posted
When I am in what I call a flare I need about 10 hours per night plus 1-2 hour nap during the day.
But even when I am feeling "well" ( I have episodes where I feel almost 90% well for sometimes 4-5 weeks at a time) I still need to sleep 9-10 hours per night. I've been this way forever.
How I would love to only need 7-8 hrs like most people.
Just curious if you all have to sleep alot too?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
I don't even KNOW how much sleep I need........I'm a C-R-A-Z-Y person today.
I had a sleep study last night -------- went to sleep a little after 10:00pm (according to a peak at their records...) and then at 4:30AM they came in, turned on those 2 bright fluorescent lights and said "Good Morning!!"
I asked them what time it was, and that's how I knew it was 4:30am! I said WHY are you waking me up at 4:30???????
They informed me that they only needed around 4 - 5 hours of recording my sleep to get the info they needed for the 1st night of the study.
I was flabbergasted! The last sleep study I did was 2 years ago at a different facility, and they woke me up by slightly opening the blinds, asking me if I was ready to get up, and then letting me sleep in a little more.
At the 1st place, I slept until about 8:30am and got up on my own. I'm STILL wondering what the hell happened to me this morning at 4:30am.
I think they scared the sh!t out of me or something. Anyway, I'm shaking, sore and wiped out ----- even though I came home and went back to sleep.
I know I only drifted in and out of Stage 1 and 2, (again, after peaking at their records.) Anyway, I've got to go wash the goop out of my hair and see if I can go to this wedding today with my husband. Great!
So, I've got no answer to your question except that I need MORE sleep than I got last night!!!!! By the way, the last sleep study I had done ALSO showed me only getting into Stages 1 and 2.
The CPAP machines DON'T work for me. They make my sleeping time worse and YES, I've given them a chance!
I'm not a very pleasant person today, can you tell?
I'm getting in the shower. Maybe I'll wash some of this yucky mood off of me!
Take care, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Listen to your body. When I was as the worst, I sleep 16 hours a day - in 3 or 4 shifts. My body needed that. Healing a brain, growing new cells, takes a lot of work.
Regardless of your state of wellness, If you need 9-10 hours, get 9-10 hours. Of course, be sure nutrition is all in place and adrenal support, too. You may have had some measure of adrenal dysfunction all along.
A stressed liver can cause a wide range of sleep disruptions such as insomnia, restless sleep and the need for more.
Now is a good time double check that but - still - get sleep if you need it. Even with just HHV-6 (ever if there were no other infections), the need for more sleep is highly understandable. It's how we heal. -
[ 03-13-2010, 02:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Terri- That sounds horrible! Why in the heck would they wake up sleep deprived people at 430? I've never done a sleep study but often wondered if I should. I don't think I get that deep sleep very often.
I'll be sure and talk to you if I have one done because I don't want to go to that place!
Hope you feel better soon!
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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posted
I just recently got to the point where I only need 7-8 hours. Up till a couple months ago, I needed 9-11 hours all the time. I've been off abx since Sept. 2008.
When I was sick, there were days I needed way more than normal amounts of sleep!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I try to allow myself to sleep as much as I want to, which means if I'm good, i go to bed at 8:30 pm. I usually wake up around 6:30 on my own, because the lights come on outside!
Don't know what's going to happen with the time change. I probably will be late to work every day...
I wish they would just leave the time alone, where it's at right now. The light in the evenings, after work, makes all the difference in the world to me.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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And I also agree about the time change. It's doing a number on me!
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I'm jealous of all you guys getting all that sleep!
I thought insomnia was a top symptom of lyme disease.
Never would have thought I wouldn't be able to sleep. Even when I am about to collapse from exhaustion I still can't sleep.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I agree-envious of those who can sleep and have an escape to the misery! I'd trade in heartbeat.
Posts: 200 | From New England | Registered: Dec 2009
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posted
All I know is that I need more QUALITY sleep than I get. I did a sleep study 2 years ago and it showed that I only got to Stages 1 and 2 of sleep!
I peaked at the page that was under something I was signing at 4:30 am, and saw that I was still doing the same thing.
Apparently they recorded me as only going in and out of Stages 1 and 2 AGAIN! Maybe if they had let me sleep longer, I would have gone into Stages 3 and 4.........who knows?
I questioned them about the brief period of time they let me sleep and I was told that they only needed about 5 or so hours of me sleeping to see the pattern. Huh?
Anyway, I know that by the end of the week I should have the report from the doctor. I will have to go 2 more times before the study is complete.
Can't wait for them to wire me up again and pull all my hair out when they take out those damn electrodes. I'm gonna be bald. That really irks me!
We'll see what happens...........I may yank THEIR hair out due to sleep deprivation! Ha, ha!
C-ya, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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posted
When I was ill, I did have terrible insomnia. My LLMD tried several protocols until we found one that worked (Lunesta + Lyrica). Prior to that I needed sleep, was plenty tired, but couldn't sleep at all.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I used to need 9 hours and 10-11 with pms. Since lyme, I have no idea. I am tired all the time and never seem to feel well rested.
Posts: 319 | From nj | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i stay tired all the time and cna't sleep no matter what i take.
i get anywhere from 2-4 hours per night and then during the day around 2-4 i get very tired.
i've given up as nothing seems to work.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I could sleep all day if it were possible. I have to force myself to get out of bed before my daughter gets home from school at 2:30. If not for her I don't think I'd ever get out of bed. Even with all that sleep, I feel exhausted all day. Like I'd been up all night. I hardly get anything done during the day becuase I'm too tired. I feel like I sleep good when I'm sleeping.
Posts: 48 | From Eden Prairie, MN | Registered: Feb 2010
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