Sleep Study

[scarfgirl]

Having a sleep study done in a little under two weeks. Not really expecting much, since despite filling out a long questionnaire about my health, the doctor showed zero interest in my dysautonomia, and is looking at my sleep problems as a completely separate issue. I find anytime a doc ignores my chronic illness he's probably not gonna be right about anything else, since EVERYTHING goes back to the POTS. So I'm getting tested for narcolepsy even though I know **** well I don't have it.

Anyhow, wanted to get feedback from peeps who have also had a sleep study done, so I can compare my results with others. Also wanted to know if anyone actually got some of their insomnia, etc. fixed by having a study done.

Cheers!

S

[Christy_D]

My son had a sleep study done last September. They diagnosed him with Restless Leg Syndrome. They also did not take his POTS into consideration, but they also wouldn't give him any medication that they normally give for it because of the POTS. They had my son going to a sleep psychologist trying to get his insomnia and eratic sleep hours turned around, but she wouldn't listen to the other symptoms he also had to deal with. The psychologist wanted him up and out of bed every day at the same time. She didn't understand how he wakes up nauseated every day and can't get out of bed. So I stopped taking him.

Starting 2 weeks ago, his sleep completely turned around though once he started taking vitamin D. He falls asleep every night by 11:30 and is waking up in the morning. It has only been 2 weeks, but I'm hoping it holds out and hopefully doesn't revert back.

So basically the sleep study just added another diagnosis, but they weren't really able to help. My sons POTS doctor took the route of giving him a medication for his POTS that also had a sedative in it to try to help him sleep (Doxepin). It worked for a couple of weeks but then stopped helping him sleep. So, now it's the vitamin D.

[firewatcher]

Any doctor can set up a sleep lab. Only the ones certified by the American Academy of Sleep Medicine or some other specialist program are truly qualified to assess a sleep study. There is this nasty little type of insomnia that I'm betting most of us have: hyperarousal insomnia. It is caused by a state of sympathetic hyperarousal, aka too much norepinephrine. This will stop you from getting to sleep and disrupt the sleep you do get. It leads to that tired but wired feeling and deprives a person of the deep sleep that resets the neurotransmitter levels in the brain. Some of us are screwed up hypothalamically and in our circadian patterns. A sleep study won't show that. POTS definitely effects my sleep and sleep directly effects my POTS, so for a doctor to dismiss it as not relevant is just wrong. If you get a sleep study, make sure the doc that administers it is qualified.

[ramakentesh]

If you have POTS then chances are you suffer from daytime or morning sleepiness after being upright for a length of time - reduced blood flow to the brain will do that.

[scarfgirl]

My son had a sleep study done last September. They diagnosed him with Restless Leg Syndrome. They also did not take his POTS into consideration, but they also wouldn't give him any medication that they normally give for it because of the POTS. They had my son going to a sleep psychologist trying to get his insomnia and eratic sleep hours turned around, but she wouldn't listen to the other symptoms he also had to deal with. The psychologist wanted him up and out of bed every day at the same time. She didn't understand how he wakes up nauseated every day and can't get out of bed. So I stopped taking him.

Starting 2 weeks ago, his sleep completely turned around though once he started taking vitamin D. He falls asleep every night by 11:30 and is waking up in the morning. It has only been 2 weeks, but I'm hoping it holds out and hopefully doesn't revert back.

So basically the sleep study just added another diagnosis, but they weren't really able to help. My sons POTS doctor took the route of giving him a medication for his POTS that also had a sedative in it to try to help him sleep (Doxepin). It worked for a couple of weeks but then stopped helping him sleep. So, now it's the vitamin D.

I love my Vitamin D . It hasn't helped me get any sleep though.

[scarfgirl]

Any doctor can set up a sleep lab. Only the ones certified by the American Academy of Sleep Medicine or some other specialist program are truly qualified to assess a sleep study. There is this nasty little type of insomnia that I'm betting most of us have: hyperarousal insomnia. It is caused by a state of sympathetic hyperarousal, aka too much norepinephrine. This will stop you from getting to sleep and disrupt the sleep you do get. It leads to that tired but wired feeling and deprives a person of the deep sleep that resets the neurotransmitter levels in the brain. Some of us are screwed up hypothalamically and in our circadian patterns. A sleep study won't show that. POTS definitely effects my sleep and sleep directly effects my POTS, so for a doctor to dismiss it as not relevant is just wrong. If you get a sleep study, make sure the doc that administers it is qualified.

Thanks for that warning. I'll make sure to check on that.

If hyperarousal insomnia won't be noticed....then what the heck will they be looking for, apart from narcolepsy and RLS?

[firewatcher]

Any doctor can set up a sleep lab. Only the ones certified by the American Academy of Sleep Medicine or some other specialist program are truly qualified to assess a sleep study. There is this nasty little type of insomnia that I'm betting most of us have: hyperarousal insomnia. It is caused by a state of sympathetic hyperarousal, aka too much norepinephrine. This will stop you from getting to sleep and disrupt the sleep you do get. It leads to that tired but wired feeling and deprives a person of the deep sleep that resets the neurotransmitter levels in the brain. Some of us are screwed up hypothalamically and in our circadian patterns. A sleep study won't show that. POTS definitely effects my sleep and sleep directly effects my POTS, so for a doctor to dismiss it as not relevant is just wrong. If you get a sleep study, make sure the doc that administers it is qualified.

Thanks for that warning. I'll make sure to check on that.

If hyperarousal insomnia won't be noticed....then what the heck will they be looking for, apart from narcolepsy and RLS?

The biggest issue would be apnea. Central Apnea does not present with the wild swings in HR like Obstructive Apnea would. Your 7 day sleep log or actigraphy would show a circadian pattern, as well as your Morning/Eveningness questionaire. If they did not give you either, find another doc. The hyperarousal insomnia can be greatly helped with something like Klonopin and a beta blocker. Narcolepsy will show from an abnormal sleep phase pattern. Sleep studies can be very useful, like any test, as long as a knowledgeable doctor is looking at it.

[scarfgirl]

I think Klonopin made my problems worse. It may have helped me sleep at night, but it made sure I couldn't stay awake during the day.

They took me off Klonopin and Zoloft for the study, and while my insomnia has gotten worse, I can actually stay awake and focus a little during the day.

I had to cancel the study...thought I was catching a sinus infection and didn't want to be stuck somewhere where I couldn't do my little routine. I'll reschedule in the next week or so.