Sleep Study Results

[Guest tearose]

Well, in a way I'm not surprised... The sleep study showed over 250 sleep arousals (measured in seconds) during my 381 minutes of sleep. I show some leg movement but not enough to be considered a disorder. This is not the same thing as "waking up" which I and most people do to a much less extent and is within normal ranges. These sleep arrousals make me come out of sleep for several seconds and then resume whatever stage of sleep I'm in. With all the "sleep fragmentation" I have, I do not get restorative sleep. This explains why I and most probably everyone with POTS experiences "brain fog"!!!

The oxygen levels were excellent too. The "fog" seems to be related to the lack continous and replenishing sleep, not at all related to lack of oxygen! This doctor cannot explain what is happening in as great a depth as I wish and supports my internists' idea to send it off to the Mayo Clinic to ask if they can further interperet it. I suggested that just like our bodies have to make adjustments for falling BP during the day, could it be my body trying to adjust to the dysautonomia during the night??? I didn't mean to stump the doctor!

Additionallly, I believe, somewhere deep inside my soul, that this is a "wake up call" (pun intended) for me to do something non-invasive to get the sleep I desperately need. I believe that if I don't, then this could progress into something worse down the line. It is just a feeling but I want to honor it and try to change my sleep quality somehow...any suggestions are appreciated. tearose

[MightyMouse]

Glad you found a possible way to get yourself feeling better.

I had a sleep study about 10 years ago--completely normal. Nina

[Merrill]

Tearose, when you say you want to try something "noninvasive," does that mean that you typically take some kind of sleep aid before bed to help you fall asleep? Are you going to try going without--to try to help yourself fall asleep and stay asleep naturally? Please say more...

In the meantime, I'm glad you found out more about yourself as a result of the test; I'll be interested to hear what Mayo has to say about it!

m

PS I take it you went w/your family to visit schools? Hope you enjoyed the journey...

[Guest tearose]

Hi mighty, did you have your sleep study at a good time or at a time when your pots was really active? I'm kinda surprised that you didn't have any of these fragements...maybe the tests are more sensitive now? Now I'm wonderin'...is it just me???

Hi merrill, yes, we did the traditional "college quest" thing and I attended info sessions and sat out the tours. I am glad I went, it makes for more interesting family memories.

I don't take any medications besides replacement estrogen in a patch, and a small dose of testerone cream applied on my lower legs. I do take vitamins. I have a very strong aversion to treating my dysautonomia with medication. Besides being sensitive to medication, I believe that this field is very new and the doctors are learning through us and our experiences with the treatments they suggest. When I say non-invasive I mean not daily medicine and not surgery. I do take tylenol or advil for aches and pains. I absolutely take an antibiotic or do surgery if really needed...but this neurological field is still a new frontier. I saw my father who they thought at the time, had parkinsons' disease, do worse on medication. He actually had type of multiple system atrophy with lewy bodies and this unfortunately can only be diagnosed accurately after it has severely progressed or upon autopsy. I think he went downhill faster after trying the daily medication... I am concerned that a similar event could happen to me. I therefore, will try to do behavior modifications to help me find my way back to stronger health and sleep. I want to trust that our bodies are able to heal and find solutions to things like this...aaah, the optimist in me is back! I'm going to try to take a warm bath every night and create a more soothing transition to sleep.

I'm open to anything! Suggestions are most welcome! tearose

[Sue]

hi tearose

My mom has always had problems sleeping since I can remember, and would never take anything. She blames this on being a mom Always listening for the baby, staying up for sleepovers, waiting for the teenager to come home, the late date nights, etc. and even though we are all on our own now she cannot find a healthy sleep pattern. recently she bought a CD player for her bedroom and she plays a cd of a soft bubbling brook, some birds chirping quietly, and some other peaceful sounds. (Bought at Target, they have others too), At first we really didn't think it would help, but it HAS!! She isn't sleeping a full eight hours but the hours that she is sleeping are sound and peaceful Just an idea, it may help

Sue

[Merrill]

Welcome back, optimist!!! Thanks for the extra info...

It must've been very scary to see what happened to your dad... I'm going to hold onto the thought that this same thing isn't going to happen to you! Join me, OK?

I have a suggestion to add to Sue's ... I had surgery last summer and bought the "surgery pack" from http://www.healthjourneys.com I highly recommend this set of meditation CDs for anyone anticipating (or healing from) surgery... But one of the disks that was part of the package is called Healthful Sleep, and you can order that separately. I just took another look at the product catalog--there are so many great choices for people like us (tho there isn't one for pots specifically; I should write them!) There are cardiac health cds, blood pressure, stress, and other related topics. Take a look!

I keep a portable CD player at my bedside and listen to the CD when I'm having trouble falling asleep. (I'm so familiar with it now that sometimes I just lie on my back and repeat the opening lines over and over, hearing her voice, and before I know it ... zzzzzzz.)

Be well,

m

[MightyMouse]

Okay, time to break out my professional side--behavior analyst: Sleep is all about routine. Keeping to that routine can help promote sleep. Routines can include music, reading, bathing, etc. Some folks also refer to "sleep hygeine". This means that in addition to keeping the routine, you keep a consistent sleep/wake time schedule, you keep the room dark and cool.

Nina

[Guest tearose]

Sue and M the cd player would be a nice addition to the ritual, thanks!

Mighty, a behavior analyst? I didn't know. So use your skills and please make something clearer for me. I usually say my "good nights", get a drink of water, wash my face, brush my teeth, put in my retainers, wrap my lymphedema arm put on my soft pj's and dive into bed. I think I fall asleep in a few minutes. ( The study showed 11mins) Isn't that a good sleeptime habit? If it is, then I wonder what else causes that many sleep arousals. Any ideas Nina?

I'm still going to create a new pattern with a longer time to get ready and time to visualize deeper sleep. Again, if anyone has been dealing with sleep study results I'd sure like to know what they found! ...It would be nice to feel well rested again, tearose

[Louby]

Hi tearose,

I'm pleased you know have your sleep study results back, I plan to request such a study from my professor. I often wake up james in the middle of the night, with jumps, long conversations and general riggling around. I also wake up shattered.

I have tried a couple of things to help me with sleep, at times i can feel so tired, yet not be able to drift of to sleep - and when i do sleep I often wake up with pain in my legs, or James reports back to me of my weird conversations at 3am.

I have discovered a sleep spray in Boots, which is a major chain of chemist here in the uk, I used to take this away with me when jet-lag may be a problem and it does seem to help. It contains a mixture of essential oils, which you spray on your Pj's, pillows and sheets - may be worth a try. I also make my own mixes of essential oil, to put into the bath, you need to be careful if your skin is delicate, and not use anything too strong. Lavender is best for sleep, and can be used on babies, so perhaps just try three drops of the pure oil (here in the UK a lot of companies mix with a base oil and claim it is pure) into your behalf, or a mild bubble bath if you like bubbles,. Another good tip, is to put 10 drops on a hanky and put on your radiator in the winter, this then fills the room, or again you could put the drops on your pillow.

Hope this of some help, and hope you are well

[migraine]

All these suggestions really make since. When I was young I could sleep for hours on end. On weekends my Mom would throw open the door at 3:00pm and say, "Are you ever going to get up today!" I'm sure that was blamed on teenage ritual, but I really needed the sleep. My junior year in highschool I skipped a combined total of 21 days of school. These were mostly mornings when my Mom would leave for work and I just couldn't get out of bed. No one seemed to believe I was only at home sleeping. At the time it was blamed on truancy, a nervous breakdown, or some type of mono.

Now that I work and have kids I'm simply not able to sleep in. I notice a huge increase in brain fog and an increase in POTs symptoms which I'm sure is also blamed on being a "Mom." One of my doctors wrote my husband. He explained that because I have restless sleep, I need more than 7 hours. I also need to take long naps on the weekends. He stressed that lack of sleep with my history could wind up turning into a stroke. That really scared me. I still have to fight for a nap, but I have learned a few tricks...

The "pattern" discussed in the above postings seems to really work. If I rush through the day, get the kids to bed, clean the house, and jump into bed I sleep horribly. If I start a little earlier, do some stretches (I don't go as far as to actually work out) take a bath, snuggle into clean sheets, I seem to get more sleep. Hope this helps.

I've also heard you cannot catch up on sleep. I disagree...If I can get a big nap in on Sunday, I find I have a much more restful sleep ahead of me during the week. Drugs just make me groggy in the morning. I think you will just have to find a routine that works and stick to it. Good luck.

[Dawg Tired]

My sleep study showed I got to sleep in 9 minutes but I had about 30 min of REM sleep and around 400 awakenings. I get aggrivated because I will go right to sleep around 10pm then wake up around midnight - and usually can't get back to sleep. I hate that!!

[Deb]

Dawg Tired you have a perfect name. I've found this chain of postings interesting because I didn't connect my terrible sleeping (or lack of) with the POTS. For as long as I can remember I have awakened several times during the night. I usually roll over and go back to sleep. And in the morning I usually felt rested. In the past year or so I've noticed that I haven't been able to sleep in past about six-thirty. I just wake up and that's it unless I had a really restless night and then I can sometimes catch another hour. But I just realized that since my POTS symptoms got worse, I wake up around midnight and then three and then five and stay awake for several minutes. And I still have all the additional times that I wake up for a few seconds at a time. I go to sleep almost right away, I just can't seem to stay asleep.

Is this something I'll have to deal with forever? Or is it one of those symptoms that comes and goes? I have to take a short nap almost everyday around nine or nine-thirty because I just can't keep my eyes open. I was hoping this was just part of the healing process after being so sick a few months ago.

Any thoughts?

[Aprilmarie52]

deb, I find that I only have sleep disturbances like that right before, during and after I am having a really bad episode with POTS. For me it usually goes way once I start feeling like myself again.

[MightyMouse]

Oh gosh, I just realized I never answered your first question about when I had my sleep study done. I've had POTS all my life, and I was in a very fatigued state during the testing...but it was also long before my correct diagnosis. The doctor really got me annoyed when he called to tell me ...and I quote: "Your test is completely normal. There is nothing wrong with you." in a patronizing tone of voice.

Sleep hygeine is also about doing those routine things at the same time every night... and there's also many reasons why your sleep my be disturbed, other than the behavioral ones. Medications and otc products can interfere with sleep, problems with breathing can interfere, napping during the day, drinking alchohol or caffeine, reflux, airway obstruction/apnea, asthma, bronchitis, thyroid disorders, mental stimulation just before bed (like playing video games), and probably many other things that I can't list here. Then there are the more organic problems, like restless leg syndrome and circadian rythym disturbances.

Bottom line: first, work on the hygeine, and if that's solid, start looking for the other probable causes. Did the sleep study doctor give you recomendations?

Nina

[Merrill]

Deb, I could have written your note! My nights are exactly like yours! (Except many days, I don't feel too rested in the morning... but the pattern is precisely the same.)

G'nite,

m

[genie]

Haven't had a sleep study, but share similar things that have been shared. I get up several times a night, usually bathroom breaks but sometimes just roll over and am awake. I have trouble sometimes getting to sleep, leg aches, can't get comfortable, can't cut of my 'thinking voice' etc.. when all else fails my doc has given me ambien that I only take occasionally. I found the first time I took it it was the best sleep I had had in a long long time. Now I'm not so sure that it's the best but it does help keep me alseep and I do wake feeling more rested but I don't like taking it so only when I've had a really bad week and find myself laying there that I'll take it? So, if all the other wonderful suggestions don't help this has work to some extent for me.