Going To Have A Sleep Study

[Sophia3]

Futurehope

I had to laugh out loud at the homicidal tendencies! yes, more exhaustion can do that. Though it's far from funny. Easy for "experts to tell us things from books".

And again, LACK of sleep is the same as "Driving" under the influence due to the slowing down of everything.

Add our exhaustion issues, it's AMPLIFIED.

Also Thankful ASK to see if you have Alpha intrusion, or alpha-delta sleep disorder...common with FM/CFS/ ANs problems

Also though most SLEEP SPECIALIST say keep bedroom for sleeping ONLY (or romantic activities) the best thing I EVER did for my 19 years of insomnia, is get tv with cable, or even better, DVD player..so you can play benign DVD's as you fall asleep. Put tv on a timer and you get no racing thoughts, or tossing and turning in the dark.

In all my years or reading I think I only heard or read one doctor agree with my personally figured out theory.

And by all means NEVER WATCH the news before going to bed. Local news is nothing but the "Rolling obituaries" of horror stories.

[janiedelite]

Thanks, Sophia, for the suggestions to ask about Alpha intrusion, or alpha-delta sleep disorder. And you're right about having something benign to focus on just prior to sleep. It really helps! My hubby likes to go to sleep sometimes while I still feel ramped and I always have a booklight and a novel on my nightstand to distract my busy mind...

[mrsdavidson8605]

hmm this is another puzzle to me.. I have noticed that on the nights where I get less than 8 hours (6-7) I actually feel a tad better than the days when I sleep 9 or more.. idk or maybe i'm so sick at this point that when i'm that tired my brain just turns it off!!!!! I actually was wondering if anyone feels better when they sleep less? With me I have some unanswered questions about my insulin and such and i'm wondering if that has to do with it.. who knows, right??!! I wish there was a giant ? mark on the keyboard to express how i feel!

[futurehope]

hmm this is another puzzle to me.. I have noticed that on the nights where I get less than 8 hours (6-7) I actually feel a tad better than the days when I sleep 9 or more.. idk or maybe i'm so sick at this point that when i'm that tired my brain just turns it off!!!!! I actually was wondering if anyone feels better when they sleep less? With me I have some unanswered questions about my insulin and such and i'm wondering if that has to do with it.. who knows, right??!! I wish there was a giant ? mark on the keyboard to express how i feel!

You are so similar to me. Remember my discussion about blood sugar?

As to getting less sleep, my experience is that it is true that less than 8 hours sleep, and I feel better. The catch? After a few days it catches up with me and I crash and need 10 hours at least. As a matter of fact, my sleep doctor looked at my log and suggested I only sleep the 5 1/2 - 6 1/2 hours that it seemed my body was doing, and then stay up. No naps.

Ha, ha. It unfortunately turned me into a homicidal maniac after 1 month and I haven't listened since. And that's not a joke. When I realized I could kill somebody and I didn't even care, I knew I was loosing my mind from lack of sleep. I now do what I want.

My POTS doctor had told me not to lay in bed too long either. Unfortunately, I've had such negative experiences with listening to docs, that I tend to only listen to my own advice anymore.

[cvincent]

hmm this is another puzzle to me.. I have noticed that on the nights where I get less than 8 hours (6-7) I actually feel a tad better than the days when I sleep 9 or more.. idk or maybe i'm so sick at this point that when i'm that tired my brain just turns it off!!!!! I actually was wondering if anyone feels better when they sleep less? With me I have some unanswered questions about my insulin and such and i'm wondering if that has to do with it.. who knows, right??!! I wish there was a giant ? mark on the keyboard to express how i feel!

I have noticed the same thing. If I get less than 8 hours of sleep I tend to feel better during the day. But here's the thing, I can only do this for a couple days before I crash. So is it worth the few days of feeling a little better? or is it better to just forget about it and avoid a crash? hmm, I can't seem to find any common ground with this. oh well, that's how it goes I guess.

Candace

[futurehope]

hmm this is another puzzle to me.. I have noticed that on the nights where I get less than 8 hours (6-7) I actually feel a tad better than the days when I sleep 9 or more.. idk or maybe i'm so sick at this point that when i'm that tired my brain just turns it off!!!!! I actually was wondering if anyone feels better when they sleep less? With me I have some unanswered questions about my insulin and such and i'm wondering if that has to do with it.. who knows, right??!! I wish there was a giant ? mark on the keyboard to express how i feel!

I have noticed the same thing. If I get less than 8 hours of sleep I tend to feel better during the day. But here's the thing, I can only do this for a couple days before I crash. So is it worth the few days of feeling a little better? or is it better to just forget about it and avoid a crash? hmm, I can't seem to find any common ground with this. oh well, that's how it goes I guess.

Candace

Ditto. I agree.

[janiedelite]

Okay, I did my sleep study last week and I just got back from my appt with the sleep doc. He said I didn't have any apnea, and I guess I slept on my back for half of the night after all! My oxygen levels were normal all night. I also had normal amounts of time in each sleep phase, including REM.

Sophia, I asked him about the connection between sleep disturbances and CFS/dysautonomia/fibro and he said that there isn't any known connection. Even though he is touted as the local "expert" I don't think he's really up on the latest research. And even though he's a neurologist, he knows very little about dysautonomia. But to his credit, he admitted that he really just doesn't know about CFS or related issues. He said "the medical community is very good at treating sleepiness but fatigue is another thing altogether. We just don't really know what causes it."

I also told him that I practiced his restricted sleeping schedule and that my neuropathy pain, orthostatic tachycardia and fatigue worsened as a result. He didn't really know what to say was the cause of my morning fatigue (what I described also as a "hangover feeling"), headaches, body pain, etc. I told him I assumed it was a result of morning dehydration and muscle pain from the back and hip injuries I've incurred. He said that there's nothing he can do to help me with my fatigue/brain fog since my sleep study was normal.

So I've gotten a diagnosis at Mayo, did a sleep study to rule out anything else. I don't think there are any other tests I can have done !

Stick a fork in me and pull me out of the oven... I'm done,

Janie

[Miriam Poorman-Knox]

I would run it by a pulmonologist. They know sleep studies and the different things that would explain. That has been the best help. If you get a good sleep doc. they don't necessarily have to be an expert in pots. The symptoms and problems will guide. Hope this helps. M

[janiedelite]

Thanks, Miriam. I'm mostly glad that the doc ruled out apnea, but I'm going to get a copy of my records in case more problems arise. I'll keep in mind about following up with a pulmonologist.

Janie

[Sophia3]

"Sophia, I asked him about the connection between sleep disturbances and CFS/dysautonomia/fibro and he said that there isn't any known connection. Even though he is touted as the local "expert" I don't think he's really up on the latest research."

WOW. No offense but the fact this "sleep expert" said these words shows what a POOR UNINFORMED doctor he is. It has been talked about in CFIDS journals and sleep journals for YEARS the lack of restorative sleep and or alpha-delta intrusion issue. Also with FM.

Sorry he was a dead end. Mercy. I was told back in the mid 90''s of the sleep problems with CFS AND FM. I did not yet have my dx of Autonomic dysfunction back then. But at least my sleep doctor had a clue.

[janiedelite]

"Sophia, I asked him about the connection between sleep disturbances and CFS/dysautonomia/fibro and he said that there isn't any known connection. Even though he is touted as the local "expert" I don't think he's really up on the latest research."

WOW. No offense but the fact this "sleep expert" said these words shows what a POOR UNINFORMED doctor he is. It has been talked about in CFIDS journals and sleep journals for YEARS the lack of restorative sleep and or alpha-delta intrusion issue. Also with FM.

Sorry he was a dead end. Mercy. I was told back in the mid 90''s of the sleep problems with CFS AND FM. I did not yet have my dx of Autonomic dysfunction back then. But at least my sleep doctor had a clue.

Yeah, it's unfortunate. I know I have sleep disturbances, but at least I know they're not lethal like sleep apnea can be. I could tell from my initial appt with this doc that he didn't have any idea how ANS disturbances affect sleep so my expectations weren't very high. I'll go back to Mayo if my symptoms get worse where people don't look at me like I have 2 heads when I talk about dysautonomia. I'm thankful for my PCP who suspected dysautonomia in the first place and for the neurologist who sent me to Mayo.