Could You Be Sleep Deprived?

[looneymom]

Hello Everyone,

I know the topic of being able to sleep has come up quite often on the forum. My son is still sleeping through the night but some of his other symptoms like his headache and tremors have not subsided. The cardiologist and neurologist suspect these symptoms may be related to being sleep deprived or sleep deficiency. I have thought about this more and decided to do some more research online. There is a great deal of information about being sleep deprived and sleep deficiency and how it affects the body. I was amazed at what I learned and it got me to thinking about the three month period when my son was able to walk and stand. His POTS symptoms did not all go away. However, his headache did and he was less super sensitive to touch. He was also sleeping through the night. I feel like lack of sleep may be the cause of some of Tyler's other symptoms. Only time will tell. If this is the case, when his body catches up on sleep, some of these symptoms should subside or get better. I would like to encourage you to visit with a doctor about this symptom because it can become dangerous if it goes on too long. Hope everyone is having a good day and hope this post will help someone.

Rachel

[Katybug]

Rachel,

I have sleep architecture problems that I am currently working on with a sleep specialist. Did you see the paper that I had read and Alex had posted for us about a month ago regarding Alpha Delta Sleep Syndrome in POTS patients? The study found that in POTS patients, they found that alpha waves (awake brain waves) interrupted our delta wave (restorative sleep wave) sleep often causing severe fatigue, hypersomnia, etc. We think that's part of my problem....of the sleep I get, only 20% is restorative sleep but in a normal person 50%+ would be restorative sleep. If we can shift this percentage so the quality of my sleep is better, we are hoping it will help my other symptoms.

[lejones1]

Thanks for sharing, looneymom, that's so interesting! How are you addressing your son's sleep issues? You say he's sleeping through the night but still may be sleep deprived?

Personally, I've had a very similar experience to what you describe. Definite correlation between sleep quality and all my other symptoms (I also get severe headaches and touch sensitivity during bad periods.) Trouble sleeping is one of my first signs of an oncoming "crash" but I can't figure how fix it. It seems to be a side effect of something else rather than an inherent cause, I just can't figure out what that something else is! Did your son's doctors suggest any causes of sleep deficiency?

[MomtoGiuliana]

For me there is a strong correlation between poor sleep and increased symptoms. My symptoms were at their absolute worst in the months after my daughter was born and lack of sleep was of course part of that. But since then as well, when I do not sleep well, my symptoms are almost always worse.

[bellgirl]

Has Tyler had a sleep study? I would talk with your doctor about it. I had tremors, too, and since I was diagnosed with sleep apnea, and sleep with a Cpap machine, I'm so much better. I also had a lot of morning headaches that went away.

[Chaos]

Katybug- Would you be willing to describe what you are doing to work on the sleep architecture problems you are having?

I had a sleep study done that was read as "normal" because I didn't have sleep apnea. It did note delayed sleep onset. it didn't mention that I only had 2 REM cycles and was awake for 60 minutes between them and had to take 2 doses of ambien to get to sleep (still took 70 minutes to fall asleep). Didn't say anything about alpha or delta sleep. So if you are getting a sleep study done, it needs to be done by someone worthwhile. The only reason I got as much info as I did was because of tips from others on here and insisting that I see the full report and not just the doctor's assessment.

I was telling docs for over 2 years that I was only sleeping at best 3 hours a night and I thought that was a big part of my problem. My sleep issues started the night I "got sick" and went on from there. Very frustrating when they wouldn't listen but yes, I believe that sleep problems are a big part of the issue. I don't think they are necessarily the cause of POTS but they certainly don't help it.

[AshleyPooh]

I know I have terrible sleep, even when i do sleep all the way through the night. Multiple people have commented that I make strange sounds during my sleep, and I have often noticed that if I don't wake up periodically, I actually feel worse than if i'd slept all the way through! This leads me to believe it could possibly be oxygen related. The theory I have is that my body is not getting enough O2 during sleep, so it wakes me up to sort of ' refill' as it were. On nights I sleep all the way through, I usually feel like I was hit by a bus.

A lose/lose situation. Definitely going to ask about a sleep study though

[Charlotte1]

Ugh.. I wish I could remember which video I recently saw where it talked about similar problems to what Chaos has had. It seems many of the sleep clinics aren't interpreting the info. correctly or when they do, they don't think its significant or relevant to remark on! Usually very abnormal sleep patterns are reported as 'normal'. Apparently its important to go to the 'right' clinic but which those are, I don't know. Neurology based ones versus pulmonary perhaps ? Often clinics are only concerned about apnea.

The video mentioned that some home sleep monitors have the ability to catch abnormal sleep patterns and record them for presenting to your doctor!

Apparently, Dr. Pocinki liked the Zoe model but although you can still buy units, there isn't customer service affiliated w it anymore so I'm not too excited about that.

Anybody familiar with the sleep tracker unit (wrist watch)?

[Charlotte1]

AshleyPooh - I have the exact opposite comments. People think I'm dead when I sleep! I have had recordings of a pulse in the low 30's when sleeping so its no wonder...I agree that oxygen deprivation is likely related.

For me, falling asleep and staying asleep can only be accomplished with drugs. Then like you, I feel like I need another nights sleep upon waking. Yep, lose/lose.

I'm not going to for a sleep study until I learn exactly what it is that doctors such as Pocinki list what exactly they want recorded. Then I'll see if my general practitioner will refer me... not likely.

[Charlotte1]

Ugh.. sorry, ZEO not Zoe. The company says it may start up again in the future.

[Katybug]

Chaos,

This doc is really cool but she warned me that she likes to take it slow and avoid sleep meds if possible which works for me because sleep meds give me full fledged night terrors. So, the first thing we are working on is getting my clock reset as circadian rhythm is screwed up. I started out at my first appointment with her not being able to get up and function until around noon (8 got up at 8 to feed the dog and then right back to bed.). I wasn't able to fall asleep until 3:30 - 4:30 in the morning. I also had 1-2 naps 1-2 hours each in between. We have now backed up my fall asleep time to 1:30-2 and my get up and function time to 10:30 with less napping.

She had me work on this after the first visit:

- I was not to use my bed for anything but sleeping. (No reading, TV watching, etc.)

- No electronics after 10 pm to avoid blue light in my eyes

- Quiet activities in dim soft light like reading paper books, listening to soft music, magazines after 10 pm. No cleaning, exercise.

- When I feel tired, go to bed. If I'm not asleep in 20 minutes, get out of bed and go back to quiet activities in soft light.

After my second visit, she also wants me to start setting an alarm so my naps are no more than 40 minutes. We will wean down to 30 and then 20 minutes if possible. She doesn't intend to cut my naps completely as she has worked with several of Dr. Francomano's eds and pots patients. She said she thinks I may need the extra sleep even if we get things back to normal with my nighttime sleep.

She is hoping that getting this accomplished and reducing nap times will be the first major steps to improving the quality of my nighttime sleep. Then, we will see what else we can do...she hasn't shared that yet.

[looneymom]

Hello Everyone,

It's been a few days since I've been on. Tyler is having a rough time with allergies. Ragweed is high right now. Tyler stopped sleeping through the night after he got the flu in January of this year. So he's gone on like this until August. In August, Tyler saw the neurologist and I let her know that he was on the regular clonidine. However, Tyler would fall asleep but not stay asleep. She put him on the extended release clonidine and he started sleeping through the night two weeks later. The cardiologist suggested that I split the Zoloft to 50mg in the morning and 50 at night. When I did that, Tyler could not sleep through the night. So I switched it back and now he is sleeping through the night again. For some reason, his body is needing these two medications in the evening. I understand the Zoloft helps the body keep the serotonin, which I know is needed for sleep. However, all I know about the Extended release clonidine is that it slows down one side of the nervous system and can cause a drowsy effect. If anyone knows of a good study on the extended release clonidine, I sure would like to read it. So far, the extended release Clonidine seems to be working and not causing any side effects.

Rachel

[looneymom]

Katybug,

It sounds like you are getting back your sleep cycle. I think that sleeping in is a good thing also. Since my son is sleeping through the night, I have been letting him do this also. I've seen research that POTS patients need more sleep due to this condition. Teenagers need 9-10 hours of sleep. I do allow him to nap but he never sleeps more than 30 or 40 minutes. I figure as long as I can keep him sleeping through the night, maybe his some of his symptoms will improve.

lejones,

I wish I knew what messed up my son's sleep cycle. The only answer I have is the flu, but I think it has something to do with his immune system. I will be visiting with the immunologist about test results Sept. 12. Hopefully will get some answers to shed some light on this matter. The extended release clonidine is the only thing that has helped with this situation.

[Katybug]

Oh...one thing I forgot...she wants the naps to be no more than 40 minutes because she said most people will fall into a REM cycle after 40 minutes and if that happens, REM sleep causes your body to start having muscle laxity. Often when then wake from a nap, and haven't completed a true sleep cycle, you feel worse because you have less muscle tone. The reason we will reduce the time from there is to try to make me more tired at bedtime so I can achieve a more normal schedule.

Rachel -Yes! I (and the doc) both think that I will require more sleep than a healthy person. Heart beating overtime, pain from eds joints and migraines, collagen that doesn't work properly to hold all my parts together....who needs sleep?! LOL!

[bellgirl]

Glad the Clonidine is extended release now for Tyler. That makes way more sense. I take mine (B/P med) in the morning, as well. It lasts for 24 hours. It's the best kind. I don't know why they aren't all that way. UAB has a great sleep clinic called the Sleep Disorders Center of Alabama in Birmingham. They test for everything. I only had 2 REM cycles, 92 arousals, and 64 hypopneas, (which I define as inadequate "mouse breaths"), just 16 apneas, but as my doctor said...."It's like being pregnant, you are not just alittle pregnant". They did EEG's, EKG's, O2 concentration, body movements, the works. There were 124 wires connected to me. It's no wonder I slept at all! Since I was already on Klonopin, I decided to refuse the Ambien, but only slept a few hours, so they had to do a second night with Ambien, too, which did the trick. I was not sleeping well at all for years...few hours, here and there. I couldn't function at all. I was literally the walking dead, so I was at my desperate point!!

[Charlotte1]

@ kimbellgirl or anyone else that knows what distinguishes a 'good, full sleep study'.-

My local sleep clinics' website states: During a full sleep study, the staff will monitor your brain wave activity, leg muscle activity, chin muscle tone, eye muscle movement, heart function, breathing patterns, and blood oxygen saturation. Some optional test may be done such as carbon dioxide levels. All monitoring is done by attaching small metal discs called electrodes onto the surface of the skin.

Would this be considered a decent study for someone like me who has dysautonomia (POTS is controlled now but still have many neurological and sleepy issues)?

Thanks.

[bellgirl]

Yes, I should think so, Charlotte Mine monitored abdominal, chest and leg movement, too, but I think that should be sufficient.

[Charlotte1]

Thanks, I'll be looking into it!