Vasopressin - Bingo

I would not be surprised if this was the underlying problem in most of us. Regardless of the cause of the beginning of our fatigue, most of us probably have a problem with orthostatic intolerance/hypotension from this. http://www.ncbi.nlm.nih.gov/pubmed/8475696
Gonna try out some therapy (low dose) and see if I benefit. I do benefit when upping my florinef dose temporarily. In the end my fatigue is a fluid dynamic problem. Those of us like me taking hydrocortisone and multiple hormones may see temporary improvement because virtually every hormone has the power to increase blood pressure and whatnot. We shall see.

More recently you might find this interesting:

Hormonal alterations in adolescent chronic fatigue syndrome. Wyller et al.

The cohort criteria were extremely lose but they still found a difference in ADH levels between the patient group and the control group. The ADH data was not normally distributed which required a the use of non-parametric data analysis. This could have been because the subject group was not homogenous and/or because in many labs ADH measurement has no lower level that is outside of the reference range (eg. ref range: 0 to 4.7 pg/ml - some labs have a ref range of 1 to 5 pg/ml). What isn't normal is a large group of subjects, most with values at or near zero.

May be true for many, but I think there are a lot like me that suffer CFS but not OI.

pretty old research there. More recent work is looking at other volume regulatory hormones and molecules.

I took DDAVP for about a year without much difference. I decided the risk of hyponatremia wasn't worth continuing it, but I hope you get improvements!!

Some recent work is on abnormal dopamine sodium regulation in the kidney. Looks promising.

I tried it and it made me worse. Lol. Was a fun thought though. Ramakentesh can you link me to that research ?

When I take something to up my blood pressure, I feel a million times better for a short while. The problem is, it doesn't stay that way. And I can't always take something to do that. I find they either strip you of potassium or they strip your glands both adrenals and thyroid. But for the short while I can take something, once it kicks in, I'm a totally different person. When I don't take something, I am non functional. I almost passed out today just trying to rearrange two shelves that are shorter than me. I just wanted to move a few of my books from one shelf to the other, triggered a severe POTS lightheaded attack to the point of seriously almost passing out. And yet, a few days ago, I took something to up my blood pressure and I was almost running down the hall here. Night and day difference. But I have yet to find a safe, effective treatment that lasts. And I'd have to say, probably seventy five to eighty percent of my completely disabling symptoms come directly from POTS. I think the vasopresin hormone levels jump wildly out of control.

I just tried a small dose of Vassopressin(0.05) and I feel extremely dizzy ... blood pressure dropped after taking this.

How long was it after taking the vasopressin/desmopressin that your BP dropped??

Hi CBS, about 30 minutes after taking Vasopressin.

Hi Sara,

Thanks for the response. If I am reading your post correctly, you are taking vasopressin rather than the synthetic replacement, desmopressin (I honestly was not aware that vasopressin was available). This might be important because the synthetic desmopressin has more of an effect upon fluid conservation in the kidneys and less of a vasoconstrictive effect upon the vessels that does naturally produced vasopressin. Does the vasopressin minimize fluid loss for you? If so, how fast?

Increased fluid retention and/or increased peripheral vasoconstriction (both properties of desmopressin and vasopressin) ought to elevate BP. The pharmaceutical action of even a small amount of desmopressin/vasopressin should last for at least a couple hours (2-4 hour half life with significant variation both within and amongst patients; but 30 minutes?).

Not really sure that I can think of a mechanism that would account for such a relatively quick drop in BP. Again, it might help to know if vasopressin actually restricts fluid loss within 30 minutes. The route by which you take vasopressin (injection, inhaler, rhinal or oral/pill) can have significant effects on the amount of time it takes to have an effect on fluid loss.

I am taking the synthetic one, Desmopressin. I did a google search on desmopressin side effects and found out that it can lower the blood pressure for the first 1-2 hours. Unfortunately I do not have the link to the page now. I am going to try it a few more times because I feel it is helping me with frequent urination, and urine output volume.

I am now fairly certain this is the cause of my chronic fatigue...I really have no other symptoms that would suggest any kind of chronic activated infection.
I have been struggling for years trying to understand why I still felt the same way and had the exact same symptoms that basically never change (in degree or severity)..

The more I read about POTS etc...the more I am convinced this is my main problem. I can't wait to talk to my doctor next week although I am pretty disappointed that this has never been mentioned to me in the 8 years I have been sick..and yes I did see a very well known CFS specialist and researcher who did not mention this or even ask....go figure.

Hi Sara,

I did a search and found a few reports of hypotension in response to desmopressin. There was a 1995 article that specifically addresses hypotension in some patients when the drug is intravenously infused (http://www.annals.org/content/103/6_Part_1/962.1.short) and there is a site where patients can report drug side effects. Of 888 patients reporting side effects of desmopressin, 28 (out of 888 - 3.15%), reported hypotension as a side effect (http://www.ehealthme.com/ds/desmopressin acetate/hypotension). Again, not sure that I describe a mechanism here. Good luck.

Hi Soxfan,

POTS is very common in ME/CFS patients. Recognition of diabetes inspidus as a cause of POTS by a doctor is very rare. Diagnosis of my diabetes insipidus has been huge (life saving) for me. At the time of diagnosis, my DI was severe (losing SEVEN GALLONS of fluid a day). Subtle or episodic DI is very hard to diagnose and even when it is suspected, treatment is quite controversial. I guess what I'm saying is that it is not surprising your docs haven't considered DI (although many will recognize POTS - not always caused by DI or treated with desmopressin). Increased fluid intake, increased sodium and florinef are more typically prescribed (these can all be effective in the right cases). Good luck.

Hi CBS, thanks for your answer.

Hi Soxfan, hormones have a huge impact on my fatigue and dizziness.A very small dose of DHEA helps a lot . I am now taking 1/4 mg Arimidex(removes estrogen) and I can hardly keep my eyes open.

I am fairly certain I could possibly have POTS now because of Lyme. I was successfully treated back in 2007-2008 and felt about 85 percent for a year. Then I started having different symptoms..meaning the fatigue felt different and the neuropathy pain changed. I felt then that whatever I started with back in 2004 was no longer the problem. This has been going on since 2009 and I have slowly gone backwards. I am having alot of trouble working...and exercising which weren't such huge problems back then.

Buying the heart monitor watch has certainly been an eye opener for me and seeing how my rate spikes during the day has truly shocked me. Of course it is always possible I still have some type of active infection but I don't think so....my symptoms have been so consistant for the past 3-4 years with no change.

I am so hoping the doctor agrees with me or figures out a way to test me because I am getting kind of depressed about all this...thanks

Many POTs patients have volume regulation difficulties. This does not mean they have overt Diabetes insipidus.

Really? since the cause of POTS in any case is prettymuch still being debated, this statement seems strange.