Sleep Problems - Bad

[Joni63]

Hello,

I've had sleep problems for years now. It started when I would wake up an hour earlier than I needed to no matter what time I went to bed. At the time I worked full time. Now, 2 children later (8 years) and one that never slept all night until 5 years of age, I am waking every night at 2am and CANNOT get back to sleep at all some nights. I layed there last night 2-6am when the alarm finally goes off I have a headache and feel like I'm dead to the world. It takes me a good hour to wake up and some days (most) I go back to bed once the kids are off on the bus. When I do wake up at 2am I feel wide awake and my mind is thinking all kinds of things I should be doing, tossing and turning and really restless, but in the morning after the kids leave I can sleep the best 2 hours.

I've never been able to sit in the same positions for a long time without moving my legs. And I always sit with them folded are with one under me (wierd, I know). Sometimes I think they are the reason I change positions so frequently at night. I also feel a heaviness in my chest when I wake up in the middle of the night.

So, I've had TSH, FSH tests that look normal and was tested for vitamin deficiencies at my last visit. I never got the bloodwork from the last visit to see what they actually tested me for. I've also had the CBC and Urinalysis. All the numbers are in range except my cholesterol was 109 and my EOS and EOS Absolute were both high in August. I have no idea what they are.

What should I ask the GI doctor tomorrow? I'm at a loss, but the lack of sleep is really affecting me. I have been prescribed Ambien, but never took it because I want to know what is causing the lack of sleep before I start popping medication. I'm really getting desperate to try it though, to hopefully change this awful pattern of sleep I'm having now. I also have Melatonin around some place that I bought a while back but never used.

I also need to add that the doctor who prescribed the Ambien keeps telling me it's hormonal. I used to have night sweats along with sleep issues. But since I went gluten free I no longer have the night sweats. I am 44 years old.

Any suggestions would be appreciated.

[Gemini]

Hello,

I've had sleep problems for years now. It started when I would wake up an hour earlier than I needed to no matter what time I went to bed. At the time I worked full time. Now, 2 children later (8 years) and one that never slept all night until 5 years of age, I am waking every night at 2am and CANNOT get back to sleep at all some nights. I layed there last night 2-6am when the alarm finally goes off I have a headache and feel like I'm dead to the world. It takes me a good hour to wake up and some days (most) I go back to bed once the kids are off on the bus. When I do wake up at 2am I feel wide awake and my mind is thinking all kinds of things I should be doing, tossing and turning and really restless, but in the morning after the kids leave I can sleep the best 2 hours.

I've never been able to sit in the same positions for a long time without moving my legs. And I always sit with them folded are with one under me (wierd, I know). Sometimes I think they are the reason I change positions so frequently at night. I also feel a heaviness in my chest when I wake up in the middle of the night.

So, I've had TSH, FSH tests that look normal and was tested for vitamin deficiencies at my last visit. I never got the bloodwork from the last visit to see what they actually tested me for. I've also had the CBC and Urinalysis. All the numbers are in range except my cholesterol was 109 and my EOS and EOS Absolute were both high in August. I have no idea what they are.

What should I ask the GI doctor tomorrow? I'm at a loss, but the lack of sleep is really affecting me. I have been prescribed Ambien, but never took it because I want to know what is causing the lack of sleep before I start popping medication. I'm really getting desperate to try it though, to hopefully change this awful pattern of sleep I'm having now. I also have Melatonin around some place that I bought a while back but never used.

I also need to add that the doctor who prescribed the Ambien keeps telling me it's hormonal. I used to have night sweats along with sleep issues. But since I went gluten free I no longer have the night sweats. I am 44 years old.

Any suggestions would be appreciated.

The fact that you are waking at 2:00 am and have trouble going back to sleep is classic peri-menopause and menopause related hormone issues. At 44 years of age, you are right on target with this.

I would wake up at 3:00 am and have the same trouble getting to sleep afterwards. It got really bad the year prior to diagnosis of my celiac disease but I was terribly run down. After diagnosis, things seemed to smooth out a bit as far as my sleep was concerned but the hot flashes and night sweats were terrible.

Many people think the gluten-free diet will cure night sweats and it can provide some relief but when you dump into full blown menopause and your hormone levels tank, they will most likely return. It's hormone mediated and foods only have a minor affect on them. Celiacs also tend to go through an earlier menopause than non-Celiacs, which I believe because of my family history of it.

I would suggest seeing a doctor that prescribes and is knowledgeable about bioidentical hormone replacement therapy. All naturally derived from plant sources and compounded to your personal situation, these help the problem immensely. It will also protect your bones, if your hormone levels are diminishing. Taking Ambien is a short term fix only and won't affect hormone levels. You don't want to become dependent on them either for a good night's sleep. I had a couple of years of no sleep and it is horrible. I sleep like a baby now, most nights, because I have my health back and am using hormones.

One other note....many doctors still use blood testing for hormone levels and it is not accurate! Saliva testing is the way to go and you will get much more accurate results of what is readily available for use in your body. I had blood testing and saliva testing, at 2 different doctors, and my PCP, who did the blood testing, told me my levels were good for a woman in my age group.....yeah, right! Then explain the raging menopausal symptoms, please? I then went for saliva testing and my numbers were where you would expect for someone with my extreme symptoms....low. As it was explained to me, the blood testing shows what's stored in your body, in the cells, and you may or may not be able to access and use what's there. Saliva testing is measuring what's floating around and readily available for use...hormones are not just in the blood. Many women are blood tested and told they are fine when they are miserable with symptoms. I strongly believe saliva testing is the way to go and many mainstream doctors will not agree.....we are used to that.

Now that I have been using hormones for about a year, my saliva testing is showing the results and the levels are up. It can be very hard to find a good doctor who knows what they are doing with this but I am so much better, sleep-wise! What I thought truly bizarre was how you wake up at EXACTLY the same time every night...like an alarm clock had been set! Welcome to the wonderful world of menopause and don't let any doctor tell you it isn't because of your age. I started with symptoms at age 38 and stopped my cycle at age 45 so good thing I didn't listen to them!

[Joni63]

The fact that you are waking at 2:00 am and have trouble going back to sleep is classic peri-menopause and menopause related hormone issues. At 44 years of age, you are right on target with this.

I would wake up at 3:00 am and have the same trouble getting to sleep afterwards. It got really bad the year prior to diagnosis of my celiac disease but I was terribly run down. After diagnosis, things seemed to smooth out a bit as far as my sleep was concerned but the hot flashes and night sweats were terrible.

Many people think the gluten-free diet will cure night sweats and it can provide some relief but when you dump into full blown menopause and your hormone levels tank, they will most likely return. It's hormone mediated and foods only have a minor affect on them. Celiacs also tend to go through an earlier menopause than non-Celiacs, which I believe because of my family history of it.

I would suggest seeing a doctor that prescribes and is knowledgeable about bioidentical hormone replacement therapy. All naturally derived from plant sources and compounded to your personal situation, these help the problem immensely. It will also protect your bones, if your hormone levels are diminishing. Taking Ambien is a short term fix only and won't affect hormone levels. You don't want to become dependent on them either for a good night's sleep. I had a couple of years of no sleep and it is horrible. I sleep like a baby now, most nights, because I have my health back and am using hormones.

One other note....many doctors still use blood testing for hormone levels and it is not accurate! Saliva testing is the way to go and you will get much more accurate results of what is readily available for use in your body. I had blood testing and saliva testing, at 2 different doctors, and my PCP, who did the blood testing, told me my levels were good for a woman in my age group.....yeah, right! Then explain the raging menopausal symptoms, please? I then went for saliva testing and my numbers were where you would expect for someone with my extreme symptoms....low. As it was explained to me, the blood testing shows what's stored in your body, in the cells, and you may or may not be able to access and use what's there. Saliva testing is measuring what's floating around and readily available for use...hormones are not just in the blood. Many women are blood tested and told they are fine when they are miserable with symptoms. I strongly believe saliva testing is the way to go and many mainstream doctors will not agree.....we are used to that.

Now that I have been using hormones for about a year, my saliva testing is showing the results and the levels are up. It can be very hard to find a good doctor who knows what they are doing with this but I am so much better, sleep-wise! What I thought truly bizarre was how you wake up at EXACTLY the same time every night...like an alarm clock had been set! Welcome to the wonderful world of menopause and don't let any doctor tell you it isn't because of your age. I started with symptoms at age 38 and stopped my cycle at age 45 so good thing I didn't listen to them!

Thank you so much for your reply!

I so agree with you about mainstream doctors. I have so many reasons I want to find a naturaopath.

I am so tired of giving symptoms to a doctor and then them just writing up a script for meds. There are reasons these things are out of whack and so many can be corrected by diet and natural supplements.

Yes, it is like clockwork. I look at the clock and it is always the same time within 5 minutes. I am so tired during the day and feel hungover. I have headaches and my vision even gets a little funny on the days it has been the worst.

Before being diagnosed with Celiac and going caffeine light, my PMDD was horrible. The only symptom I never had was the crying. I have seen a lot of the symptoms improve and was hoping it was the Celiac and not dealing with peri-menopause too.

The information you gave me about the bioidentical hormone replacement therapy and the saliva testing, it is very interesting. I have never heard of it but have always been leary of taking hormones or any medicines. I know they have their place and are necessary in some situations, but I like to make sure that's the case before I start taking them.

If you have a PCP, then you must have an HMO insurance? How do you find a doctor that treats with these hormones? Does your insurance cover your treatment?

I have the same question about naturaopath/homeopathic doctors. I hear of a lot of people on this board who use them, but does one have to pay out of pocket for their own health care?

Thanks again!

[dlp252]

Hey Joni,

I have a lot of issues with insomnia as well and have for years. My neurotransmitters (melatonin, seritonin, ephinephrine, noriphinephrine, etc.) are all off. Not sure exactly why (I have several health issues that can cause it), but we're supplementing specifically for that, and my sleep patterns have improved a little. I wake up at 1:00, 2:00, 3:00 and if I wake up at 4:00 I don't go back to sleep, but recently have been going back to sleep if I wake up before 3. My adrenal levels are also off (measured by saliva).

Up until a couple of weeks ago, I was taking about 200 mg of 5-HTP and about 12 mg of melatonin every night, and that still didn't help much. I even got some AmbienCR...that didn't help me at all, lol. Over-the-counter stuff like benedryl, sleep aids, tylenol PM etc, actually work the opposite on me...they tend to rev me up worse.

I don't have an answer for you, but gee I can sure emphathize!

[Gemini]

Thank you so much for your reply!

I so agree with you about mainstream doctors. I have so many reasons I want to find a naturaopath.

I am so tired of giving symptoms to a doctor and then them just writing up a script for meds. There are reasons these things are out of whack and so many can be corrected by diet and natural supplements.

Yes, it is like clockwork. I look at the clock and it is always the same time within 5 minutes. I am so tired during the day and feel hungover. I have headaches and my vision even gets a little funny on the days it has been the worst.

Before being diagnosed with Celiac and going caffeine light, my PMDD was horrible. The only symptom I never had was the crying. I have seen a lot of the symptoms improve and was hoping it was the Celiac and not dealing with peri-menopause too.

The information you gave me about the bioidentical hormone replacement therapy and the saliva testing, it is very interesting. I have never heard of it but have always been leary of taking hormones or any medicines. I know they have their place and are necessary in some situations, but I like to make sure that's the case before I start taking them.

If you have a PCP, then you must have an HMO insurance? How do you find a doctor that treats with these hormones? Does your insurance cover your treatment?

I have the same question about naturaopath/homeopathic doctors. I hear of a lot of people on this board who use them, but does one have to pay out of pocket for their own health care?

Thanks again!

I started going to an alternative medical doctor about 20 years ago for my "stomach" issues and other problems because I was getting nowhere with mainstream medicine. These are the people who eventually told me my problems were in my head because they could not find them. My "good' doctor" is an MD but prefers to treat via natural methods

and does less mainstream testing than most PCP's. I pay for her services such as office visits out of pocket but my HMO has been reimbursing me for any testing she does that is mainstream, like the blood draws for my thyroid. The saliva testing I pay for but it isn't too expensive......about 100-200.00 dollars, depending on which hormones she is testing for. Yes, I know some may find this pricey but I had no choice and it is working for me.

The hormones themselves are about 100.00 per month (for all) and I use 3 differnet kinds....estrogen, progesterone and DHEA. From what I have heard, the cost of mainstream pill hormones cost close to that because insurance does not always cover them totally so insurance companies are no better in this regard. There are more health risks with mainstream hormones, I believe, and I wasn't thrilled with the fact that some are derived from horse urine! I am taking them for hot flash relief that was debilitating and sleep issues plus for my osteopenia. I won't take Fosimax so my options were limited.

Finding a good doctor is a bit harder. I was lucky and found mine in the Yellow pages. There are many more of these types of physicians practicing so check your Yellow pages first or maybe an internet search for your area might produce results. I would tend towards a doctor who is an actual MD but practices alternative medicine also. Hormones are serious business and you need someone who knows what they are doing.

I should add that although I like my PCP very much, she thinks saliva testing in post menopausal women is unreliable but my question was, "Why do the saliva test results match my severe symptoms?" I was flashing almost non-stop and exhausted from them and yet she told me my blood hormone levels were fine...not low. Sorry, but I have no faith in their testing anymore. I also see my alternative MD for my low thyroid because mainstream medicine missed the boat on that one too! I still was having symptoms of low thyroid when they said my medciation levels were fine. Go figure!

The advice given on neurotransmitters and adrenal function was very good and those can become messed up with menoapusal issues too. All can be saliva tested.

Maybe if you post the state you live in, someone here could recommend a good doctor for you. My doctor is in Massachusetts, if you live anywhere near there. Keep us posted because I remember the hell I went through 3 -4 years ago with no sleep...walking zombie, I was, and that's no way to live! Good luck!

[tarnalberry]

I would encourage you to get a sleep study done, if you haven't already. That may help identify what issues are at play. It'll take at least a whole night, but just the one, most likely, and may help rule out (or in) a number of different issues.

[Joni63]

Hey Joni,

I have a lot of issues with insomnia as well and have for years. My neurotransmitters (melatonin, seritonin, ephinephrine, noriphinephrine, etc.) are all off. Not sure exactly why (I have several health issues that can cause it), but we're supplementing specifically for that, and my sleep patterns have improved a little. I wake up at 1:00, 2:00, 3:00 and if I wake up at 4:00 I don't go back to sleep, but recently have been going back to sleep if I wake up before 3. My adrenal levels are also off (measured by saliva).

Up until a couple of weeks ago, I was taking about 200 mg of 5-HTP and about 12 mg of melatonin every night, and that still didn't help much. I even got some AmbienCR...that didn't help me at all, lol. Over-the-counter stuff like benedryl, sleep aids, tylenol PM etc, actually work the opposite on me...they tend to rev me up worse.

I don't have an answer for you, but gee I can sure emphathize!

Thank you, Donna.

How did you find out your neurotransmitters were off and what other symptoms do you have? I'm curious what kind of testing you had done.

I think the new doctor that works in my PCP's office will be willing to test me for different things when I have the chance to go back and talk with her again. She is really nice and listens. Her whole family is in the medical field. I might actually switch to her as my primary later on.

I started going to an alternative medical doctor about 20 years ago for my "stomach" issues and other problems because I was getting nowhere with mainstream medicine. These are the people who eventually told me my problems were in my head because they could not find them. My "good' doctor" is an MD but prefers to treat via natural methods

and does less mainstream testing than most PCP's. I pay for her services such as office visits out of pocket but my HMO has been reimbursing me for any testing she does that is mainstream, like the blood draws for my thyroid. The saliva testing I pay for but it isn't too expensive......about 100-200.00 dollars, depending on which hormones she is testing for. Yes, I know some may find this pricey but I had no choice and it is working for me.

The hormones themselves are about 100.00 per month (for all) and I use 3 differnet kinds....estrogen, progesterone and DHEA. From what I have heard, the cost of mainstream pill hormones cost close to that because insurance does not always cover them totally so insurance companies are no better in this regard. There are more health risks with mainstream hormones, I believe, and I wasn't thrilled with the fact that some are derived from horse urine! I am taking them for hot flash relief that was debilitating and sleep issues plus for my osteopenia. I won't take Fosimax so my options were limited.

Finding a good doctor is a bit harder. I was lucky and found mine in the Yellow pages. There are many more of these types of physicians practicing so check your Yellow pages first or maybe an internet search for your area might produce results. I would tend towards a doctor who is an actual MD but practices alternative medicine also. Hormones are serious business and you need someone who knows what they are doing.

I should add that although I like my PCP very much, she thinks saliva testing in post menopausal women is unreliable but my question was, "Why do the saliva test results match my severe symptoms?" I was flashing almost non-stop and exhausted from them and yet she told me my blood hormone levels were fine...not low. Sorry, but I have no faith in their testing anymore. I also see my alternative MD for my low thyroid because mainstream medicine missed the boat on that one too! I still was having symptoms of low thyroid when they said my medciation levels were fine. Go figure!

The advice given on neurotransmitters and adrenal function was very good and those can become messed up with menoapusal issues too. All can be saliva tested.

Maybe if you post the state you live in, someone here could recommend a good doctor for you. My doctor is in Massachusetts, if you live anywhere near there. Keep us posted because I remember the hell I went through 3 -4 years ago with no sleep...walking zombie, I was, and that's no way to live! Good luck!

So, the saliva testing is not a mainstream test. Darn. And you have an alternative MD and a PCP. I guess the costs for the alternative MD are all out of pocket too?

I live in Southern, NJ. I will check around online and my mom told me my neighbor goes to somoene close by that is an alternative MD, but she's very hard to get into.

I would encourage you to get a sleep study done, if you haven't already. That may help identify what issues are at play. It'll take at least a whole night, but just the one, most likely, and may help rule out (or in) a number of different issues.

It probably would be a good idea, but I doubt seriously that I could sleep there. I can't sleep any place at all besides my own bed. I lie awake the whole night. Very frustrating.

I'll see what the GI says, but I don't expect much from him. If he won't run some tests then I will go back to the other doctor in my doctor's practice and see what she will be willing to do. I think her father was into pressure points and some chiropractic methods. I know her mother and sister who are midwives are into herbs. Maybe there is hope with her.

Thank you, I will let you know how I make out tomorrow.

[Gemini]

So, the saliva testing is not a mainstream test. Darn. And you have an alternative MD and a PCP. I guess the costs for the alternative MD are all out of pocket too?

My PCP is covered under my insurance but because she's in an HMO, the testing they perform is all mainstream and sometimes not very helpful. My alternative med doctor is mostly out of pocket, except for some testing, which my insurance reimburses me for. No funky tests though are covered.....just routine stuff. The mainstream medical profession is way behind in their testing methods. Why they have not accepted saliva testing as a valid means of measuring hormone levels is beyond me. You can't teach an old dog new tricks, I guess!

I know many people hesitate to pay for expenses out of pocket but when your health is suffering and the HMO folks aren't helping much, sometimes there is no choice. I am not a medication person and feel they should only be given when it's a life threatening or quality of life issue. HMO doctor's push pills that treat only the symptoms so people don't get good resolutions to their problems. I have found alternative medicine to be a life saver for me. You should be able to find someone good in your area and if there is a wait to be seen, they are probably good.

[tarnalberry]

It probably would be a good idea, but I doubt seriously that I could sleep there. I can't sleep any place at all besides my own bed. I lie awake the whole night. Very frustrating.

You don't actually have to sleep there to have a sleep study do you good - and they may also prescribe sleep aids if they're looking for apnea or something like that. There's plenty of measurements they can take while you're trying to get to sleep that can help. (Lots of sensors, everywhere! )

And a reasonable sleep center has a little room - just like a hotel room - that's at least not like trying to sleep in a hospital. I realize you may still not be able to get to sleep, it not being your own bed and bedroom, but it's nothing at all like being in a major 'facility'.

[dlp252]

How did you find out your neurotransmitters were off and what other symptoms do you have? I'm curious what kind of testing you had done.

I think the new doctor that works in my PCP's office will be willing to test me for different things when I have the chance to go back and talk with her again. She is really nice and listens. Her whole family is in the medical field. I might actually switch to her as my primary later on.

I see mostly integrated doctors, this particular one is part of the BioHealth system. They are out-of-network for me, but I have pretty good insurance that pays 70% for out of network. The office I go to will also bill my insurance company, so I don't have to pay up front. It's an integrated office in that they have a chiropractor, physical therapist, nutritionist (who is very celiac knowledgeable, lol) and internist. They work together as a team to treat each patient...they actually have meetings about ME, lol.

Here is a link to the main website:

Open Original Shared Link

They ran some tests from a place called NeuroScience.

Open Original Shared Link

The first test I took a few months ago was strictly for the neurotransmitters. I did a urine and saliva test for that. The second test last month was a combo neurotransmitter/adrenal test. I had my adrenals tested last year, and they wanted to see where my levels were now. Not much improvement I'm afraid. They are most likely being surpressed by the lyme, metals or mold toxicity.

As for symptoms, I have extreme fatigue. I can hardly get out of bed in the morning, and I also have energy dip in the late afternoon. Around evening I start normalizing. I go to bed at 9:00, and usually fall asleep right away, but wake up at 12 or 1:00, 2:00, and 3:00 (have to get up for work at 4:20). The first test I did a couple of months ago, they had me do the saliva test when I woke up the first time in the middle of the night so they could see what my levels were then. The test I did last month they had me do at the "normal" times for adrenal testing, which is usually 4 times throughout the day.

I get "dizzy" at time (like my brain is disconnected and just floating around inside my head). I actually have a TON of symptoms, but not sure what is related to what anymore, lol. Oh, and stressful situations definitely make things much worse.

I have to say that most of my doctors now are out-of-network and are more integrated...it's expensive, but this is also the first time that I've actually been able to find out WHY I feel the way I feel. I still DO see a PCP for annual check-ups and for "regular" labwork, etc.

I know many people hesitate to pay for expenses out of pocket but when your health is suffering and the HMO folks aren't helping much, sometimes there is no choice. I am not a medication person and feel they should only be given when it's a life threatening or quality of life issue. HMO doctor's push pills that treat only the symptoms so people don't get good resolutions to their problems. I have found alternative medicine to be a life saver for me. You should be able to find someone good in your area and if there is a wait to be seen, they are probably good.

I agree!

[Electra]

I would encourage you to get a sleep study done, if you haven't already. That may help identify what issues are at play. It'll take at least a whole night, but just the one, most likely, and may help rule out (or in) a number of different issues.

I second this one. I have Narcolepsy and can't function without my meds. I suspect you have a different form of a sleep disorder, maybe even restless leg syndrome, you should definitely do a sleep study either way just to rule it out at this point.

Good luck and I hope you get some answers soon!!

[tarnalberry]

I second this one. I have Narcolepsy and can't function without my meds. I suspect you have a different form of a sleep disorder, maybe even restless leg syndrome, you should definitely do a sleep study either way just to rule it out at this point.

Good luck and I hope you get some answers soon!!

I had a sleep study done because I have fibro and don't sleep well... I was borderline for restless leg, and the medication they put me on for it has helped wonders. I was already on all the supplements and minerals recommended for helping that, along with behavioral types of things, but this really did make a difference.

[Joni63]

I know many people hesitate to pay for expenses out of pocket but when your health is suffering and the HMO folks aren't helping much, sometimes there is no choice. I am not a medication person and feel they should only be given when it's a life threatening or quality of life issue. HMO doctor's push pills that treat only the symptoms so people don't get good resolutions to their problems. I have found alternative medicine to be a life saver for me. You should be able to find someone good in your area and if there is a wait to be seen, they are probably good.

Yes, you are right. It's well worth the money if you can feel so much better.

You don't actually have to sleep there to have a sleep study do you good - and they may also prescribe sleep aids if they're looking for apnea or something like that. There's plenty of measurements they can take while you're trying to get to sleep that can help. (Lots of sensors, everywhere! )

That is good to know! I won't sleep, even if it was a 5 star luxury hotel! I'll have to talk with the one doctor who I think will listen and see if she will recommend it.

As for symptoms, I have extreme fatigue. I can hardly get out of bed in the morning, and I also have energy dip in the late afternoon. Around evening I start normalizing. I go to bed at 9:00, and usually fall asleep right away, but wake up at 12 or 1:00, 2:00, and 3:00 (have to get up for work at 4:20). The first test I did a couple of months ago, they had me do the saliva test when I woke up the first time in the middle of the night so they could see what my levels were then. The test I did last month they had me do at the "normal" times for adrenal testing, which is usually 4 times throughout the day.

I get "dizzy" at time (like my brain is disconnected and just floating around inside my head). I actually have a TON of symptoms, but not sure what is related to what anymore, lol. Oh, and stressful situations definitely make things much worse.

I have to say that most of my doctors now are out-of-network and are more integrated...it's expensive, but this is also the first time that I've actually been able to find out WHY I feel the way I feel. I still DO see a PCP for annual check-ups and for "regular" labwork, etc.

I can't believe how similar out symptoms are! the only thing I don't get is the dizzy floating feeling (unless I have caffeine).

Donna, do you drink caffeine? I read some really good information about caffeine poisoning and I honestly had most of those symptoms until I went light on the caffeine. I'll try to find the link to the article and post it.

I second this one. I have Narcolepsy and can't function without my meds. I suspect you have a different form of a sleep disorder, maybe even restless leg syndrome, you should definitely do a sleep study either way just to rule it out at this point.

Good luck and I hope you get some answers soon!!

Thank you! I will definatly look into it.

I had a sleep study done because I have fibro and don't sleep well... I was borderline for restless leg, and the medication they put me on for it has helped wonders. I was already on all the supplements and minerals recommended for helping that, along with behavioral types of things, but this really did make a difference.

I went to the GI who is a personable as a fish, lol.

No matter what I ask him he gives short answers and never offers any information. I asked if my sleep problems could be related to Celiac and he said 'no, you can't blame that on Celiac'. then just changed the subject. He also tested my mom with bloodwork and endo/colonoscopy a couple months back because she has a lot of symptoms. I asked about her possibly having a wheat 'allergy' instead of Celiac and he said no, her bloodwork and endo came out fine. Oh my...

He did draw my blood to check my Celiac numbers so at least I will know how the diet is working, according to my values anyway, lol.

I wonder if my sleep phase cycle is just out of whack. I think I'm producing melatonin in the morning because I could sleep from about 4 or 5 until 11 or 12 easily. I might try the malatonin for about a week just to see if I can at least try to avoid the naps during the day. I think if I could get a few good nights sleep, the pattern might possibly change for me. I don't know, just sounds like it might be worth trying.

I'm sure this is not going to be fixed quickly, but I will look into the sleep study as an option.

[dlp252]

Donna, do you drink caffeine? I read some really good information about caffeine poisoning and I honestly had most of those symptoms until I went light on the caffeine. I'll try to find the link to the article and post it.

No. I used to but haven't in almost a year...not even decaf or diet sodas, lol.

I think it would be work it to try the melatonin...I have to take a huge amount of it, but it does help. (Although my doctor would like me to try a trial period off of it now that I'm taking the neurotransmitter stuff.)

[Joni63]

No. I used to but haven't in almost a year...not even decaf or diet sodas, lol.

I think it would be work it to try the melatonin...I have to take a huge amount of it, but it does help. (Although my doctor would like me to try a trial period off of it now that I'm taking the neurotransmitter stuff.)

I think so too. I'm going to call now and see if the bottle I have is gluten free. I've even heard of the time release melatonin. That really sounds like it would do the trick for me. I can't keep going without sleep and my whole day wasted from being tired because I'm awake at night.

One of my friends has anxiety and she said she also wakes up at night and can't get back to sleep. At the GI office today, the nurse and receptionist both said they wake up 2 am like clockwork. I honestly think a lot of us are in high gear so much that it's hard totally relax at night. It's almost like it's quiet and peaceful and I have time (without interuptions) to just sort through everything from the day before or the things I have going on the next day.

[dlp252]

I take two kinds of melatonin...both are time release. I take a tablet form, and then my doctor wanted me to try a sublingual, so I'm taking a liquid sublingual in addition to the tablets, lol. Once I get settled down with all the neurotransmitter stuff that I just added, I'll try slowing weaning off the melatonin.

[Joni63]

12 mg is a high dose, right? My bottle says don't take more than 3mg/day (24hours) , lol. Does it leave you groggy during the day?

I've read that it's good to start out at .5mg and see if that works first. Have you heard anything like that?

[dlp252]

12 mg is a high dose, right? My bottle says don't take more than 3mg/day (24hours) , lol. Does it leave you groggy during the day?

I've read that it's good to start out at .5mg and see if that works first. Have you heard anything like that?

Nope, not groggy...heck it barely helps me sleep. I've even taken more in the middle of the night when I wake up and that did nothing, lol. They had me taking valerian root, and that actually made me more hyper.

Yes, I've heard something similar about dosage, but no specific amount...just that the lowest effective dose should be taken. 12mg is a REALLY high dose, and I wouldn't advise anyone doing that without the consent and knowledge of their doctor. I think I started years ago with 1mg, and it did nothing. In November of 2006, I started seeing the BioHealth doctors and they had me take the 3mg time release. That basically did nothing either, lol, so after trying a few different combos of other things, they had me just increase the dosage, but they want me to try without now that I'm doing the neurotransmitter supplements.

[Joni63]

Nope, not groggy...heck it barely helps me sleep. I've even taken more in the middle of the night when I wake up and that did nothing, lol. They had me taking valerian root, and that actually made me more hyper.

Yes, I've heard something similar about dosage, but no specific amount...just that the lowest effective dose should be taken. 12mg is a REALLY high dose, and I wouldn't advise anyone doing that without the consent and knowledge of their doctor. I think I started years ago with 1mg, and it did nothing. In November of 2006, I started seeing the BioHealth doctors and they had me take the 3mg time release. That basically did nothing either, lol, so after trying a few different combos of other things, they had me just increase the dosage, but they want me to try without now that I'm doing the neurotransmitter supplements.

Wow, I really hope the neurotransmitter supplements will work for you. Sleep deprivation is a rough problem to have, especially when it goes on for years.

I think I'll try a small piece of the tablet and see how it goes tonight. I have a meeting that will last until 9 tonight so I know I'll be hyped when I get home from that.

[trents]

"One of my friends has anxiety and she said she also wakes up at night and can't get back to sleep. At the GI office today, the nurse and receptionist both said they wake up 2 am like clockwork. I honestly think a lot of us are in high gear so much that it's hard totally relax at night. It's almost like it's quiet and peaceful and I have time (without interuptions) to just sort through everything from the day before or the things I have going on the next day."

Mental health professionals will tell you that sleep problems can be evidence of depression. Some depressed people want to sleep all the time but others have insomnia; either they can't get to sleep (initial insomnia) or they wake up too early (terminal insomnia).

Steve

[Joni63]

Yes, I've heard depression can cause sleep problems. I don't think I am depressed, I'm usually a very optimistic, happy person.

I tried melatonin last night, at a .5 mg dose. I woke up like usual and took .5mg more. Seems as though it did not work for me. I'm not sure what to do now, any suggestions?

[dlp252]

Joni, I would try 1mg tonight. 1mg is still a safe dose. It seems like I've also read where some people may have to take it for a few days in a row before it starts working.

[Joni63]

I took the .5mg again last night. I can tell it did help some, but I still woke up 3 times. It helped because I didn't seem to be as fully awake or stay awake as long each time so that is good news.

I think your right Donna, maybe I need the 1 mg. I will try again tonight.

[dlp252]

Yeah, I'm always pleased if I can just get back to sleep as many times as I wake up, lol. It'd be better to sleep through the night, but as long as I'm not awake too long it's good for me.

[tarnalberry]

Yes, I've heard depression can cause sleep problems. I don't think I am depressed, I'm usually a very optimistic, happy person.

You can be optimistic and happy and still have depression, and anxiety. Most people would describe me as happy, and definitely optimistic, but I also have been dx'ed with something between dysthymia and mild-moderate depression concommittant with fibro. These things can come in a big tangled bundle that is difficult to untangle.

But, I don't mean to press it on you, of course, just wanted to clarify that you don't have to "feel all depressed" to have an impact in your life due to depression.