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Why you should re-visit supplements.

maryb

iherb code TAK122
Messages
3,602
Location
UK
When I first became ill I had sleep problems like so many, then I found Melatonin, and boy did it help. I got better and then had a relapse which is where I am 8yrs on. I tried the Melatonin again but the second time around it didn't do anything, I tried again and again - so another failed supplement and I turned to Zopiclone.

Recently been waking up at 4am and staying awake until 8/9am and then drifting on and off until 10.30/11am. Not a good pattern to get into.
So the other morning at 3.30am I took a dropperful of Melatonin in desperation, I went straight back to sleep and got up at 10am, a slight improvement, this morning the same and I was up at 9.30, an acceptable time for me.
So just to say please re-visit supplements you've tried before that haven't worked , our body is changing all the time and they may just help you second time around.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I had a toxic reaction to the B's, Metagenics vessel care, sublingual mb12, adb12, p5p, etc , I took for awhile and when I tried them again I got the same reaction. I'm assuming it's because I have leaky gut.

Changing how we take them can help too. I started chewing up some of my supplements and medications because I absorb certain chemicals better that way. So far melatonin, 5htp, vicodin (hardly ever use), klonopin (chewable wafer), children's liquid benadryl, ?

I need less so it's cheaper too. -$$$. ☺

Tc .. x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
@xchocoholic
have you become addicted to klonopin, that's my fear in trying it.

I weaned myself off of it about 6 years ago and tried theanine instead for several years. It was touted as an alternative.

I later realized this meant if Klonopin was being used to treat anxiety. My real problem sleeping is nocturnal myoclonus so I wasn't sleeping as well.

I jerk myself awake when entering a certain sleep pattern. They used to say it was rem but I think they've changed that. I had a sleep study that showed this in 1990 ?

I take appr .125 mg at night. More if I'm jerking still. Since I keep the dose low I'm not too concerned.

I HAVE to treat the myoclonus so I don't have a choice. I had a 2 hour seizure a couple of years ago and can't risk that happening again. My lungs kept forgetting how to breath. I had to force them. I have other smaller seizures / movement disorders too tho and K helped.

Tc .. x
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Glad to hear its only a small dose, I may be going on a long holiday soon, I have to find some alternatives to Zopiclone.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I need melatonin, 5htp and klonopin for sleep. Mel makes me sleepy. K for myoclonus. And I just forgot what 5htp does. Lol. It helps my mood tho.

Natural factors has a combo supplement but their doses weren't right for me. I use their 5htp exclusively tho. The others I tried didn't work.

I can't digest the outer layer of the 5htp anymore so you may want to watch that. I found whole ones in my stool. I bite off what I want.

Tc .. x
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@xchocoholic
have you become addicted to klonopin, that's my fear in trying it.

I would say we are addicted to meds as i think it paints a picture of us getting high from it and enjoying it.
I would say we are reliant on it.

I wonder if there is a way to test someone with cfs/me who has never used benzos and has bad sleeping problems and see if there is an issue with our production of gaba or our receptors are up the creek.

I know some have pushed doses high to overcome worsening sleep issues but there is alot of us who havent pushed doses higher and it almost seems like we are really just on like a gaba replacement type therapy.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Glad to hear its only a small dose, I may be going on a long holiday soon, I have to find some alternatives to Zopiclone.

why you need a replacement for zopiclone, finding a doctor or moving somewhere they dont prescribe it? I would be lost without my zopiclone??
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@heapsreal
because where I'm going there's a time difference of 8hrs:(
I don't want to increase my Zopiclone which I would have to do if I tried to sleep outside of my very fragile sleep window You're a lot younger than me, I worry about the effect on memory and other stuff :(....
I'm sensitive to the 1hr change in autumn and spring, so really don't know how I'm going to cope...if at all....
But we do cope don't we - toughies us lot:)

@xchocoholic
I'm going to try the theanine before I go.....do you know if my amino acids urine test would show if any of these would help, as in low levels??
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I'm not sure. It seems easier just to try a little then increase as tolerated.

Theanine isn't a normal human amino acid. I'm not sure how to test for mel or 5htp. Test validity may be questionable.

The type of theanine recommended is l theanine. It's been awhile so I can't remember the brandname but it says Sun theanine on the bottle.

On the sleep change, my regime allows me to change zones easier. I was smart and took a little Klonopin at the airport the last time I travelled to reduce my anxiety. Even with wheelchair assistance it's overwhelming for me.

Eating different foods with questionable gf standards is my biggest problem. I did well the last time tho. Kow.

Tc .. x
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@xchocoholic
have you become addicted to klonopin, that's my fear in trying it.

Mary for myself klonopin was like a life saver for me. It didnt make a difference to my sleep issues but really helped the nightmarish intense constant anxiety I was getting (which was related to situational too but it was horribly relentless) at that point of time with the ME and the neuro overstimulation stuff. I was on it for a while (cant remember now for how long 6mths-18mths) and was able to just completely stop taking it when my symptoms shifted and the anxiety symptom went away.

I only took it low dose but found that was plenty and I never had to increase it due to built up tollerance (that would be the point I would of stopped taking it if it lost its effectiveness at the low dose I was taking). I think that is really where some go wrong, increasing dose if a tollerance has happened to which it has stopped working so well.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@taniaaust1
so glad to hear you were able to just stop it, I can't just stop the Zopiclone even at 3.5 - 5mg which is just over half a tablet. Full dose is 7.5mg.... I've never been tempted to up it, I know that's not the way to go.

I can't remember what your dose of klonopin was? were you on any other meds at the time, maybe that would affect whether someone could just stop it. I've just read so many horror stories about it but my doc has asked me 3 times to change over to it from Zop.