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

[Tammie]

My sleep has long been messed up, but lately it is getting super crazy.......I was typically spending 10 - 14 hours in bed, but sleeping extremely lightly - waking up every 45 minutes or so to use the bathroom, having tons of nightmares, never waking refreshed at all, etc....also was never able to go to sleep before 3 AM and often much later

then I was having a night and day and night where I slept at least 30 hours straight - still not super deep sleep, but somewhat more so than other nights....that was happening about once every 6 weeks, then it changed to once a month, and then for a while it was once every other week.....then I even wound up having a time where I slept 58 hours (yes 58!) straight....really not fun; very disorienting and I wake up feeling extra sick after sleep like that

well, now things have become even less predictable.....sometimes I sleep a lot, sometimes not much at all, sometimes I can't fall asleep until really late, other times I fall asleep early and wake up super early....while it is truly wonderful to actually be awake in the morning again on occasion, it usually does not result in functioning in the morning; just not being asleep....and having my schedule this unpredictable makes it impossible to plan anything....was hard enough before, but at least then I knew that sometime around 6 or 7 PM I would have a few functional hours (if it was a "good" day)....now I am having almost no functional hours and no way of predicting at all when they might be

and DURING THE PAST WEEK I WAS ONLY AWAKE 2 1/2 days total.......this REALLY stinks!!

I am so tired and dizzy and just generally feeling so horrible and even my so-called functioning is barely that.....can't think straight, can't see straight, etc, etc.....life is just this crazy sleep thing, then struggle to the grocery store, then crazy sleep thing, then struggle to do laundry (& then get sicker from the residue from other people's detergent....spending hours with my face pressed upon a pillow case with fragrance from other people's detergent has been making me stop breathing fairly often), then more crazy sleep, then struggle to the store again, etc.....

& yes I have tried pretty much everything out there to try to fix the sleep thing.....nothing helps

 

[Sallysblooms]

I have been like that a lot of the time. Until my doctor told me about melatonin and Meta Rest. That changed everything. I don't have to take it very often now. Just once in a while, VERY LITTLE gives me a good nights sleep and seems to get my melatonin working better.

 

[serenity]

you have my sympathy Tammie, i am working on my sleep issues as well.

 

[Tammie]

I have been like that a lot of the time. Until my doctor told me about melatonin and Meta Rest. That changed everything. I don't have to take it very often now. Just once in a while, VERY LITTLE gives me a good nights sleep and seems to get my melatonin working better.

I've tried all the ingredients in Meta Rest......I actually react very badly to melatonin, and I read (after trying it) that it can make OI worse which was one of the things it did in my case.....really glad that it helps you, though - I wouldn't wish this sleep insanity on anyone

 

[Tammie]

you have my sympathy Tammie, i am working on my sleep issues as well.

I hope that you find some relief soon.....this stuff is really no fun

 

[Tammie]

Including meds? I'm surprised any sleep doc would leave you in that state without some kind of assistance.

yep, even meds......there are almost no meds of any kind (excpet asthma meds, the pill: I also have endometriosis, and LDN) that I can take w/o really bad reactions......but due to desperation I have tried all sorts of sleep meds (& in various doses.....I gave them a good chance to work).....they either don't work or they knock me out for way too long and leave me even more groggy than I am if I don't sleep at all.....and they give me other side effects, too regardless of if they put me to sleep or not

have also tried muscle relaxants, antianxiety meds, neurontin, etc, etc, etc (lots of meds that are not specifically for sleep, but that are often prescribed off lable for sleep)

I seriously function significantly worse on any of the meds I have tried than I do w/o sleep

 

[Tammie]

I have tried a ton of meds, natural/herbal supplements, using a light box, good "sleep hygiene", massage (when I could get it covered by insurance) etc, etc......seriously everything I (& a few different docs) have come up with

my body just refuses to get anything approaching normal sleep/wake patterns and never ever feels rested

 

[heapsreal]

yep, even meds......there are almost no meds of any kind (excpet asthma meds, the pill: I also have endometriosis, and LDN) that I can take w/o really bad reactions......but due to desperation I have tried all sorts of sleep meds (& in various doses.....I gave them a good chance to work).....they either don't work or they knock me out for way too long and leave me even more groggy than I am if I don't sleep at all.....and they give me other side effects, too regardless of if they put me to sleep or not

have also tried muscle relaxants, antianxiety meds, neurontin, etc, etc, etc (lots of meds that are not specifically for sleep, but that are often prescribed off lable for sleep)

I seriously function significantly worse on any of the meds I have tried than I do w/o sleep

Have you tried seroquel???????

 

[serenity]

thanks Tammie, it is really awful. i do so much better when i sleep.
i've hardly tried any sleep meds & the docs just seem to have given up on me. i dont' get it. i'm on Lunesta, Sonota, Doxepin (which i am weaning off of) & Lexapro (also about to wean off.) the Doxepin & / or Lexapro cause me hair loss & sexual dysfunction. i am not willing to deal with those side effects. Melatonin makes my nightmares worse. the GP has just given me Wellbutrin, which i have tried before unsuccessfully but i don't know what else to do.
i dont' get in to see my sleep doc again until Aug.

 

[heapsreal]

things like lexapro and wellbutrin could be causing insomnia or making it worse. Maybe should look at the older style meds like valium or tamazepam, even antihistamines like phenergan can be a great help and u dont need a prescription.

 

[serenity]

that was for me Heapsreal? Lexapro was helping with my sleep for sure, just causing hair loss & sexual dysfunction. i do take Xanax occasionally but dont' want to get addicted, i have a past history of addiction. i've tried antihistamines, they either don't help or make me sick.
thanks for the suggestions.

 

[Tammie]

Have you tried seroquel???????

yep - it was probably the worst one I tried and if I had known now as much about it as I did then I would not have even tried it (even as desperate as I am)

 

[Tammie]

thanks Tammie, it is really awful. i do so much better when i sleep.
i've hardly tried any sleep meds & the docs just seem to have given up on me. i dont' get it. i'm on Lunesta, Sonota, Doxepin (which i am weaning off of) & Lexapro (also about to wean off.) the Doxepin & / or Lexapro cause me hair loss & sexual dysfunction. i am not willing to deal with those side effects. Melatonin makes my nightmares worse. the GP has just given me Wellbutrin, which i have tried before unsuccessfully but i don't know what else to do.
i dont' get in to see my sleep doc again until Aug.

Wellbutrin for sleep???? or to try to help you have energy when you are awake? that one made me manic and I do not have bipolar (there has actually been consdieration of including medication casued bipolar type III bc this type of reaction is so common)

 

[Tammie]

things like lexapro and wellbutrin could be causing insomnia or making it worse. Maybe should look at the older style meds like valium or tamazepam, even antihistamines like phenergan can be a great help and u dont need a prescription.

I think this was intended for serenity, but it reminded me that i forgot about one when I said seroquel was about the worst for me......klonopin was as bad, if not worse....have tried other benzos, too........benzos do not work for me at all either, nor do antihistamines

 

[heapsreal]

yep - it was probably the worst one I tried and if I had known now as much about it as I did then I would not have even tried it (even as desperate as I am)

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.

 

[taniaaust1]

Im sorry to hear what trouble you are having tammy.. at my worst i was only awake for about half an hr for day and could sleep days straight. (lucky i didnt starve to death, i was falling asleep again before i could even finish a meal).

The thought of seroquel makes me cringe too as that drug affects me badly in which i then loose sooo much time as if it's enough to put me to sleep, it then makes me way over sleep and makes my sleeping even worst. Then when i finally can get up.. the grogginess and very unwell seedy feeling from it (like a very bad hangover) is horrible.

Im lucky as i seem to do ok with benzo drugs in very very small dosage (eg i can take a quarter of the very smallest dosage tablet of xanax if i cant get to sleep.. a half of the very lowest dosage will give me a headache, so i need to take even less).

i havent got any ideas of what to suggest other then the maybe see if another can do that grocery shopping for you eg some shops one can place an order and get the things delivered. Your sleep is probably so bad as in your current state you are probably way over doing things just to survive...creating a vicious circle.

 

[caledonia]

First off - have you had a sleep study? Have you ruled out sleep apnea, acid reflux and restless legs? I had no idea my legs were kicking all night long waking me up several times an hour. Instead of taking the medicine they offered, I talked with my naturopath and increased magnesium greatly. Problem solved.

The next problem was why I got the sleep study in the first place. I was waking several nights a week with my heart racing and pounding. I didn't have an episode the night of the sleep study, but they ruled out apnea, so the other possible diagnosis was acid reflux (even though I had no symptoms during the day, and no burning symptoms).

Now I sleep on a wedge pillow and make sure I wait 45 minutes after eating before I lay down to sleep. It's much improved, though not a total cure.

Next my sleep cycle was moving rapidly forward, about an hour a day, so that I was totally reversed once a month. I found out I had an allergy to corn which buzzed me awake when I desperately needed sleep (tired but wired!). I eliminated corn from my diet, including from one of my meds. The problem has improved greatly, though not a total cure. Still moving forward about 15 minutes a day.

Then I started on Rich Vank's methylation protocol taking the methyl forms of folic acid and B12. I highly recommend this to anyone with MCS, which it sounds like you have. My MCS is greatly improved. I also feel like I'm sleeping deeper and my sleep cycle has stopped moving forward. In fact, it might even be moving backwards. The jury is still out on that, but I'm keeping track as usual with my sleep chart. My acid reflux has also lessened in intensity. Still not cured, but improved another notch.

I'm still taking some other sleep supplements recommended by my naturopath, mainly melatonin, 5 htp, but I almost feel like I don't need them anymore. Once I started the protocol I was able to cut back on magnesium by 1/3.

ps. if you decide to start Rich's protocol, start with teeny tiny amounts (1/256 of one pill) as it will cause detox symptoms as the toxins start to come out.

 

[Tammie]

Im sorry to hear what trouble you are having tammy.. at my worst i was only awake for about half an hr for day and could sleep days straight. (lucky i didnt starve to death, i was falling asleep again before i could even finish a meal).

The thought of seroquel makes me cringe too as that drug affects me badly in which i then loose sooo much time as if it's enough to put me to sleep, it then makes me way over sleep and makes my sleeping even worst. Then when i finally can get up.. the grogginess and very unwell seedy feeling from it (like a very bad hangover) is horrible.

Im lucky as i seem to do ok with benzo drugs in very very small dosage (eg i can take a quarter of the very smallest dosage tablet of xanax if i cant get to sleep.. a half of the very lowest dosage will give me a headache, so i need to take even less).

i havent got any ideas of what to suggest other then the maybe see if another can do that grocery shopping for you eg some shops one can place an order and get the things delivered. Your sleep is probably so bad as in your current state you are probably way over doing things just to survive...creating a vicious circle.

I'm glad that benzos help you.
The store thing would help, but the stores around here won't do that (I've checked), things like Peapod are too expensive and also don't carry the very few foods that I am currenlty able to eat and keep down, and a couple of friends have offered to help, but then they don't understand that I am not up for visiting with them afterwards, so it kind of defeats the purpose.....you are very rt, though about the vicous cycle - I no longer have ANY energy envelope at all

 

[Tammie]

I'm so sorry Tammie but I have nearly the same problem. My sleep is non refreshing, I keep turning around in my bed the whole time and often stay awake for 1-2 hours. Melatonin and all sleep medications just make it worse. I think the problem lies somewhere else, maybe hormones or the brain.

sorry you are having a hard time with sleep, too

my hormones are defintiely out of whack, so that cuold certainly play a role, but unfortuantely trying to replace the hormones that I am low in has resulted in feeling much worse overall.....well with one exception - I am on the pill bc I also have endometriosis, and I feel substantially worse if I don't take it; however, even being on it, they could not find any estrogen in my last bllod test and I am low in progestin (both of whihc are in the pill).....weird, huh?

 

[Tammie]

First off - have you had a sleep study? Have you ruled out sleep apnea, acid reflux and restless legs? I had no idea my legs were kicking all night long waking me up several times an hour. Instead of taking the medicine they offered, I talked with my naturopath and increased magnesium greatly. Problem solved.

The next problem was why I got the sleep study in the first place. I was waking several nights a week with my heart racing and pounding. I didn't have an episode the night of the sleep study, but they ruled out apnea, so the other possible diagnosis was acid reflux (even though I had no symptoms during the day, and no burning symptoms).

Now I sleep on a wedge pillow and make sure I wait 45 minutes after eating before I lay down to sleep. It's much improved, though not a total cure.

Next my sleep cycle was moving rapidly forward, about an hour a day, so that I was totally reversed once a month. I found out I had an allergy to corn which buzzed me awake when I desperately needed sleep (tired but wired!). I eliminated corn from my diet, including from one of my meds. The problem has improved greatly, though not a total cure. Still moving forward about 15 minutes a day.

Then I started on Rich Vank's methylation protocol taking the methyl forms of folic acid and B12. I highly recommend this to anyone with MCS, which it sounds like you have. My MCS is greatly improved. I also feel like I'm sleeping deeper and my sleep cycle has stopped moving forward. In fact, it might even be moving backwards. The jury is still out on that, but I'm keeping track as usual with my sleep chart. My acid reflux has also lessened in intensity. Still not cured, but improved another notch.

I'm still taking some other sleep supplements recommended by my naturopath, mainly melatonin, 5 htp, but I almost feel like I don't need them anymore. Once I started the protocol I was able to cut back on magnesium by 1/3.

ps. if you decide to start Rich's protocol, start with teeny tiny amounts (1/256 of one pill) as it will cause detox symptoms as the toxins start to come out.

I spent three nights in the hospital a few yrs back with electrodes hooked up to my brain and a video camera watching everything, and a bunch of other tests were run then....it wasn't exactly a sleep specific study, but they were definitely looking at that, in addition to other things.......it has been awhile, though, so it is entirely possible that something new is going on; however, I absolutely cannot fall asleep any more if I am not in my own bed with earplugs in, a fan running, complete darkness, temperature control, etc, etc, etc......and up until the last month or so I was falling asleep so late, even if I could have somehow managed to get past all those issues, the study would have been done before my body was deciding to sleep.....so I am not really sure that they would be able to learn anything from a typical study

I do know that I don't have sleep apnea, though, and I have tried pretty much every possible treatment other than the machine they use for that (inc raising the head of my bed - can't sleep that way either....I do have reflux, though), so at this point I am not sure that a study would make any difference even if they did find something...also not sure that medicare would cover it

the allergy issue is most definitely a possibility bc I am allergic to almost everything and I also have severe MCS; however, at this point I have stopped eating any foods that casue me a problem and there are so few foods left if any of them are casuing the sleep issue, I wouldn't be able to eliminate them, too and still have anything at all left to eat

it is definitely a possibility that something in my apt is causing an issue with sleep, but I ahve been trying to find an affordable place to move for the last 4 yrs with no luck, so I am kind of stuck here for now

anyway, thanks for your response.....I saw that you responded to my post on pro health, too, but I figured I would just write back on one place