Your Experiences With Melatonin

[flowntheloop]

I have been hearing from multiple sources that melatonin may be helpful in the treatment of POTS, so I figured I would give it one last chance. I had not tried it in nearly 15 years--and my last experience with it was during a time in which my ANS was going haywire after getting viral bronchitis. That experience was not a good one, but I figured something might have changed since then.

I took 1mg of melatonin around 45 minutes before bed last night. I quickly began to feel groggy, unable to keep my eyes open. I felt really heavy, but I would not say that I felt comfortable in any way. I noted on my fitbit that my heart rate had dropped around 10bpm from my usual. Lights went out at 845pm, and I started my usual breathing meditation. I was confused and scatterbrained during the entire meditation--so I just decided to just try to get to sleep. Unfortunately, the following 5 hours were more like a waking nightmare. I felt like I was either going to float away or sink into my mattress (not in a good way), and it was quite difficult to breathe. It felt like my breaths were very shallow and short. It was a very similar sensation as when I've had my BP bottom out whilst taking muscle relaxers (I cannot take them for this reason). I was in a wakeful hallucination, and it was quite terrifying. I finally got to sleep somewhere around 1 am, but I started awake with a tachycardia episode and breathlessness at 2 am. AN ABSOLUTELY MISERABLE EXPERIENCE. Note: This was almost the exact same experience I had 15 years prior to this. I'm wondering if all of this could be due to my low blood pressure?

Does anyone else here have a similar experience with melatonin?

[RecipeForDisaster]

I don’t have a problem with this one, and I took 10mg extended release last night. Taking 1mg isn’t always enough, as in, I don’t feel a difference. That sounds scary. I have had a kind of similar experience with tramadol... but my usual very low BP episodes don’t sound like yours.

[flowntheloop]

1 minute ago, RecipeForDisaster said:

I don’t have a problem with this one, and I took 10mg extended release last night. Taking 1mg isn’t always enough, as in, I don’t feel a difference. That sounds scary. I have had a kind of similar experience with tramadol... but my usual very low BP episodes don’t sound like yours.

Thanks for pitching in, RFD. I was given Tramadol 15 years ago as well (it was a very desperate situation with my sleep back then), and I don't remember it being particularly helpful for me.  I don't remember it causing this sort of reaction though. Ambien, on the other hand, was absolutely terrifying for me.

Why do I have to be so dang sensitive to medications?? The only thing that has ever helped me with sleep without causing adverse effects is lorazepam (which I still take when needed; obviously not last night due to taking melatonin). I guess I'm just a little disappointed that this wasn't something that could help me.

[RecipeForDisaster]

I sleep like absolute garbage because I feel so crappy. The most helpful thing I can do is get IV fluids. Metoprolol has been helpful, too. 
 

To a lesser extent, I have had some benefit from theanine, valerian root, and transdermal vagal stimulation, all without any negative effects. 5-HTP helped but gave me very vivid dreams - not worth it. 
 

I have never tried a prescription sleep aid. I have mixed feelings about trying them. Tramadol made me so weak I couldn’t even talk. It stinks because I have few options for pain.

 

I completely know where you’re coming from - in my case I don’t think any of my doctors really care that I get so little sleep.

[flowntheloop]

It is honestly so sad that most doctors do not take more of our symptoms seriously. 😢 If I smacked doctors every time they shrugged or told me "It's just part of being on the hypermobility spectrum or fibromyalgia", I don't think I would have an arm left. 😜 I'm really hoping that 2021 brings me a better medical team (with an understanding of what is going on in my body).

I've tried valerian, and I'm not a fan (makes my skin feel like it's on fire). I'm not sure about the others you listed.

I totally understand. I'm also hesitant to try medications due to side effects, but lorazepam literally saved my life back in 2006. (Note: I cannot take other benzodiazepenes due to rebound panic reactions!). I had not slept (or had REM/deep sleep) in over a month, and I was dangerously underweight due to eating issues. My GP had tried every antidepressant/anxiety medicine at her disposal, and I even checked myself into a psych ward because I wanted help so badly (I checked myself out the next morning due to poor/abusive treatment). I was so weak and exhausted that my husband had to carry me, and even my bodily functions were failing (I was wearing an adult diaper because I lost bladder control). The last ER doctor we saw decided to administer lorazepam, and I was able to sleep and eat again within the hour. I took low dose (maintenance dose) lorazepam for 8 years off and on. It wasn't something I ever had an issue "needing", and I even stopped getting it filled for several years. This year, I started experiencing very similar symptoms (along with a lot of new ones that have developed in the past few years) to 2006. I'm now struggling to eat and sleep again, and I once again had dramatic weight loss (my GI doctor thinks it may be a motility issue). I also want to mention that I'm autistic and get sensory overload, so health problems can be pure h*** for me---which only exacerbates my symptoms further. I have been in weekly therapy and have had a strict meditation practice since March of this year, but sometimes I'm just unable to cope with the burden of chronic pain and illness. I made the decision to see a psychiatrist again for sleep help just this last month, and I'm so relieved to have that emergency backup if I really need it. It isn't something I take daily or even weekly, and it is one medication that I KNOW doesn't make my symptoms worse! It is extremely useful when I have tachycardia episodes in the middle of the night and think I'm dying. LOL

[JaneEyre9]

I took melatonin once, and that was it for me! I ended up in the ER. Afterward,  I remember reading it can lower BP, so that is likely part of why I couldn't tolerate it.

Sleep problems are so difficult!  I had some luck with wearing blue-light blocking glasses before bed. They are pretty cheap on Amazon. Some of the other things that helped me heal in general are in my signature below.

[Ginger_]

melatonin is an absolute no go for me.  i tried it due to having caffeine and wanting to sleep through the night so i would be refreshed for the next day which would be long and busy.  I woke up in the morning having a terrible pots flare, my heart rate was high and wouldnt come down with standing and the neuropathy in my hands and feet came around, which only happens on very bad days.  

[MomtoGiuliana]

Interesting.  I have taken it a few times (small dose) and each time I take it I feel a little dizzy and foggy.  I have not checked my bp on these occasions.  But I wonder if it may reduce blood flow to the brain or exacerbate blood pooling?  No idea.  It may help me a bit with sleep but the side effects are not worth it to me.