Sleep Study and other test results...

[maryb]

tamsyn
the reason I want to come off zopiclone is not because its addictive but because I'm having memory problems in addition to the general brain fog, people need to be aware of the side effects too, and what they choose then is up to them.

 

[soxfan]

I have been taking kavinace for almost a year along with 0.5 klonopin and I do sleep pretty well about 85 percent of the time but I wake up feeling so crappy...tired..and just not good. I am beginning to think maybe I am having a hangover effect from klonopin since it has such a long half life. I always need to use very small doses.

I have tried gabapentin off and on but not long term so I am not really sure if it would help..it is possible as the sleep specialist also recommended it for deeper sleep. I want to get off klonopin first then move on to other options

My serotonin levels are finally in the normal range. Melatonin not so much but I have tried that with no luck.
If my sleep was better I would be able to function way better..poor sleep quality really has done a number of my quality and function of life. I also believe it has caused my lack of ability to deal with small stress...anxiety and bouts of crying. I,haven't had good sleep in about 9 years and I can't understand why nothing improves it.

 

[Little Bluestem]

Here is Dr Teitelbaum's list of ideas to try for improving sleep. Some are prescription and others are supplements.

___ 22.** Ambien (Rx, zolpidem) - 10 mg- ½ to 1½ at bedtime. If you tend to wake during the night, leave an extra ½ to 1 tablet at bedside and you can take it as needed to help you sleep through the night.

___ 23.** Revitalizing Sleep Formula (30 ct or 90 ct) (Enzymatic Therapies/Integrative Therapeutics ) - Valerian 200 mg, Passion Flower 90 mg, L-Theanine 50 mg, Hops 30 mg, Piscidia 12 mg and Wild Lettuce 28 mg. Take 2-4 capsules each night 30 to 90 minutes before bedtime. It can also be used during the day for anxiety. If Valerian energizes you (occurs in 5-10% of people) use the other components. It is also excellent for anxiety. Do not take more than 8 capsules a day.

___ 24.* Desyrel (Rx, trazodone) - 50 mg - ½ to 6 at bedtime. Although sedating, it can be used (50-250 mg at a time) for anxiety. Do not take over 450 mg a day (or 150 mg a day if on other antidepressants).
[snip]

Does anyone know what the asterisks by some of the items mean?

ETA:
Dr. Teitelbaum says

Mixing low doses of several treatments is more likely to help you sleep without a hangover than a high dose of 1 medication.

I am finding mixing low doses of several treatments to be a move in the right direction, although I have not solved my sleep problems. I take some of my ‘sleep aids’ during the day, too. I find that keeping my autonomic nervous system calmer during the day make it easier to get it calmed down to ‘sleep mode’ at night. It also makes me feel better during the day.

And

No going to the bathroom if you wake up unless you still have to go 5 minutes later.

I would not still need to go 5 minutes later. I would have already wet my bed! I do not often wake up in the night needing to go to the bathroom, but if I do, I need to go.

 

[Nielk]

I had a sleep study done last night and had a total of 1/2 hours of sleep! I was so uncomfortable and just kept tossing and turning. I am so upset because I am afraid that this experience will set off a colossal PEM reaction. This is the last thing I need right now in my life. I'm not sure why I'm posting this. I guess I just need to rant a bit. I feel today like I do in my deepest regression of this disease. I really hope it's very temporary.

 

[Beyond]

Sorry to read that Nielk. That really makes me consider not doing the sleep study I have been waiting now for like 5 months... You sleep way worse than in home which makes the results unrealistic and anyway they often cannot find the cause of the sleep disorder if it is not some kind of apnea... Doing the sleep study looks like a great way to get an awful night of insomnia with the subsequent day of worsened symptoms.

 

[Nielk]

Sorry to read that Nielk. That really makes me consider not doing the sleep study I have been waiting now for like 5 months... You sleep way worse than in home which makes the results unrealistic and anyway they often cannot find the cause of the sleep disorder if it is not some kind of apnea... Doing the sleep study looks like a great way to get an awful night of insomnia with the subsequent day of worsened symptoms.

Thank you. What really upsets me is that I have seen improvements in my sleep lately and have been in a good groove with it. The reason for the study was for sleep apnea and my doctor feels that this might be contributing to some of my current issues. They told me at the study that I will have to repeat it. I'm thinking in five years.

 

[Beyond]

I hope the results of the study helps you to get a better treatment! Of course, I am not going to write that "I hope you have sleep apnea" because that is just too weird lol, but I know that we want something to pop up in the multiple tests we withstand... so that something can be researched and treated.

 

[soxfan]

I know where you are coming from Nielk....when I had the study done last year I was sleeping really well. The night of the test I was sure it was going to be fine and I was going to get a good study done. Well....it was a horrible night and I kept popping 0.50 mg of Klonopin hoping it would knock me out. It of course didn't and I got up the next morning feeling insanely horrible.
Unless you have sleep apnea or RLS I think these studies are useless because if we aren't getting the correct stages of sleep time they say they don't know why or can't help.

I have been using 0.25 of Klonopin to sleep for about 8 months and even though I wake up at night I seem to be able to go back to sleep. I have found the less stuff I take the better I feel in the morning. I recently moved from NH to NC and it was incredibly stressful...I think my cortisol spiked two months ago and continues to run rampant in my body. The minute I lay down at night it feels as though there is electricity running through me. I am able to fall asleep but wake up 4-5 times during the night.

I have had 2 studys done and didn't sleep at either...I don't really have anything to offer other than I have been there too....

 

[Nielk]

Thanks @soxfan - Do you have sleep apnea?

 

[*GG*]

Thanks @soxfan - Do you have sleep apnea?

I had 2 sleep studies done, about 3 years apart. Don't think much was found with the first one, except little REM sleep. The 2nd one I was found to have obstructive sleep apnea, brought the results to my good CFS Dr, because I was enquiring about oxygen, which I think I read about on this site. He prescribed it to me.

GG

 

[soxfan]

I do not have sleep apnea...I only had few interruptions in breathing per hour and they said my oxygen was at 95 percent whatever that means..they said that was good.

 

[Little Bluestem]

Sorry to read that Nielk. That really makes me consider not doing the sleep study I have been waiting now for like 5 months.

Is your sleep specialist a neurologist with knowledge of sleep architecture? If so, the sleep study could be helpful. If not, it is not likely to help unless you have sleep apnea or restless leg syndrome.