Melatonin For Pots

[Guest Alex]

I've tried melatonin in order to try to reset my circadian rhythm (I have a hard time falling asleep before 2-3 AM but I sleep for 8 to 9 hours a night, so most days I wake up around noon - not exactly productive) and in my case it never really worked. I only took 3 mg for 3 days, then I increased the amount to 6 mg for one day and then I stopped taking it altogether because my standing BP was getting lower and lower, and it was on the low side to even begin with. Also as a compensatory mechanism I guess my standing HR was getting higher. I was taking florinef back then, drinking lots of fluids and aiming for a relatively high daily salt intake.

Later on I came upon these articles:

http://jp.physoc.org/content/551/3/1043.full (more scientific version)

http://www.eurekalert.org/pub_releases/2003-09/ps-ssm091503.php (layman version)

If my interpretation of the articles above is correct, they suggest that melatonin is not a good idea for someone like me as it lowers one's BP, particularly upon standing.

Today I came across this study from Vandy indicating that "Oral melatonin produced a modest decrease in standing tachycardia in POTS. Further research is needed to determine the effects of regular night-time use of this medication in POTS."

https://medschool.vanderbilt.edu/student-research/files/student-research/Emphasis%20Program%20Forum%20VIII%202013.pdf#page=111

(you'll have to scroll down to page 111 or look for MELATONIN SUPPRESSES TACHYCARDIA IN POSTURAL TACHYCARDIA SYNDROME (POTS): A RANDOMIZED, CROSSOVER TRIAL)

What is your experience with this supplement? Could it be helpful only for those with high standing norepi levels (hyperPOTS)? The Vandy study mentions the fact that exogenous melatonin has been shown to significantly decrease standing plasma norepinephrine levels in healthy women.

Alex

[RichGotsPots]

Hey Alex,

I got Melatonin for my ex gf to help her sleep and it worked like a charm. So I got it in 1mg dropper form for myself. i got to sleep around 7am and wake up 3pm. It is awful especially in the colder months, I see no sunlight.

I have been too chicken to try it since I have orthostatic Hypotension and read a pots study that said it lowered BP.

Rich

[Guest Hanice]

I used it for sometime (with pots) with no negative effects. I haven't tried it lately though since I can sleep better now.

[kayjay]

I find it helpful but I don't walk around after taking it. I take melatonin just before bed. I have noticed an improvement in my sleep, but I don't notice a blood pressure effect in the morning.

Presumably the effects are short-lived?

Thanks for sharing this information.

[Guest Alex]

Rich,

in my case it was the opposite - I took the melatonin first, experienced the low BP then I found the studies

Kayjay,

I know the effects are supposed to wear off fast, yet in my case there was a clear correlation between my melatonin intake the night before and the low blood pressure the next morning/afternoon. I thought it was a coincidence but the problem persisted and then things came back to normal 2 days after my last pill. Moreover, the evening I increased my dose from 3 to 6 was followed by a day with even lower BP readings.

Alex

[kayjay]

Rich,

in my case it was the opposite - I took the melatonin first, experienced the low BP then I found the studies

Kayjay,

I know the effects are supposed to wear off fast, yet in my case there was a clear correlation between my melatonin intake the night before and the low blood pressure the next morning/afternoon. I thought it was a coincidence but the problem persisted and then things came back to normal 2 days after my last pill. Moreover, the evening I increased my dose from 3 to 6 was followed by a day with even lower BP readings.

Alex

It makes sense to me. I've had the same experience with Epsom salts. I wonder how many of us are effected by melatonin? It also makes me wonder if having Hyper makes a difference.

Hmm- a little lab rat named Kayjay may conduct a one subject experiment. It's the weekend so I'll stop taking it and report back to you on any morning Bp changes. I was thinking of stopping anyway because I hate taking "stuff".

[Guest Alex]

Kayjay,

that's what I've been trying to figure out - is being "hyper" making a difference? That seems to be the idea behind the study from Vandy.

Please don't experiment just because of me posting this. I agree with the taking "stuff" part though. In my case the melatonin was recommended by one of my doctors, the same one who later said I should stop taking it because of my "unexpected" (his words) reaction to it. Oh well, one more medicine bottle to add to the growing collection

Epsom salts baths don't lower my BP, but they sure relax me. Maybe I'm not adding enough salt into the tub

Hanice,

glad to hear you can sleep better now.

Alex

[looneymom]

Hi Alex

Tyler used this before he was ever diagnosed with POTS. He was taking 5 mg but it only helped for a few months. After he was diagnosed with POTS, he tried using it again but it had no effect. The cardiologist does not want him taking it either because he said it could lower his blood pressure at night. Don't need a new symptom.

I have taken 1mg of melatonin myself and feel sleepy about an hour later. The Epson salt does the same thing for me. I put two cups in the bath water on stormy days. My college day running injuries tend to bring on muscle aches and pain on stormy days,

Rachel

[Guest Alex]

Thanks for your input Rachel.

[thegron]

As the others have alluded to, melatonin can cause orthostatic hypotension in normal people. There is another drug (Rosarem) that is similar to melatonin. It should (in theory) be safer for POTS patients but I can't guarantee that.

Good luck.

[Guest Alex]

Thanks for the info Thegron.

Well, I guess different normal people have different reactions as well. My mom tired melatonin and while it hasn't helped her sleep, it had no effect on her BP (she doesn't have POTS or any other medical conditions). My experience was quite different.

I know about Rozerem, but that's a prescription med, while melatonin is natural and OTC. Also, I may be wrong, but isn't it one of those so called z-drugs? (similar to benzodiazepines?)

Alex

Edited October 5, 2013 by Alex

[looneymom]

Hi Alex,

I know you have tried many different medications. Did you ever try the Clonidine? My son could fall asleep with it but not stay asleep. He would wake up in pain. Do you experience a lot of pain or have a form of neuropathy? I'm just wondering if the extended release clonidine would get you back to a normal sleep cycle. Just a thought but I know you are fond of the natural route. Have you tired taking calcium and vitamin D and magnesium before bedtime? Tried that with Tyler before the clonidine but it had no effect.

Rachel

[Psalm 23]

Hi Alex,

Back in 2011 I was told by Mayo Neuro to discontinue the Elavil I had been taking for sleep and pain. I was told Elavil could make my pots symptoms worse and I should try melatonin for sleep so I first tried 6mg which did nothing then 10 mg which did nothing. I tried different brands and a timed release version. I was desperate for sleep and I did not want to take a prescription sleep aid. In the end I gave up on melatonin. I have a very labile b/p so I'm not sure whether it had an effect on my b/p or not. I'm glad some people benefit from taking it.

Janet

[Guest Alex]

Rachel,

to the best of my knowledge, clonidine is an antihypertensive drug. I doubt it would be a good idea for me - my normal BP is on the low side.

I do take vit D and magnesium supplements, and I'm getting enough calcium from my food (too much calcium is actually a bad thing for the cardiovascular system from what I know). The vit D should be taken in the morning though, not at night as it is inversely related to melatonin. When taken at night vit D is known to disrupt one's sleep. Magnesium, on the other hand should help if taken before bedtime. I actually credit magnesium for helping me sleep. My sleep used to be interrupted and not refreshing at all, but not anymore.

Janet,

thank you for your input.

Now back to my original dilemma. I was actually wondering if any of you have found melatonin to help your POTS, specifically your tachycardia (see the Vandy study I mentioned above). So let me rephrase my question:

Those of you who are currently taking melatonin or who have taken melatonin in the past; has it helped your tachycardia? Is it possible that melatonin is only suppressing the tachy in those with high standing norepi levels (hyperPOTS)?

Also, according to the same study, the patients received 3 mg of melatonin in the morning though (kind of counterintuitive if you're asking me).

Alex

[KareBear]

I have tried taking melatonin during the day/morning and it knocked me on my butt for the entire day. Literally couldn't function until after 5pm or later. I wasn't a newbie to using melatonin either, I had used it many times to help me try and sleep at night and the dosage I used was 3 mg. So my personal experience is that it makes my POTS symptoms worse.

[Guest Alex]

Thanks for your input Kara,

I guess our experiences are somewhat similar only I took melatonin at bedtime only

[Psalm 23]

I guess I couldn't say whether or not taking melatonin had a positive effect on controlling my tachycardia or not since I had already been started on mestinon which has really restrained my tachycardia and clonidine which feels as if it has significantly reduced my NE levels. Unfortunately I and it would appear many others continue to be very symptomatic in spite of a restrained heart rate and more controlled NE levels. In the end I'm not sure how helpful it is to suppress what seems like a compensatory mechanism.

Janet

[Guest Alex]

Once again thanks for your input Janet. The recently published study from Vandy made me curious.

[davecom]

I guess I couldn't say whether or not taking melatonin had a positive effect on controlling my tachycardia or not since I had already been started on mestinon which has really restrained my tachycardia and clonidine which feels as if it has significantly reduced my NE levels. Unfortunately I and it would appear many others continue to be very symptomatic in spite of a restrained heart rate and more controlled NE levels. In the end I'm not sure how helpful it is to suppress what seems like a compensatory mechanism.

Janet

Hi Janet,

In regards to your thought on restraining a compensatory mechanism - although I can only speak to my own personal experience, I agree with you. I think it depends on your underlying cause... yet again... but if your tachycardia is in fact a normal response, and not hyper-pots, hormonal, etc or an over-compensation then you may feel even worse not having it. I certainly did. Although it feels awful to suddenly have your heart rate double, it may feel even worse to not have enough blood going to your head. Perhaps for some people there is a balance.

[Guest Alex]

http://www.vanderbilt.edu/AnS/psychology/health_psychology/melatonin.htm

this is an interesting page from Vandy about melatonin

[Psalm 23]

Alex,

Thank you once again for all of the interesting thought provoking links you post. Maybe at some later point I will give melatonin another try. Perhaps when I have to go off of all meds for retesting at Mayo.

Hi dave,

Yes. It is all such a delicate balance. For myself I am struggling with what would appear to be an increase in pooling and cerebral hypoperfusion. I think my heart rate got too low so I dcd my propranalol a few weeks back and feel somewhat better for it. I agree. Being tachy is not as distressing as having reduced cerebral perfusion. I am awaiting reevaluation myself. Trying to achieve some sort of livable balance is very difficult with so many variables involved and then of course the ever changing nature of this condition doesn't help.

Janet