I have never written on a message board of this type but am desperate. I am praying someone with medical knowledge can help. I have had a sleep disorder for years but now am diagnosed with Early Onset Alzheimer's Disease at age 51 and now I sleep worse. I have tried everything (really). I have had a sleep study at one on best in nation and they said I was the worst study they ever saw. I slept zero minutes. They felt so sorry they gave me free Cognitive Behavior Therapy and it didn't help at all. I eat very healthly, touch zero caffiene, no chocolate, read labels carefully, have tried all non script sleep aids and well as all prescriptions. Ones like Lunesta give me hurrendous nightmares. I have taken Flurazepam for years. Now that isn't even working. Most nights take two, still no sleep. Last night I took two (my max allowed) plus valium for when I am desperate and still no sleep. I dont have anything on my mind, I am not depressed, I JUST DO NOT GO TO SLEEP. I have tried warm milk, hot baths, meditation, relaxation exercises, accupunture, chiropractic, tart cherry juice, pumpkins seeds, herbal teas, herbs, you name it I have tried it. I have researched the heck out of this and can't find any solutions. My doctor last month tried me on 6 different meds (all narcotics which I hate) and not one helped me sleep. I am wondering if the part of my brain that is affected by Alzheimers could be going first and is this why I am not sleeping. GOing to call doctor AGAIN who last time I talked to her (and she is a great integrative medicine doctor) she said she new nothing else to try and had given up. Now what do I do. I have few days and memories left and each night i don't sleep the next day is wasted because I am too tired to do anything. I can't even nap, nothing. I am going to call and insist on a PET Scan. I have had MRI but not PET scan. Does anyone have any experience with anything like this? I am a walking zombie. I feel like this no sleep is killing me. Please don't suggest things everyone talks about, I really have tried all the things suggested on any sleep sites. Desperate.
I should also add it is not hormones. I am not menapausal, doctor checks hormones regularly and we have tried bioidentical hormone replacement therapy and the sleeping problem became worse. She felt that progesterone would help me sleep, it didn't. WE tried for 8 months.
Hey, that must be really hard for you and I wish you the best. I do not know the cause of that problem but I could tell you that the Hypothalamus is what regulates your sleep and mood. It is probably an issue with that part of the brain, whether is be damaged or malfunctioning. I am not a doctor by any means but I have been having ongoing fatigue issues for the past month now and still no results either, but I am only 22 years old. Sometimes I have trouble sleeping but it's do to my anxiety and I am working on that. You have said that you tried every technique there is so I don't any advice for you to help you sleep but stress never helps anything. I understand your frustration with doctors and the overall health system when they cannot find answers, believe me. Try to stay positive and keep searching for answers, dont give up. Just a quick question, are you having any other symptoms with this sleep loss?
Thanks for your reply and encouragement. Unfortantely things have gotten worse and I ended up in ICU at the hospital this week for exhaustion and my blood pressure sky rocketed from not sleeping for three days. I am now having other symptoms like jaw and hand tremors, vision problems, stomach problems, etc. I am getting a PET scan hopefully in the next week or so am hoping they find some answers. I am now beyond exhausted and feel sick all the time. I really do appreciate your response though. I am so desperate and praying someone will have an idea since the doctors are just scratching their heads.
What type of stomach problems and vision problems particularly? My doctors are scratching their head as well considering all my results are coming out normal. My problem maybe depression but I am not a depressive person so I don't really get that one. I also feel exhausted all the time with brain fog. I know their is something physically wrong but it seems they cannot find it. I have been sleeping 6-8 hours a night, but I wake up as if I never slept, yet I don't have insomnia or sleep apnea. It's confusing but I believe theirs an underlying issue causing all of this. Their was one night where I haven't slept at all because my mind was racing, and that day I felt really really horrible like I was going to just die. I can only imagine 3 days in a row. I mean PET scan should defenitly show something because your problem definatly sounds brain related. Your brain is usually the cause of sleep disorders, so I think that scan will do you justice and get a proper diagnosis. Good Luck to you!!
Also, Let me know the results of your PET scan, I would love to hear about it. Thanks
Last edited by PAfire; 03-21-2012 at 04:01 PM.
Reason: Missed something
PAfire is right about the hypothalmus. You have an area in the brain called the HPA-axis (Hypothalmus-Pituitary-Adrenal axis). When you don't get sleep your body becomes stressed producing cortisol and adrenaline to keep you alert and functioning. With more stress and more lack of sleep, the HPA axis will continue to signal the adrenals to create more cortisol.
I suggest you read about phosphorlyted serine or phosphatidylserene. It is being used more and more for Alzheimer's patients. I use it but don't have Alzheimers. I use it to reduce the cortisol and calm my HPA axis. It's a phospholipid that our bodies need and should have. But with age and stress we produce and absorb less of it. It helps with cognitive function.
I only read a little about it when researching ways to lower my cortisol levels for sleep so don't know all the details for Alzheimers. It's an inexpensive supplement and it has made a difference for me. I still don't sleep perfectly, but the sleep I get is better quality. I buy it online (I've never seen it sold in health food stores).
I hope you find some answers and relief. Not sleeping sends the whole body into a tailspin. Physically and mentally. I know this supplement sounds too simple to work, but it brought me some relief. It will take about a week more or so before you see a difference. Good luck!
PAfire, You sound like you have adrenal fatigue. You will never get tested for this with a regular medical doctor and if you ask them about it, they will dismiss it promptly.
I would suggest you have your cortisol levels checked. If you have a chiropractor or naturopath that you can see, they can do the saliva test for you. Or you can got to ZRT labs online and order a saliva test and do it on your own. I did a saliva test and it showed high cortisol levels where they shouldn't be that high. However, if you do the test on your own, you will still need a doctor to interpret them and treat you.
You sound like you you've gotten to the point where you may not be producing enough cortisol anymore. If you're sleeping well but still dragging, you're adrenals are tired and not able to keep up any longer. Most doctors and endocrinologists will only look for the two ends of the spectrum when it comes to adrenal glands - either they're totally fried and you have Addison's Disease or your producing way too much and have Cushings Disease. Why these doctors don't think there is an in between I don't know. It's not like you wake up one day with any disease. You don't just get arthritis. You don't just get cancer. It started and developed. Why is it so hard for these doctors to think that can't happen with adrenal glands? They don't *bam* stop working. They have to be worn down and then they may stop. I fully expect adrenal fatigue will become a diagnosed disease - just like fibromyalgia used to be "just stress" 20yrs ago. Now it's a diagnosed disease with RX treatment.
Anyway, look into adrenal fatigue and see if it fits your confusing symptoms. Your doctors are scratching their heads because they're probably dealing with something they refuse to accept as a real medical condition. One day they will, I'm sure of it. But for now, it doesn't exist and everyone who presents with it is "depressed" or "just stressed".