Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
When I first got sick (very sudden onset), I was sleeping literally 14 hours a day at least, straight, without waking up at all. Some days it was more like 16.
Positive in bloodwork for Lyme, babesia duncani, bartonella, mysocplasma pneumoniae.
Nowadays, thanks to treatment, I'm doing somewhat better. Most of my Lyme symptoms are gone, including my psych symptoms and my brain fog, my headaches, balance issues. Never had much joint pain/muscle soreness unless I was herxing.
But someone had a topic on here a couple months ago, something like, "how many hours do you sleep per night?" And I was SHOCKED when I was reading it.
A lot of Lymies complain of fatigue, so I thought everyone slept as much as me, but I guess that's not the case? I am not just fatigued, I am drowsy even when awake, and when my alarm goes off and I am not ready to get up, I don't even hear it. It is like I'm in a coma.
So anyways, right now I'm sleeping about 11 hours a night, but it can go up to about 13. Of course I never wake up feeling refreshed. But the kicker is that I thought that was good!
I am starting to think I'm unusual among Lymies? It is worrying me.
I am definitely investigating that the "hypersomnia" (sleeping too much) could be something besides Lyme. Getting a sleep test as soon as possible.
But barring whatever the sleep specialist says....how many people with LYME/cos' really have this problem where they sleep like a rock for 11-12 hours?
I will talk to Lymies that say they do, but then they will say it's only during herxes, or it's like half the time. Well, that doesn't make me feel any better, because I am like this everyday. (note: I think not sleeping would suck too, so I'm not trying to downplay what others go through, but I'm trying to stay focused on the issue)
It is pretty impossible for me to sleep less than 8 hours without stimulants and someone literally shaking me every couple minutes to get me up. Even with phone calls, loud alarms, I turn them off and get back in bed and don't recall that the next day.
So I guess I'm just wondering if this can be due to Lyme or an infection, or if it's something else like a sleep issue, brain issue, hormone issue (have ruled most of that out though), etc?
When people tell me, "oh, an infection can do that to you," I don't take much comfort in that, because I rarely meet other Lymies that sleep this much. And I know some people say, "I would if I could...." but seriously, if you saw how hard it was to wake me, it's pretty scary. So I am still not comforted by the "I would if I could." I guess my point is I do, and that is the scary part.
Is this making any sense? It's just really starting to bother me. If I find anyone else like this, I'll feel better. I am having my moment of worry, and I need perspective.
The thing that bothers me is that when you say, "I used to sleep 16 hours a day," people think you mean *sometimes* you would. But to give you perspective, that is going to bed at 11 PM and not getting up till 3 PM the next day, EVERYDAY, for like weeks and weeks upon weeks, despite setting alarms and sleeping through them every morning.
And even now, I feel like when I talk to people, they'll go through phases where they sleep 11 or 12 hours, but if it's everyday....what does that mean?
Posts: 4590 | From Midwest | Registered: Jun 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Hoosiers,
Do yourself a favor and SAVE YOUR MONEY.
You don't need a sleep test. You don't have hypersomnia(a made up illness)
You have Lyme disease and subsequently adrenal fatigue and hormonal imbalance.
When you figure out how to get your circadian rhythm on track and control cortisol levels... you're on your way to 8 solid hrs of sleep being enough.
And trust me... i've been there.
I battled insomnia for 10+ yrs (I'm 26) And until I educated myself and met a few great natural doctors... I would have never fixed the problem.
If you get a sleep test it is going to tell you the same thing a 24-hour saliva cortisol test would show....
Your system is WHACKED OUT
*And I know you've seen my threads on adrenal stress and my success story with sleep. (As I climb into bed)
: )
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
So did you used to sleep for a long time straight? Like 12 plus hours a night?
Or did you just sleep normal amounts but have trouble falling asleep?
I got a hormone adrenal test and it didn't look too bad. Most of the adrenal supps I've tried in the past haven't helped me.
But I am considering following your protocol exactly since it seemed to help you so much.
Thanks for responding. Hope my post is not too "woe is me"...but I am just getting frustrated and discouraged and needed to express some of it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
No, your post is fine. I actually feel for you. i was there once.
Did I used to sleep for a long time? haha
Boy did I.
In college, at the dorms, I went to bed every night around 6-7am! and woke up at 3pm, 4pm, 5pm, sometimes 6 or 7pm.
How ridiculous is that??!!!
I never knew why. My roommate (and best friend) thought I was going through depression. But I really wasn't depressed... just always tired.
Some symptoms of depression naturally sank in yrs later though when the habit continued.
It was a very sad, sad time in my life.
You feel worthless sleeping all day. But it's addicting like anything else.
I set my alarm EVERY DAY to wake me up "on time"... but I always ended up making bargains with myself and convinced myself that i'd do it tomorrow ad next week or after the semester, etc etc.
The protocol I'm on is much more aggressive than just popping a few herbs.
But it is all natural. No synthetics or HC.
I will tell you that it was MUCH easier than i thought... once you make all the necessary lifestyle, diet, and bad habit changes.
The body is amazing at recovering. And my adrenals are still in the recovery process with a long ways to go. but getting sleep is by far the number 1 way to heal the adrenals (and body in general)
And I mean good sleep at normal hours : )
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
My supplement protocol (in order of importance)
1) Adrenal Stim and Calm Creams I take Stim at 9am, noon, 4pm I take Calm at 9am, noon, 6pm
2) Vit C + bioflavanoids (2000mg/day in dividided doses)
3) Adaptocrine (adaptogens like rhodiola, ginseng, awshwaganda, holy basil)
4) Pantothenic Acid (B5) (1000mg/day)
5) Magnesium
Diet 5-6 smaller portioned meals throughout the day Eat yourself to about 80% full Protein at every meal (or nuts... like nut butter with apple slices)
Protein snack before bed is a must.(avoid cortisol spike at 4am!) Because if you suffer from adrenal exhaustion at all... hypoglycemia is an added bonus in almost every case. (awesome, right? *rolls eyes*)
Avoid food allergies as these put your body into crisis mode.
To be safe avoid gluten, wheat, dairy, sugar Read the labels: avoid dextrose, sucralose, fructose, maltodextrin, etc etc
Exercise 3-4 times per week. Dr b guideline exercising
Treat Lyme and yeast (obvious)
Some extra tidbits(if ya want)
-Water Lots of it
-Stretching and even foam rolling the body (specifically the lower back where the adrenals and kidneys sit... stimulation can help adrenals)
-Pick up a relaxing hobby reading, guitar, piano, whatever
-Don't overdo it whether its exercise, playing with kids, being out i the sun, eating, YOU NAME IT... don't overdo it
-Watch or listen to something funny atleast once or twice a day I watch seinfeld and sometimes seinfeld bloopers almost every day. i never get tired of it and it literally has me laughing outloud.
Laughing can be VERY healing
-Avoid stressors learn to be a patient driver (I've had to) learn to be patient with people
Hope this helps Can we sticky this so I don't have to type it all again later lol
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Well at least I'm not the only one. I've pretty much slept the last 3 years away. Aside from a couple of weeks at a time about twice in that period, I've slept anywhere from 12-16hrs EVERY DAY, and sometimes quite a bit more.
Not sometimes... ALL the time. And it doesn't matter whether I take the meds that help me GET to sleep or not. If I do, I sleep through the night and well into the next day. If I don't I stay awake from 36-48hr before finally crashing and THEN I sleep the 12-16hr (or more).
I don't hear alarm clocks or phones, and my hubby and I worry that I wouldn't even hear the smoke alarm! It truly is like I'm in a coma-like state.
My hubby can not even wake me up most times. He might physically pull me out of the bed, and I might come into the living room and take me meds, but inevitably I'll be back asleep within an hour, and will sleep several more hours before waking up.
I can't tell you how many of my son's allergy shots we've missed because of this...and I never make them for earlier than 2pm!
The really bad part is my hubby works overnights and sleeps during the day, so my kids (now 11 and 12) have for the most part taken care of and watched themselves most afternoons for a looooong time now. =(
I have no idea what the deal is, but my LLMD suggested at my last appt that he would like to prescribe a stimulant that my hubby would have to wake me up and make me take at a certain time to keep me from sleeping so much. The only reason he didn't is because I am on so many prescriptions already.
Sleepy Smurf
Posts: 155 | From Texas | Registered: Oct 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Smurfymom,
I suggest really considering my above protocol.
Everything you typed was ME to a T
In HS my mom tried pouring water on me to wake me up.
I would get up... turn my shower on (so she thought i was getting ready)... but i'd be in my closet sleeping
She even had my granddad (former Navy man) come over and try to get me up for school.
Impossible
I have no problem putting you guys in contact with my naturopath from Houston, TX
She does phone consults and i've even mentioned to her before that I know a lot of people that need her help lol
The supplements can add up... but your phone consult shouldnt be that expensive (and Roxanne is very good about helping out for free through email)
I email her 2 or 3 times a week with food questions ("can I have this" "can I have that")
So just PM is anybody is interested.
She was an adrenal sufferer herself at one time. She was overweight, unhealthy, etc...
Now she is a bodybuilder(all natural), in great shape, great health, and competes at bodybuilding events(whatever those are) : )
Ok, now I really need to go to sleep lol It's 1am here Gotta be up for work in 8 hrs!!!
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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I was there, buddy. I was almost fired from work several times because I was coming in late almost everyday.
Sometimes it was a little trouble to get to sleep, but once I was asleep, I was done in. I needed at LEAST 8-9 hours a night. I wouldn't wake up otherwise. Alarm clocks did squat. Friends told me they beat me with a pillow several times, I never moved. Good friends
I always felt tired about 2-3 hours after waking up and fatigue all day. I still battle a lot with this, but I have some good days now compared to everyday being a fatigue hell.
But yes, I slept like you did. Sometimes, 12 hours in a day too.. But no matter what, it was about 9 hours every night. I never had any insomnia except on a RARE occasion.
I think it's just part of the infection. I've actually been doing really well with that lately. I've been sleeping around 7-8 hours a night cause I'm unemployed right now. I try not to stress myself, and just let my body rest when it needs it.
I did a lot of spiritual and mental work when my Lyme symptoms became apart of everyday life, and that taught me to relax more when sleeping.
I think Cane's got a lot of good ideas that are worth a try.
You're OK, buddy.. Better to be sleeping 12 hours a day than only getting 3 hours a night. Ask Camber.
Posts: 829 | From MD | Registered: Dec 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
SmurfyMom, canefan, Wolfed Out,
Thanks for letting me know that you have also been through this. And I'm sorry for what you have gone through!
It is making me feel better to not be the only one. I was feeling like some kind of alien. Though I wasn't really blaming myself, because I know it's outside of my control (obviously, since I try so hard to get up and don't).
Have you all gotten a sense of how many other people with Lyme have this issue? Were you shocked, like I was, to learn that a lot of others are getting by on so much less sleep than you? It makes me question if we all even have the same disease...like, I know we do, but it makes me wonder what is wrong with us or not wrong with them (or wrong with them, etc)?
I am just having a hard time with all of it, understanding the differences. I have a hard time not getting jealous of those that get by on less sleep. Like I know a lot of them are just as tired during the day (so I'm not saying they have it better)....but I'm just jealous that I don't get up like that and that I have to be such a freak of nature (not whining, just venting). There is something about physically not being able to get up like 99.9% of humanity that is disturbing to me.
And Canefan, THANK YOU for reposting your protocol for me, or I would have had to go back and find it!
Looking forward to hearing more replies, seeing who else "gets" where I'm coming from (it is making me feel better), and most importantly, what has helped! (looking for more hope that this issue can get better, even when it's this bad).
I really want to be able to have a family some day. If this symptom doesn't get better, how would I ever get myself up to take care of a child without another adult physicially dragging me out of bed? Kind of a scary thought.
I am very grateful a lot of things have gotten better, but I worry about getting back into normal society, a normal life, if this doesn't start getting better. Because like Wolfed Out says, it is hard to have a job (or do much) being like this, never knowing when you can get up or if you will get up by a certain time.
I think when I was really sick with other symptoms, it was easier to dismiss this, but now it's bothering me more because without the other drama like the headaches and not remembering anything (both better), this just sticks out and seems strange.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoos, it's almost 3:00 am and I'm up looking at the internet. I slept all this afternoon. And when it's time to wake up in the morning, I'll feel like I'm coming to after anesthesia. And I WON'T feel refreshed.
The sleeping is crazy. On rifampin, I slept all day and all night. Sometimes I get really anxious and I'm wired all night and the next day I feel hung-over, panicy and sick all over.
I think things will change for you. I was crying in frustration earlier to night. Sleeping too much, sleeping too little. I do both. Don't worry. Sleeping is good and healing.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
My 14 yr old son with lyme does this also! He sleeps all night, on good days he goes to school, then comes home and sleeps all evening, gets up to shower and eat, then goes back to bed. He doesn't do this every day thank goodness! But he does it a lot!
Then you have my other son with lyme who can't get to sleep until 4am and lately 8am!! Then he sleeps ALL day. Lately it's been until 5pm. He's in homeschooling because of this. Tried every sleep herb you could imagine. Even been trying some adrenal gland support herbs.
Needless to say I am up all night with him. Not even sure what my body wants because I am too busy taking care of sick kids. Yes I have lyme too. But seems that I come last...sigh...
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
I usually go to bed about 10pm and most times don't have trouble falling asleep. I used to take a nap every day after work because I come home fatigued, but then I would be up until 3am after that. Lately I am trying hard to resist that temptation.
I seem to wake up every night about 3:30 or 4am--thanks Canefan, I will try the evening protein snack and see if that helps. Sometimes I stay asleep longer if I've had an epsom salt bath before bed.
Then I go back to sleep, and I NEVER want to drag myself out of bed when the alarm goes off at 6am. I have not had the coma-like feeling of not hearing the alarm, but I have ignored the radio while it droned on for 45 more minutes until I could force myself to get up.
On the weekends, I sleep about 10 hours (waking up once) at night, and then take 2 naps of 1-2 hours each during the day, and I feel much better. All my Lyme symptoms are less when I do that.
My opinion, for whatever it's worth, is that your body knows when it wants sleep, and you should let it have what it needs. I don't have a choice during the week because I have to keep working if I possibly can.
Lucky for me, I have not gotten to the point where some of you are where I physically can't fight it.
Good luck and don't add to your worry more than necessary.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Just curious how old everyone is in this thread. I'm connecting the fact that me and Canefan17 are 26-year-old males.
On the the opposite spectrum, around 3-6 years ago, I was running on hi-octane all the time. I lived a night-life lifestyle, I came in really late (on average around 2am), slept 4-6 hours on average and went to work in the morning.
That's how I was running for years. I always felt over-energized.
I've heard Lyme pumps the adrenals hard until they start to feel burned out, and then, this happened..
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Hoosiers51
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Member # 15759
posted
I am 26 too...female.
It is possible I was also pumping my adrenals too hard when I first got sick. Though believe it or not, I first got sick at 17. But I was doing things nonstop...it was insane.
Then I got kinda sorta better (up to like 40% so I was working part time), then I got a vaccine and did too much and ended up relapsing.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I also got sick between the ages of 17-19 -- I'm very sure.
I remember having a tetnus shot after slicing my foot open on a cruise when I was 21. Then it seems like things started slowly going downhill months later.
I was a nervous wreck all the time as well. I was working in sales, and I started having massive anxiety about public speaking and normal conversations that didn't used to bother me at all.
I just remember the feeling of my heart beating 100x a minute, and feeling over-pumped.
Posts: 829 | From MD | Registered: Dec 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
WolfedOut,
In many cases it's a matter of which came first the chicken or the egg?
Was it adrenal fatigue first... then Lyme? (who knows... I have my own theories)
I do believe if I had lived a more healthy lifestyle and didn't run myself down(much the way you described... out till 3am... up at 9am for work some days)... I don't think I would be dealing with Lyme.
But I do know what that over-energized feeling you were getting was.
It was your cortisol levels.
When the adrenals become worn down... in an effort to keep the body balanced and happy... they spit out a ton of cortisol throughout the day.
This is what people talk about when they say "adrenaline kicks" or "I was runnin on adrenaline"
It just means cortisol levels are really high.
It's ok for the body to do this every once in awhile (because we are all faced with fight or flight situations at some point in our life. Whether it be stress, fear, etc etc.
But most of us Lymies pushed our adrenals to the limit. And this opens the door for whatever bacterias/viruses/fungi may be lying dormant in your body.
I think A LOT of people have Lyme and it'll never sequester into a problem.
I believe my mother has lyme and gave it to me at birth. But she isn't dealing with chronic/CNS conditions of it. She is very healthy and I think, without knowing, she's kept Lyme at bay.
It's all about the immune system and your adrenals : )
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I agree, canefan! Your story sounds a lot like mine. I'm 31, born with Lyme and have had minor symptoms since early childhood, but I really crashed around 26-27yr after several years of 'runnin on adrenaline'.
My mother, on the other hand, has had minor symptoms since early childhood, but still hasn't 'crashed'. I was and am WAY sicker than she is. Funny thing is, though, she's ALWAYS only slept about 4-6hr, and oftentimes way less.
She has slept more in the last few years, but not because she needed it. Simply out of boredom. Unlike me, she's never had a problem getting to sleep. She can literally sleep anywhere (she prefers a floor and no pillow).
I, on the other hand, can remember staying up all night in jr high because I couldn't sleep. I'd finally get sleepy the next afternoon.
I'm definitely going to look into your protocol, canefan. Right now I am just taking some adrenal support from RainTree. I can't tell that it's helped much, but I do know this is an adrenal problem, for sure.
SmurfyMom, 31yo also Lyme + - my mom, 3 younger brothers, husband and two kids
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