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up all night...hate insomnia..hate the pain..hate these illness

heapsreal

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10,089
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australia (brisbane)
hurting...I already had the sleep study done 2 years ago but never followed up. I only slept 2.5 hours for the study so they told me it wasn't any good. It did say in the short time I slept that no apnea or RLS was indicated. I don't know if the doctor will want me to have another one or not. I will if my insurance will pay for it and they will have to give me something to really knock me out.
You should only be taking 3mg of the melantonin because you can actually take too much of the stuff. It is a hormone which our bodies are suppose to make naturally and if you already have enough then you don't want to overload on it.

I was tested a year ago through saliva and it was low at night but the doctor had me only taking 1.5mg. I was breaking the 3mg in half. It didn't really help so I stopped taking it. I have no idea why the stores sell such high doses of it when not necessary. I work in a pharmacy and we also sell a 5mg.
If I were you I would at least cut the 10mg in half.
I will let you know what the doctor says on Friday....hope he can help

They said 2.5hrs wasnt enough? My sleep study i had to sleep periods one last 12 mins and the other 20min and they said it was enough. I really think these sleep study places have no set standards and they certainly didnt help me with insomnia only interested in apnea so they could sell equipment for it. Be nice if they could treat insomnia properly??

cheers!!!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
You should only be taking 3mg of the melantonin because you can actually take too much of the stuff. It is a hormone which our bodies are suppose to make naturally and if you already have enough then you don't want to overload on it.

I was tested a year ago through saliva and it was low at night but the doctor had me only taking 1.5mg. I was breaking the 3mg in half. It didn't really help so I stopped taking it. I have no idea why the stores sell such high doses of it when not necessary. I work in a pharmacy and we also sell a 5mg.
If I were you I would at least cut the 10mg in half.
I will let you know what the doctor says on Friday....hope he can help

As soxfan said.. melatonin is actually an actual hormone you are taking.

It is a supplement/drug which Ive found that more isnt necessarily any better. I find the lowest dose which works for me.. the effects of it dont seem to increase by taking more. Some thou may find a higher dose for them works better.

1mg of it used to help me.. but nowdays I need 3mg. (A 10mg dose for me wont do anything more then a 3 mg dose does... I tried to OD on melatonin one time and taking a whole bottle of it didnt do anything more for my sleep then my little dose does!).

I suggest to experiement with the dose and find out at what amount it starts to help for you. (many people only do need a few mg). (In Australia one needs to go to a compounding chemist if one needs a dose of over 2mg). Melatonin can also make POTS worst too if you have it..so it isnt probably good to take more then you need.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
heapsreal- I am pretty certain if I don't have apnea the doctor won't help me. I agree that they are interested in the people who have this condition and not someone like me who has unrefreshing and disturbed sleep patterns. It will only cost me 35.00 to see what he has to say so it is worth the time.
The sleep study said it could not be used as a diagnostic study because of my short period of sleep but then it goes on to say that I didn't have sleep apnea or RLS.

I will come back to this thread and let you all know what he had to say...it should be interesting.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
"Some" sleep centers nowdays do look for more then things like sleep apnea and RLS and look at the actual stages of sleep and how long one is in them etc.

Best to check to make sure a sleep centre does also look for these other issues before going to one. I think in some places one can be wired up and sent home and have the equipment monitoring brain wave states, while sleeping in ones own environment which is useful to those who sleep at abnormal times or have a lot of trouble sleeping so dont get tested well in a centre.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Thanks for the info GG....

The sleep study report which they gave me did break down the stages of sleep I had in percents. I had 34 % stage one, 43% stage two, 20% non-rem stage 3 and 2% Rem. I had a sleep efficiency of 30.9% where 80% or higher is normal. It said the study was non-diagnostic because I only slept 145 minutes.
I have an appt. this afternoon with the doctor....If I could have the study done at home that would be great and much more efficient...
 

heapsreal

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Location
australia (brisbane)
Thanks for the info GG....

The sleep study report which they gave me did break down the stages of sleep I had in percents. I had 34 % stage one, 43% stage two, 20% non-rem stage 3 and 2% Rem. I had a sleep efficiency of 30.9% where 80% or higher is normal. It said the study was non-diagnostic because I only slept 145 minutes.
I have an appt. this afternoon with the doctor....If I could have the study done at home that would be great and much more efficient...

My sleep study a couple yrs ago broke down the different stages of sleep, i had a lack of deep stage sleep but they didnt have any answers. Info i have googled on this always seems to point to a diagnosis of depression when sleep quality is poor, so when they dont know something they diagnose depression, mm? heard that before too. They gave me a print out of sleep hygene crap etc and didnt really want to know me after that. Its apart of medicine that really needs some improving.

cheers!!!
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I am fairly certain that is what will happen to me today...since I have no apnea or RLS he won't be able to help out. I am on my way to appt. and will post when I get home. I was told I was depressed 8 years ago when I suddenly became sick...Like I said it will only cost me 35.00 to hear what he has to say.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Had my appt. with the sleep doctor...He spent at least an hour with me going over my medical history etc.. I really thought he was going to push the sleep hygiene thing on me or the depression factor but surprisenly he didn't. He actually said he feels my sleep problems are neurological from an infection. He also said the sleep study was valid and he explained it to me and he also had other info on my sleep study which I didn't have.

Anyway to make this short..he has given me a prescription for Arecpt (think that is how it is spelled). He said there have been studies where it increases the REM sleep. He wants me to give the neurontin a real try first because I do have the neuropathy pain all night. So I will try and get up to 300mg on the neurontin first.
He didn't have the greatest personality but I was happy with how the appt. turned out.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Had my appt. with the sleep doctor...He spent at least an hour with me going over my medical history etc.. I really thought he was going to push the sleep hygiene thing on me or the depression factor but surprisenly he didn't. He actually said he feels my sleep problems are neurological from an infection. He also said the sleep study was valid and he explained it to me and he also had other info on my sleep study which I didn't have.

Anyway to make this short..he has given me a prescription for Arecpt (think that is how it is spelled). He said there have been studies where it increases the REM sleep. He wants me to give the neurontin a real try first because I do have the neuropathy pain all night. So I will try and get up to 300mg on the neurontin first.
He didn't have the greatest personality but I was happy with how the appt. turned out.

Sounds like the doc is open minded. The med aricept works in a similar way to another drug i cant recall at moment, but its said to help with growth hormone secretion which we normally get from stage 4 deep sleep. Keep us updated on how u go with aricept.

cheers!!!
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Sounds like the doc is open minded. The med aricept works in a similar way to another drug i cant recall at moment, but its said to help with growth hormone secretion which we normally get from stage 4 deep sleep. Keep us updated on how u go with aricept.

cheers!!!

mestinon is the med i was thinking of that increases growth hormone
 

hurtingallthetimet

Senior Member
Messages
612
hello sox sounds like the doctor at least spend time explaining the test, glad the insurance covered the majority for you...thats one of the hardest things i think is for the doctor to spend time..i love my current doctor but sometimes it seems they are over booked and only spend a few mintues,,

i hope the medication works for you i hadnt heard of the arecept before...i hope you sleep well.. take care
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Glad that doctor turned out to be fairly knowledgable and better then many sleep specialists. I do think there has been much change in that field in the past 10 years.
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Glad that doctor turned out to be fairly knowledgable and better then many sleep specialists. I do think there has been much change in that field in the past 10 years.

baclofen, lyrica, gabapentin, xyrem, mirtazapine are some meds that can help improve deeper stages of sleep. I have found baclofen and lyrica not very sedating on their own but when used with other traditional sleep meds, they improve my sleep quality.

Generally its thought that benzo meds reduce our deep sleep but i have read a study where the benzo mogadon increased growth hormone levels which usually occurrs in stage 4 sleep. I also believe that any sleep is better then no sleep, so if a benzo reduces deep sleep, i still think is alot better then no sleep. I suppose is just improving quantity, not quality i guess.

Anyone else know of other meds shown to increase deep stages of sleep or growth hormone???

cheers!!!
 

PNR2008

Senior Member
Messages
613
Location
OH USA
Aricept is an Altzheimer drug. I thought it was tried on CFS patients and was unsuccessful but maybe for sleep it's OK. I could have used it when I was watching my Dad who was taking it for the disease. I never got any sleep then. I just wanted to add that as a rule I can sleep and have an arsenal of things to take when I run into problems but there are periods when nothing, and I mean nothing works. I somehow get wired or past the point of sleeping and can't do a thing about it. This has happened on the days you talked about Hurt and it went on and on. Call it weather change, sunspots, UFO's, intestinal parasites mating in my colon. It just seems to go away after an agonizing number of nights. Most doctors say treating sleep problems and the havoc they create are the easiest part of treating CFS suffers so get help if it continues. Good Luck.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Heapsreal- My lyme doctor gave me gabitril to try a few years back. He said it was suppose to help with deep sleep. It only made me extremely drowsy and then hungover for the next 24 hours. I gave the sleep doctor a list of meds I had already tried and he said I basically have tried everything they recommend.
There are times when nothing will help...usually on those nights I can fall asleep for maybe 2 hours and then up the rest of the night.

I did ask about ativan and klonopin for sleep and he told me they do prevent the deep sleep. I was also prescribed those for sleep and they do give me a nights sleep but I always feel horrible the next day.

The sleep problems for me have been the worse symptom of CFS. I have no idea why nothing helps me feel at least a little refreshed in the morning. I am going to try the neurontin for a week and then if I don't feel better then I will go on to the Aricept. At this point I have nothing to lose by trying something I haven't before.

I go back to the doctor in a month....
 

john66

Senior Member
Messages
159
I stayed at a friends house last weekend. I packed up two ambien and one fell in the sink-gone, woke up at two and my friend gave me some lorezepam-what a completely useless drug. Felt like crap the next day. I tried xyrem recently and it made my bp spike incredibly high. I guess I am sodium intolerant. I took 4.5 g two times. The first night I got about four hours total and the second about six. I would have kept up with it if bp had not gone so high. Sleep remains one of the things that is sooo frustrating.

Soxfan-glad you got an doc who seems open minded and trying to help, in my experience nuerontin alone is not going to make me sleep, it helps me stay asleep longer with ambein or lunesta. Agreed that you have to keep trying until you get some sleep. J
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Heapsreal- My lyme doctor gave me gabitril to try a few years back. He said it was suppose to help with deep sleep. It only made me extremely drowsy and then hungover for the next 24 hours.

I gave the sleep doctor a list of meds I had already tried and he said I basically have tried everything they recommend.
QUOTE]

I have a Dr for you to see if you want to make sure you have exhausted the meds you can try for sleep. He helped me!

GG

PS Just PM me if I don't respond on this thread.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
GG..I am currently trying the neurontin for my neuropathy and sleep issues. It is helping my pain on just 200mg and I am going up to 300mg tonight. I am sleeping much better these past few days so I am going to see how this goes first. Thanks for the offer...I will PM you if I want to see the doctor you recommend. Thanks!
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I am on a whole host of medications and have been for a while but none seemed to help with the sleep. More recently I have been taking half a pill at night of Sominex. It's something we can get here in the UK across the counter at the pharmacy.

I am finding it gets me into sleep mode and then I am able to remain asleep - generally speaking - for 3-4 hours. This of course gets interrupted by fitting and/or vivid dreams but it seems to have helped.

Much better now that the alternative 1-2 hours if I was 'lucky'. Of course I still 'wake-up' feeling like crap and totally unrefreshed but that's par for the course isn't it?!