Since my brain stem stroke two years ago this month, I've developed the above disorder. My research revealed this happens to 60% of brain stem and stroke patients. This is another one of those things neuros don't tell you with most patients finding out like me.

I have a great doctor for my sleep disorders since I have sleep apnea and use a CPAP machine to sleep at night also. In reviewing my sleep data, the results look like a DNA sample with no regularity and sleep periods of 2 to 4 hours at a time. Ambien and Lunesent, even narcotics have no impact other than to make me feel like crap.

My sleep wake routine is, no routine at all. Obviously this situation creates sleep deprivation, which a cumulative condition and takes more than one good night's sleep to reset. In addition, I've now been diagnosed with severe depression and am now on Celbrexa(sp). Thus, you now know what I have to deal with on top of the neuro disease symptoms. A multi-front war at the least.

My question, does anyone else suffer from this condition and do you have any hints, tricks, or advice to deal with it?

Sorry to hear that you are suffering with this. I don't believe that I have the same diagnosis as you do, but I do have a very erratic sleep pattern...it's 4:11 am and I'm posting on here LOL. As you can see, I still have my bad nights but, I do take trazidone at night and it really helps me to stay asleep once I fall asleep. It doesn't work all of the time for me, and I still have restless nights, but not nearly the sleep deprivation that I suffered before the meds. I hope you get some relief.

My sleep is very erratic, too. Not sure I have a "disorder" or am just a very light sleeper. Any noise, no matter how faint, will wake me up. As a result, I only sleep 3-4 hours at a stretch. I sleep the best between 6-9 AM. I don't take any medication to help me sleep. I know I can take a nap during the day if I need to so I just kind of take whatever sleep I get whenever I get it. I don't feel tired or sleep "deprived" so I guess I get enough rest with all my combined naps.

I hope you find something that works for you.

I try to keep a schedule. I am up at 6am. I am in bed at 9pm. If I am not sleeping, I am at least resting. Of course sleep is more precious than restful awakeness, but I can only do what I can do. If I spend a sleepless night, I will spend the next day doing quiet activities or restful things. I try to not indulge in nap after nap or I wont sleep the next night.

I have found meditation, and the good night feet, good night legs, and so on style chat with myself help. I also practice "sleep breathing" we all change our rythmn of breathing when we drop off. it becomes deep and has a pattern. I fake that, and sometimes its enough to trick my brain into going into dream land.

Im sorry you struggle. sleep is so important.

I don't have your A/S disorder, persay, Craig, thank heavens. You poor baby. But I have a awake/sleep pattern all my very own.

Awake 6 hrs - asleep 4 hrs - awake 2 hrs - asleep 3 hrs - awake 6 hrs -asleep 3 hrs......works for me, most of the time.

Our normal sleep signaler is melatonin. This is made in the brain by converting serotonin using methyl B12 to melatonin.

Some drugs have been shown to impact melatonin in the brain.
SSRI drugs (your Celexa would be one of those) and also beta blockers used for the heart/ or blood pressure.

You can request a B12 test at the doctor's. If it is lower than 400, then you would profit by taking the methylcobalamin orally. This is not expensive. Methyl form is the active form, and is available on the net. Please see my Stickie on PN about B12. I used this B12 during my menopause and still do...it really helps with sleep quality.
Nutrition groups and the NIH recommend all people over 50 to take an oral form of B12 because it is so commonly low in the elderly. Poor sleep is also very common in the elderly!

You can also take melatonin orally at night, average dose is 1 to 3 mg and you'd probably want to try the 3mg. You take it 1 hr before retiring. Within a week, you may see improvements.
This is also not expensive, and worth a try IMO.

There are melatonin receptors in your retina of the eye. If you get up in the night and turn on lights, watch TV, read or come to the computer, those receptors will shut off your normal melatonin and screw up your sleep cycle. If you can, try to stay in the dark, and use a minimum of night lights to guide you to the bathroom. This light exposure alone can be enough to prevent you from sleeping more normally.

Well, I'm glad to hear I'm not all that alone with this challenge. I must mention in testing Ambien and Lunesent, nothing changed. I was still up after only two hours of sleep.

In addition, since my stroke I have weak respiratory response syndrome, which means my doctors are very careful not to give me something that may cause me to go to sleep, BUT, never wake up again. That would really **** my wife off.

This is a big reason I was sternly warned away from any herbal supplements to assist sleep especially on top of the other pain narcotic meds.

I've tried everything to "reset" my sleep pattern, but nothing works. I've learned to just go with the flow. Sleep when sleepy, wake when awake. This has contributed to the slow recovery from the bronchitis I have had since Nov. 20th. Not bad but still remnants.

Much of this is never told to you by your neuros and other doctors until it comes up. Would have been nice to at least know what to have expected especially after the stroke. Thank you all for your support and sharing your experiences.

Melatonin is not an herb. It is a natural hormone your body makes when it is healthy and not being negatively impacted by the drugs doctors give you.

You won't have any if your B12 is low. You will mess it up by exposing yourself to light when you need to be asleep.

It is often used to help reset people with jet lag.

No, doctors won't tell you about it. If you want I'll spend some time and get you the documentation, but it is often here on the various NT forums over the years because this question comes up frequently. Losing sleep is very very common.

for example
http://www.ncbi.nlm.nih.gov/pubmed/9622603

http://en.wikipedia.org/wiki/Vitamin_B12

In fact, many doctors don't even know what methylcobalamin is.
They think cyano would work, and it will only do so if the patient can detoxify/remove the cyanide portion from it and methylate it in the body. Some people have a genetic failure and cannot do this function. Methylcobalamin is now available at low prices OTC. Use orally in 1 up to 5mg daily on an empty stomach is as good or better than cyano injections of B12.

This Wiki article explains the wavelengths of light that affect melatonin secretion in your brain:
http://en.wikipedia.org/wiki/Melatonin
It is very interesting!
There are sunglasses called BluBlockers which block blue light.
Melatonin is secreted from the pineal gland, which is not in the brainstem. It is just above it, as shown in this diagram:
http://en.wikipedia.org/wiki/File:Gray719.png

Day three and I'm still awake. Would you believe that my neuro told me that sleep disorders aren't a symptom of ms?!

Ok, I need to slap that guy! Sleep disorders ARE a huge part of MS, and greater than 75% of us suffer from them. If its not the disease itself, its the meds we need to take that cause the side effects of interupted sleep. Let me go put all my biggest rings on before I punch him.

I had a very interupted night last night. Sleep for 10 mintues awake for 10, and then we start over again. no idea what triggered it, but it has left me wasted.