sleep craziness - awake 2 1/2 days out of last wk & less refreshed than ever

[Tammie]

what sort of side effects did u get from seroquel? I use it once maybe twice a week and the only side effect i ever get is abit of a hangover, but after not sleeping much for a few days its worth it. I use 100mg, but like everyone keeps saying, everbody reacts differently to meds, ive found it a life saver.

felt like I was on a tilt-a-whirl; vertigo was that bad, serious nausea, very screwed up vision, couldn't make my body work rt at all, knocked out for several days from the lowest dose possible, could not think straight at all, and I think there were some other problems with it too, but it has been quite awhile since I tried it so I am not remembering everything - I just remember it being really incredibly horrible

....and since then I have read about a lot of different problems it can cause, including very extreme weight gain that people cannot lose after stopping it, tardive dyskinesia (permanent), and neurolpetic synrdome (life threatetning), psychosis, metabolic syndrome, and even death (separate from neuroleptic syndrome)

 

[xchocoholic]

I didn't get the chance to read all of this but I can certainly relate ... Not sleeping is soooo hard on us. Even one nite without adequate sleep will keep me in a fog the next day. I'm sure that there's a medical explanation for this but I haven't researched it enough yet. I was looking into sleep cycles, neurotransmitters and hormones though since I know from experience that all of these play a role in our ability to sleep.

I found that what I ate gluten (this is my main neuro toxin, but it could be anything) played a role in my ability to sleep BUT so do my hormones. I just went through this again....

To fix this though, I've found that taking 300 mg of suntheanine (for nocturnal myoclonus) and 300 mg of 5HTP (Natural Factors brand only) takes care of this. Normally 50 - 100 mg of each will assure that I get a good nites sleep but when my hormones are raging or when I've been exposed to a large amount of gluten, I HAVE to have more. I'm still trying to understand how all this works.

Taking Melatonin left me feeling hung over the next day so I stopped taking it ... hope you get this figured out soon ... X

 

[judderwocky]

seroquel should knock you out no matter what.... its pretty hefty duty

 

[BEG]

Tammie . . . have you tried Remeron? It's another nighttime heavy hitter.

 

[Tammie]

seroquel should knock you out no matter what.... its pretty hefty duty

it did, but the severe side effects were not worth it and the knock out effect lasted for days - so absolutely no functioning whatseoever, and feeling incredibly worse than I do if I don't sleeo at all

 

[Tammie]

Tammie . . . have you tried Remeron? It's another nighttime heavy hitter.

it is one of the VERY few I have not tried, but considering that it works on epinephrine (which my body cannot handle at all) and serotonin (every drug I have tried with this has made me seriously suicidal) and considering that remeron also seems to knock people out longer than just at night and it also makes people gain a ton of weight, I don't think it is worth trying at this point

thanks for the suggestion, though......I am desperate, but at the same time, once I have tried several similar drugs and had really bad results with all of them I don't think it's worth continuing to try every drug in the same type of category (though there are some categories where I have pretty much tried every drug in them).....plus these days any time I have a bad reaction, some of the resultant worsening of my overall CFS symptoms does not go away even after stopping taking whatever caused the problems (just like anytime I crash badly anymore, I do not recover to the previous level of functioning)

 

[*GG*]

Not sure if I missed in the Thread, but I take it you have tried Trazadone? How about Xyrem, this is heavy duty and expensive I believe, but the FDA is looking to approve in for FM. FYI

Have you looked at the co-cure site for a good Dr?

I see a "specialist" just for my sleep and I take Mitrazapine (Remeron) which has been working for me for the last 1/2 year or so? I was on Trazadone before but that was losing it's efficacy.

 

[alex3619]

Hi Tammie,

I almost didn't reply to this thread because there are major differences between you and me. I have never (with one exception) slept for days at a time. That exception was an ultra-low dose of an SSRI which knocked me out for four days, and it took another three days to really wake up.

I have major circadian disruption. In its middle stage it resembles what you describe. I haven't taken the drug route (mostly) but I have come to terms with it, but i don't know if my answer fits you at all. I used to fight the problem: try to stay awake, or go to sleep, or what ever I though I should do. Once I stopped fighting it, but let my need to sleep or be awake come naturally, I felt much better. Sure, I can't plan to go shopping just because I need to as I might have to sleep, but my sleep quality and waking functionality are much improved. Whenever I fought my sleep cycle, I was much worse, especially my orthostatic intolerance and brain fog.

While I typically don't sleep for days at a time (not much beyond 14 hours in fact) I used to have periods where I was awake for more than three days at a time, then slept for 16 hours. So there are some similarities between us in a strange way.

The only real problem I have with not fighting my sleep pattern is what to do when my body is energised and my mind is crashing, or vice versa. Usually I go with whatever is worse, but not always.

I just thought of one more exception: deep sleep verging on coma when I had measles encephalitis when I was a child. I was out of it for a week.

I hope this is of some help to you.

Bye
Alex

it is one of the VERY few I have not tried, but considering that it works on epinephrine (which my body cannot handle at all) and serotonin (every drug I have tried with this has made me seriously suicidal) and considering that remeron also seems to knock people out longer than just at night and it also makes people gain a ton of weight, I don't think it is worth trying at this point

 

[Tammie]

Not sure if I missed in the Thread, but I take it you have tried Trazadone? How about Xyrem, this is heavy duty and expensive I believe, but the FDA is looking to approve in for FM. FYI

Have you looked at the co-cure site for a good Dr?

I see a "specialist" just for my sleep and I take Mitrazapine (Remeron) which has been working for me for the last 1/2 year or so? I was on Trazadone before but that was losing it's efficacy.

I have tried trazadone.....in small doses it made me more tired but did not putmt to sleep, in higher doses it knwcked me out, but left me feeling really hung over and super tired....so overall still worse than not actually sleeping at all

have not tried xryem ....it's about the only type of med I have't tried, but considering my current finances don't even cover basic living expsnses, I cannot afford this

 

[Tammie]

Hi Tammie,

I almost didn't reply to this thread because there are major differences between you and me. I have never (with one exception) slept for days at a time. That exception was an ultra-low dose of an SSRI which knocked me out for four days, and it took another three days to really wake up.

I have major circadian disruption. In its middle stage it resembles what you describe. I haven't taken the drug route (mostly) but I have come to terms with it, but i don't know if my answer fits you at all. I used to fight the problem: try to stay awake, or go to sleep, or what ever I though I should do. Once I stopped fighting it, but let my need to sleep or be awake come naturally, I felt much better. Sure, I can't plan to go shopping just because I need to as I might have to sleep, but my sleep quality and waking functionality are much improved. Whenever I fought my sleep cycle, I was much worse, especially my orthostatic intolerance and brain fog.

While I typically don't sleep for days at a time (not much beyond 14 hours in fact) I used to have periods where I was awake for more than three days at a time, then slept for 16 hours. So there are some similarities between us in a strange way.

The only real problem I have with not fighting my sleep pattern is what to do when my body is energised and my mind is crashing, or vice versa. Usually I go with whatever is worse, but not always.

I just thought of one more exception: deep sleep verging on coma when I had measles encephalitis when I was a child. I was out of it for a week.

I hope this is of some help to you.

Bye
Alex

Alex,

thanks for your response....it actually deos help and I have kind of started to just go with whatever my body decides to do.....but I can only do that so long, bc it really does not seem to give me any truly functioning hrs at all during the day....some awake hrs, but none where I can manage to get groceries, go to the dr, etc....I may need to give it a bit more time though

honeslty I don't really like the drug route, and I have also tried all sorts of supplements, light box, etc, etc, but I tried the drugs in desperation.....given that I pretty much respond terribly to nearly every med out there, I really don't like trying them, though