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Anyone else dread bedtime?

Messages
211
I can have a tachycardia thing that happens when I lie down, identified through 24-hr Holter monitoring as supra ventricular tachycardias (SVTs). It sounds very similar to what you're describing. It's uncomfortable enough that it would make it very difficult to go to sleep.

In my case, I found that taking a sufficient amount of CoQ10 almost entirely prevents it. When my ME/CFS first started about 17 years ago, I only needed 100mg per day. (My CoQ10 blood level measured at 1/2 lowest normal, but whether that might be a direct cause of the SVTs is another matter.)

Now I need 300mg (divided doses work best for me; too much CoQ10 is uncomfortably "wiring").

We're all so individual, so who knows whether this might work for someone else.
Funny you say this, my integrative medicine doctor just told me to get ubiquinone.

@Misfit Toy remeron didnt work for me either. But in my case i lost weight! I found my tsh is higher after remeron, from 2.950 to 4.4... Dont know if it was remeron though, but i did loose my morning erections and libido after it. Also my sleep got worse after remeron and it perpetuated the skin crawling, arm,legs, finger and neck twitches that amytriptiline introduced. Thank you pharma drugs.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
did it lower your prolactin? which brand did you take? i'm looking for such a supplemnet...
I don't know about prolactin. I used Raw Pituitary from iherb. I was desperate because I no longer tolerated my low dose Klonopin. I also used an old-fashioned antihistamine at times, but didn't want to continue with that. I'd had excellent results with hypothalamus and adrenal glandulars, so decided that adding the 3rd element of the HPA axis was worth trying. It turned out to be really effective. I no longer needed it after a major detox event, and beginning Neuroprotek for mast cell issues. I'm not sure which of these helped most, but I was able to drop the pituitary. My cortisol levels never matched the distress and sleep problems I had.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
i take folininc acid too. But i take in the beginning of the day, you think this helps you sleep?I take seeking health brand.

Definitely helps me sleep. Works best if I hold it under my tongue for awhile. Still working on dosage levels, but if it doesn't work (for me), then I take a little more and I'm able to sleep.

Agree with @ahmo -- adrenal/hypothalamus/pituitary glandulars help as well.
 
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nandixon

Senior Member
Messages
1,092
@xptriado -

Yes, my 24h urinary cortisol is very normal, am cortisol is also normal and has been tested many times by my endocrinologist. Angiotensin 2 was recently tested and was normal, as was angiotensinogen. Argenine vasopressin is very low as is aldosterone (both undetectable), so my endocrinologist has me on florinef.
My vasopressin (ADH) and aldosterone are both undetectable as well, and I also use Florinef.

Interestingly, when I tried desmopressin I found that it worked great for the nighttime frequent urination problem I've had ever since my ME/CFS developed. But unfortunately it makes my next day fatigue/exhaustion worse, so it's not worth using in my case. Not sure if this is a reflection of the body wanting ADH to be low for some reason, or the difference between the synthetic analogue desmopressin versus the natural ADH.

How do you do with vitamin D supplements? Calcitriol is a very potent negative regulator of the Renin Angiotensin Aldosterone System (RAAS), i.e., all else being equal, the higher that calcitriol is the lower renin and aldosterone will be.

Have you had your calcitriol measured? Mine runs just above the highest normal level, and supplementing more than about 400-600 iu vitamin D3 per day makes my fatigue/exhaustion much worse. (In my case, this is a pathological problem and completely unrelated to dietary or supplemented calcium, magnesium, phosphorus, vitamins A or K, etc.)

Obviously, since calcitriol has so many different actions though the ubiquitous VDR (and associated nuclear receptors) it seems impossible to say exactly why vitamin D makes a subset of us feel worse (in the presence of normal calcium blood levels), and the down-regulation of the RAAS is almost certainly only just one (possibly minor) aspect.
 
Messages
211
@nandixon I didn't test aldosterone or calcitriol. I just tested D3 25OH and am waiting for the results. I suspect it's low. I tried supplementing D3, couldn't really find any difference.

@ahmo I think I will get the pituitary extract. Does it contain hormones? I think your cortisol showed fine because you didnt do salivary cortisol. I know lots of people testing just fine in blood and urine and then salivary is totally out of whack.

@dannybex I get back to sleep in the mornings with Adenosylcobalamin sublingual. funny....
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
@xptriado -

Yes, my 24h urinary cortisol is very normal, am cortisol is also normal and has been tested many times by my endocrinologist. Angiotensin 2 was recently tested and was normal, as was angiotensinogen. Argenine vasopressin is very low as is aldosterone (both undetectable), so my endocrinologist has me on florinef.

Echocardiograms (both resting and stress) for me are generally interpreted as normal by the cardiologists, although sort of in the "normal variant" category. I don't ever show diastolic dysfunction, arrhythmia, abnormal wall motion, clinically significant valve leakage, etc. The only abnormality that I get is a hyperdynamic left ventricle (my EF is over 80%) and mild left ventricular concentric remodeling. Essentially, it means my heart is pumping very hard, and the muscle cells have grown in response to this. My suspicion is that it is due to either abnormalities in fluid volume (which I do have, it was tested - probably resulting from the abnormalities in ADH and aldosterone) or vasodilation and venous pooling, which are thought to underlie many POTS cases. Serum serotonin, which is a vasopressor, is low.


I've done 2 salivary cortisol test and on the same day did a 24 hour urine cortisol.

Both salivary cortisol test (ELISA) were 8am = low, 1pm = high(just barely), 5pm = high and 10pm high.

Both 24 hour urine cortisol (LC-MS/MS) were "0"

My endo doesn't even know how to order a the test for aldosterone!
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
think I will get the pituitary extract. Does it contain hormones? I think your cortisol showed fine because you didnt do salivary cortisol. I know lots of people testing just fine in blood and urine and then salivary is totally out of whack.
I did salivary cortisol, repeatedly, both single and 4x/day. I'd have to search my results, but nothing was alarming in them.

Add: Having just looked back at results, the only thing that stood out was DHEA:Cortisol ratio. The rest were pretty much mid range. This was during a period when my sleep was very poor, very disrupted, never refreshing. wired but tired was the norm.

There are no added hormones. Check here
 
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Eeyore

Senior Member
Messages
595
Getting tests, if you are in the US, isn't too hard. You just go to the Quest Diagnostics website and choose the part that is for physicians. There is a test center. You can look up what tests are available there. You'll have to choose the lab for your state, as the test codes and the tests vary. You want to write down the actual test name and test code for your state.

For example, if you lived in NY state and wanted to test aldosterone, you'd find this:
"Aldosterone, LC/MS/MS" with test code 17181X. You want the test code, not the CPT code.

There are quest diagnostics draw centers all over the USA. You can find one on their website.

So if your physician wants to test aldosterone, you can give them this info, they can write a prescription for the test, and you just bring it to quest and they'll draw it for you and send the results to your physician.

Sometimes, when I've wanted to explore something less conventional, and need to ask a physician for a test requisition, I find it is helpful if I do the legwork for them and figure out exactly what the test is. The physician may feel the test is entirely reasonable and interesting to run, but may not be aware of it. There are so many tests available now through quest and other labs that no doctor could be expected to know them all.

I do, however, find it surprising that an endocrinologist cannot figure out how to test aldosterone... In theory, all they have to do is write "aldosterone" on a prescription pad, give it to you, and you bring it to a lab that tests it. The code isn't really necessary but for more obscure tests it's helpful since w/o it, the phlebotomist must look up what the physician ordered and guess which test code to enter, and sometimes you get the wrong test (e.g. I've gotten the wrong vitamin D test sometimes, 25-OH D3 vs 1,25-OH D3 - very different tests used for very different purposes. Having codes also really speeds things up when getting your blood drawn.

All of this, of course, assumes your physician is willing to order the test. My point is not to tell you what tests to order - only that if you and your physician want to order a test for something, but the physician is unsure of how to do so, you can facilitate this process fairly easily.

You all probably know already that as ME patients we cannot just trust our docs to know what to do about everything. Unfortunately, they aren't trained for it in med school and their peers generally don't even believe it exists - so if you have a physician who is sufficiently understanding and willing to try to help you, cut them a break and do what you can to help them help you. The most important qualities in a good physician, imo, are open-mindedness, curiosity, critical thinking, compassion, and trust in the patient. I've had a lot of physicians look me in the eye and say "I don't know" - that's totally fine with me. I like that they are confident enough to admit it. No one knows everything. If they are willing to help you figure it out, that's huge right there.

Remember that docs don't have it as great as they used to - high patient load, low compensation, extreme pressure to see more patients per hour, endless paperwork created by the insurance companies, litigation or threat thereof (often frivolous), etc. If we want docs to try to see things from our point of view, then we should also be willing to try to see it from theirs.

Some docs just suck all around unfortunately, but many are really good, intelligent people who want to help if given the chance to do so. If the doc sucks, drop him/her and move on and find a better one. That's not the same as the doc not agreeing with you though - I don't think getting a yes-man (or woman) would be beneficial to our care. Ideally, the physician and patient form a relationship built on trust and work as a team to improve the patient's health. The good docs, and the good patients, understand this dynamic.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
@ggingues -Remeron put a lot of weight on me. I think you said that you put weight on. I wonder if that could be the reason. That's the major side effect of Remeron. It never helped me to sleep.

No it's more about diet, I did lose a lot weight, and it has slowly come back on :) Wish that was it, but again, not sure I would quit Remeron just because of that! I don't feel as dead as I used to when getting up in the mornings, which is very good for me!

GG
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Yup I hate bedtime too....the minute I lay down my heart feels like it is pounding out of my chest...I am aware of every single beat no matter what I do.

I take Klonopin (.025mg) and sometimes I fall asleep quickly and sometimes not so I don't really know if it actually helps.

Then I wake up feeling like I am on a water bed and my body is moving up and down like on waves. Or I feel just plain weird. I usually seem to get enough sleep but it is a very bad quality I assume.

I have tried tons of stuff over a 10 year period and nothing really works or helps me feel refreshed in the morning. I always feel terrible when I first get up and that lasts a good hour.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@soxfan -can you take a heart med? I am on atenolol and it calms down my overactive heart. I know about waking up in am....feel like a dog dying.
 
Messages
211
Yup I hate bedtime too....the minute I lay down my heart feels like it is pounding out of my chest...I am aware of every single beat no matter what I do.

I take Klonopin (.025mg) and sometimes I fall asleep quickly and sometimes not so I don't really know if it actually helps.

Then I wake up feeling like I am on a water bed and my body is moving up and down like on waves. Or I feel just plain weird. I usually seem to get enough sleep but it is a very bad quality I assume.

I have tried tons of stuff over a 10 year period and nothing really works or helps me feel refreshed in the morning. I always feel terrible when I first get up and that lasts a good hour.

I have a suggestion.
Take.clonazepam not at bedtime like doctors say. Take it aroun 6-8pm, to help lower cortisol.

Then, get something better for sleep architecture, like trazodone and take a very low dosage, like 12,5-25mg 2 hours before bedtime. It should block all the 5ht2a receptors at that dosage and some of the alpha adrenergic.1

When i take things at bedtime i either have sides or it messes up sleep more. I guess this has to do with peak of absorptipn of thd drug.

Now, trazodone doesnt make me sleep through the night, i always wake up at the end of the half life. So im thinking next tjme i will.try it with grapfruit juice to prolong its half life.not sure that will work well because then i will have the peak at a diff time.

Anyway, have u tried something like memantine? Or maybe escitalopram?

I will.try baclofen for sleep, i think it shoild help me get a refreshing sleep.

Btw, what helps me in the am is to eat a snack and take dibencozide sublingual. I notmally fall back asleep within max 1hour. Just dont exageratd on it or sleep will be light.

That being said, my sleep is still a mess
 

Eeyore

Senior Member
Messages
595
I too always get a racing heart as soon as I lie down. It goes away if I stand up usually - so I always get it when I go to sleep.

I have some propranolol I can take when it's unusually bothersome, but I don't take it too often.

Trazodone gave me crazy psychomotor agitation - couldn't stop moving my legs. That was at 12.5 mg qhs (1/4 of the smallest pill). It helped some things though, and I might revisit.

Trazodone has a mixed effect on ht2a receptors btw - its major metabolite mCPP is a 2a agonist, and more potent than trazodone is as an antagonist. However, it's found in lower concentrations, so it may be a wash. HT-2A agonism is associated with valvulopathy, and studies have looked for this and not found it in trazodone (so all the evidence I've seen and the conventional medical view is that it is safe from that perspective). Overall, trazodone does work well for many ME patients. There's an article you can google online where different ME docs talk about what their drug of choice for sleep is, and I believe trazodone was recommended by Dr. Derek Enlander in NYC (mine was just from my non-ME specialist PCP). My point is just that this is an approach that at least 1 ME specialist has found beneficial in his patients.

To be fair, I have a fair amount of movement disorder at baseline. I can never keep my legs still. I don't know why. Maybe RLS, but it's better at night lying down, not worse. I've had it as long as I can remember, even as a small child, long before ME onset, so it may be an unrelated quirk.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Misfit- I wore a holter monitor a few years back for 24 hours and my heart rate was totally normal...What I feel is like my heart is pounding like a pendulum in my chest...not fast. I also have a thingy I can put on my finger to check heart beats and it is always around 55-62 when laying in bed. So it is not fast but I perceive it as a pounding heart. I also have the problem of counting the beats and I can't stop doing it...I tried meditation tapes and breathing but it is so overpowering I can't stop.

People keep telling me it is anxiety but that is not true because I feel it anytime I am not moving...I can be sitting watching tv and it will feel like my heart is pounding out of my chest..

@ xptriado-I have tried Trazodone many times..even in the liquid form but it didn't work at all. I either had to take too much and end up with a terrible hangover in order to sleep or it just didn't work. I can't even begin to tell you all the sleep meds I have tried....I was on Lunesta for 6 years and I never felt refreshed or else I would only sleep off and on and that made me feel even worse in the mornings.

I will try taking the Klonopin earlier and not when I get into bed...I did try Seraphos for a while but that did nothing either. I thought maybe it was high cortisol that was making me feel weird during the night...
 

Eeyore

Senior Member
Messages
595
Yes @soxfan, same as what I had. Pounding heart, but not true tachycardia. You may have a hyperdynamic left ventricle - I do - which contracts very forcefully.

It's not anxiety. I know what anxiety feels like, and this is not anxiety, it's postural. I can be totally relaxed mentally but still have it.

Sleep meds help with sleep but not with pounding heart.

Whenever I tried to explain it to docs they just shrugged.

I did discover what, for me at least, was an effective treatment... but nothing that's clinically validated.
 
Messages
211
@Eeyore mCpp is what i think is waking me up after the half life of trazodone. Though, only 10% of trazodone gets converted to it. I was getting movements from everything, and i assume to have plmd. I have chosen trazodone exactly because i theorized it would not give me rls or plmd. That being said, i still monitored my sleep with sleep as android and i did hear movements during sleep, every 5minutes or so, even if i dont wake up. But from all the things i tried this was the best. I tried around 5 or 6 ads, 3 benzos and z drug. Even passiflora gave me plmd like symptoms.

@soxfan if i take 50+mg i get hangover too. You need to find something to mix with clonazepam because it decreases slow wave sleep , thats why u feel tired. Clonazepam is very good at making sleep continuous for me, and deep, but not restful. What other things have you tried?
 
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