Lenna Posted January 20, 2012 Report Share Posted January 20, 2012 My son's doctor is referring him for a sleep study. Dan's POTS symptoms have become much milder during the past year (he was determined to have "low flow" POTS and was put on Losartan - ) but his sleep quality is still very poor. Melatonin has drastically improved his insomnia, but he still wakes up exhausted after 10 hours of sleep. He starts to shake off the fatigue around noon. He's off to college in the fall, and I'm concerned that sleep issues will be a huge obstacle. I know that many people on this forum have had sleep studies, but I don't know if their sleep quality improved afterwards. What kinds of diagnoses were made (apnea?) and what kinds of treatments were prescribed? And have those treatments helped? Please share your stories. Thanks.Lenna Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 20, 2012 Report Share Posted January 20, 2012 I was just thinking today about posting a poll about sleep. I get around 7-8 hours, but still feel so tired, like I didn't sleep at all. I had a sleep study done a few years ago and it showed reduced deep sleep, but wasn't given any recommendations afterwards. I'm not sure what can be done, besides sleeping pills and I'm not going to do that. I guess it depends on the diagnosis - I know there's good treamtent for sleep apnea. I think it's worth having done, just to get an idea of what's going on. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 20, 2012 Report Share Posted January 20, 2012 My night time sleep study (which was done first) produced a report that I had very mild sleep apnea that did not require treatment. A week later my day time study showed severe hypersomnia without narcolepsy. When I met with the "sleep doctor", I knew in about 2 minutes that he was going to try to put a CPAP on me and give me pills for depression. I also knew that was not what I needed. I did agree to try the CPAP machine which made me so nausueous that I only wore it for 45 mins. 2 nights in a row. The day he deemed me to have sleep apnea and depression, I later learned I had POTS from my cardio. I returned the CPAP. I do still have sleep issues and I believe that there is probably a "sleep doctor" out there that could help me, but, I haven't pursued it. I genuinely think the one I saw was a quack and was not interested in looking for anything outside of the box. I would want to see someone that knew of dysautonimia if I were to pursue this again. Quote Link to comment Share on other sites More sharing options...
peregrine Posted January 21, 2012 Report Share Posted January 21, 2012 My neurologist just recommended one today as a potential course of action; we haven't decided to go forward with it yet. I have bad sleep - often though not always triggered by medication (norepinephrine-reuptaking meds seem to make it much worse) - so I take Seroquel to keep me from waking up as much in the middle of the night. She is very concerned that my sleep is bad and thinks that fixing it will be a good thing to do once some other testing gets done, I think. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted January 21, 2012 Report Share Posted January 21, 2012 I've had 2 sleep studies--done by different facilities. Both read the same. I do not go into Stage IV (deep phase of sleep) and very little rem. What little sleep I did get was in Stage II (light) and even then the alpha waves that wake you up in the morning intruded on my sleep phase close to 200 times. I also had proven to have hypersomnia and narcolepsy. What good came out of it was a couple of years later. The melatonin the sleep doctor kept adjusting along with bedtime, did absolutely nothing for me. My rheume asked to see my sleep study and she told me I had to be on Rx for sleep (tissue repairs in deep phase of sleep). Now the Rx I take is very mild and takes a long time to work and I am still a light sleeper but at least I am able to get some sleep no matter how little. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted January 21, 2012 Report Share Posted January 21, 2012 I opted out of sleep study, but may consider it in the future. However, I would say I have had chronic ongoing insomnia for the past 12 years..... and honestly i think since i was a child, going through middle and high school as well..... I have tried every sleep med out there and even had higher than normal dosing, and still nothing worked. Nothing knocks me out or keeps me to sleep. Any and all sleep i do get, even during times the sleeping would do a 360 and id be sleeping abnormal hours for a few months..... i never ever felt rested..... ever. I think i've repeated that phrase to docs for a good decade now..... or longer. Physically, mentally....... never did i feel rested even if i fell into a deep sleep which might only happen here and there, but not often. However, I have noticed for some reason, im really not sure.... but since I started on the Klonopin and the mcad med regimen..... and switching between lunesta and trazodone, so as not to develop a tolerance..... I started sleeping of an improvement of at least 55% (guestamating an average)...... I was determined to completely come off of lunesta, as i want to be on as less 'chemical' and 'controlled substance' stuff as possible. I now, instead of taking my klonopin at 7am and 5pm, i take it at 7am and wait until 9pm and take it with 50 mg of trazodone, some nights needing 100mg. So, i've been off of lunesta for some time now. Some nights, no trazodone (i never sleep good those nights, but i try to do without some because they cause even worse headaches for me upon waking and we haven't gotten the 2 or 3 years ongoing headache at bay yet). I feel inside that the klonopin has made the most impact on my sleep, as my mind never stopped racing with worries, anxieties, stressors, it's like i never could shut it down, etc.... once i started the klonopin i did notice within a few weeks i could actually tell my doctor.... i feel as if my body is resting for the first time in 15 years...... maybe my whole life. So, an impact like that, is an impact noteworthy. But i think starting to understand and control the mcad had something to do with it too im sure.....right now, i still have about 3 bad days of sleeping per week which could easily be a few nights of no sleep altogether.... and maybe 4 good days with less wake ups and more sleep..... and vice versa/more or less...... but i do notice i have developed out of it's own way a good sleeping habit....my sleep is still far from what it should be but it has come a long way in a short period of time.... im hoping its not just one of my 'cycles' and comes back.... many symptoms cycle i have noticed, but still are unpredictable.....sorry, im rambling..... hope this helped in some odd way....best wishes for good sleeptennille Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 21, 2012 Report Share Posted January 21, 2012 Yes, being on a Cpap machine has helped me immensely. I have sleep apnea, heart palpatations, and arousals that wake me up all the time. I also take Clonazepam. It really makes the difference during the day. I read that 30% of us that have Dysautonomia have sleep apnea. I would get checked for it. Quote Link to comment Share on other sites More sharing options...
jangle Posted January 22, 2012 Report Share Posted January 22, 2012 I did a sleep study but I only slept for 2 and a half hours. Still he said I didn't have any sleep disorders, but I wonder if I really slept long enough to definitively tell. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted January 23, 2012 Report Share Posted January 23, 2012 I would go to a better sleep clinic. I only slept for about 2 1/2 to 3 hours the first night, because I didn't take the ambien they offered, (I was already on clonazepam, so I thought that would be enough), then I had a second night, because they said it wasn't enough to fully evaluate me. I think I only had 2 episodes of REM sleep, 92 arousals, 64 hypopneas (small irregular breaths), and 15 apneas. That was why I was constantly tired, falling asleep sitting up during the day, and just plain exhausted ALL the time!! I am so glad they did a second night, because then I was also fitted properly with a full mask (I'm a mouth breather), and one that fits my small face, too! I went to the Sleep Disorder Center of Alabama in Birmingham, Dr. Adams. They are affiliated with UAB. They check for all kinds of sleep problems, not just apnea, so that you are evaluated well. They even measured my O2 levels, movements, checked for heart arrythmias, seizures, nasal pressure, snoring, etc. It was very thorough. They were able to determine my Cpap pressure this way. I would definitely recommend doing this. Joy, Kim Quote Link to comment Share on other sites More sharing options...
Lenna Posted January 24, 2012 Author Report Share Posted January 24, 2012 Thanks for your replies. I'll let you know how it goes for Danny. Quote Link to comment Share on other sites More sharing options...
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