid charts and telling them repeatedly that I did NOT overconsume fluid.

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

    :aghhh:

    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...? :lol:
    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...:rolleyes:
     
    Gingergrrl and Revel like this.
  18. Revel

    Revel Senior Member

    Messages:
    408
    Likes:
    2,462
    Good grief @MeSci! I'm surprised your consultant didn't offer you a prescription for mint humbugs :woot:!!
     
    MeSci likes this.
  19. CBS

    CBS Senior Member

    Messages:
    1,502
    Likes:
    847
    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").
     
    MeSci and Gingergrrl like this.
  20. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,601
    Likes:
    24,756
    USA
    @Revel I don't know why I rarely feel hungry or thirsty and thought I was the only one! I think it is b/c so often I am having shortness of breath and chest tightness that the last thing I can do is eat (which makes it worse.) Every morning now I drink Pedialyte mixed with water (it is too yucky plain) so I have had at least two cups before I even eat breakfast. I rarely eat anything before 11 am or noon.

    As far as Ivabradine, it is still not available in the US (not sure why?) but my new cardio mentioned it as something we may try in the future and can get from a Canadian pharmacy. I do well with a low dose of Atenolol and on the days I skip it (or forget to take it) my BP is the same as the days that I do take it. But if I skip it for too long, the tachycardia always comes back. Last week I had two mornings in a row with tachycardia as high as 164 bpm and then I really don't function that entire day.

    You are the second person on PR who told me they had no side effects from Ivabradine. Do you take it specifically for POTS or for any tachycardia? Do you also have shortness of breath or chest tightness and does it also help with that?
     
    Revel likes this.

See more popular forum discussions.

Share This Page