I've recently developed yet another very disturbing symptom. Even after getting normal hours of sleep plus some I can't wake up.
Three alarm clocks scattered around the room, my cell phone set as an alarm, and someone calling me to get me up and still nothing.
My husband is practically having to grab a leg and drag me out of bed. I'm convinced if he did that and I fell on the floor I'd just go back to sleep.
Has/Is anyone else dealing with this? What has helped you. I'm at a loss. Everything we've tried has failed.
Posted by sutherngrl (Member # 16270) on :
A symptom of brain swelling maybe. I had encephalitis and I couldn't stay awake.
All lymies have some degree of brain swelling.
I'm sure others will have some other ideas.
Posted by sparkle7 (Member # 10397) on :
Yes. I am like this. I had Chronic Fatigue Syndrome when I was in my 20s (about 20 years ago).
It's part of the whole picture of Lyme, etc. for some. It's not fun. I don't really know what to say to help. I'm still dealing with it after all of these years. It's been worse lately for me for some reason.
You have to try to eat well, take vitamins & get alot of sleep. Hopefully, it will pass.
PS - some think it may be adrenal fatigue but I don't know. It could be hormonal or from some other reason. It's hard to tell what causes it. There are many illnesses with fatigue as a symptom.
Posted by Rumigirl (Member # 15091) on :
Wowee, sounds like it's time to contact your LLMD. Never a dull moment, huh? Or, as I am fond of saying, ALWAYS a dull moment!
You're treating now, right? Has your treatment changed? Maybe your blood pressure is really low, or your adrenals are surely low, etc., etc. Lots to check out. Or the oxygen isn't getting to your brain properly---Babesia or circulation?? Talk to your LLMD.
Posted by Hoosiers51 (Member # 15759) on :
I have the same problem, and it was at it's worst at the very beginning of my illness.
It would be TERRIBLE....my mom would call and call and call and I wouldn't ever hear it, and she would always worry something had happened to me, so she would call the neighbors to check on me.
I still have it to an extent...who am I kidding....to a large extent. Sometimes I'll set like 3 alarms, and I'll get up and turn them off and go back to sleep, but have no memory of it. So even if I was getting married that day, I'd probably miss the wedding and never know. It's not for lack of discipline.
So if I need to get up at a certain time, I need a person to physically come into my room and shake me, etc.
I think it is something messed up in the brain...my doctor was inferring that to me recently. Like the pituitary, etc...something regulating sleep/wake. And whatever is wrong in the brain, it's probably as a result of Lyme or another infection, like a coinfection.
Sigh.
I heard from someone TMG (trimethylglycine) helped them get up in the mornings, so I may try that at some point.
I feel like this issue is at the core of why I'm still sick...like if I correct whatever's causing this, I would probably find that I'm doing tons better, even when I'm up.
Posted by Hoosiers51 (Member # 15759) on :
ps--about the adrenals...pituitary regulates adrenals, so adrenal issues are probably a symptom of whatever the greater problem is. My doctor thinks it's higher up the totem pole from the adrenals...it's what's regulating the adrenals that is messed up. The whole "HPA axis" thing.
Posted by motownlyme (Member # 11485) on :
Thanks guys - lots of things to think about. We've tried checking my BP - it's a little low, but not crazy low like it is late at night before bed.
We've check blood sugar to make sure that is ok -it's in the 70s.
My LLMD seems to think it is the whole HPA axis thing that Hoosiers discusses.
My husband will try to wake me up and I'm actually dreaming that I'm in the shower getting ready for work and will tell him to leave me alone I'm showering.
I too will get up and shut the alarms off and not remember it. Once I even shut one alarm off and just sat down on the floor next to the clock and fell asleep against the wall.
Posted by Hoosiers51 (Member # 15759) on :
Does anyone else here have this?
I would be interested to know how common this is in people with Lyme/co's.
It has always been something I've found really disturbing.
It's exactly how you describe it, motownlyme. Except I don't have those dreams that I'm doing something. I think a lot of times I'll mumble something like, "Let me sleep." But I normally don't remember doing that. It usually takes a couple attempts of my husband coming into the room to get me up.
Sometimes when I'm doing better, it isn't too bad. But other times it's really bad. It's hard to know when it'll be bad, so if I have an appointment or something, I like having someone here to get me up.
Posted by Hoosiers51 (Member # 15759) on :
ps--motown, do you also have a messed up circadian rhythm?
I'm thinking these morning issues could be linked to the fact that my internal clock is messed up. Like it's hard for me to go to bed at the same time as everyone else. It's not insomnia, because I can sleep 14 hours.... it's just that I'm not tired at the "normal" time at night.
Do you tend to have issues with not getting tired in the evenings like "normal," healthy people do?
Even with going to bed really late, you'd think that once I got "enough" sleep, like 12 hours, I'd be easy to wake up, but I'm not. So it's almost like sometimes my ability to "wake" is just turned off, no matter how much sleep I get.
Posted by motownlyme (Member # 11485) on :
Hoosier - exactly!!!You are writing exactly what I'm feeling and experiencing. When my husband is winding down that is when I'm getting probably the most mental clarity for the whole day.
I feel like that is when I need to use that time to do things that are usually hard to do like pay bills etc. and once I get started I don't stop until I literally fall asleep mid task.
I'm going to let myself sleep until I wake up naturally tomorrow. Then I'm going to try and set a new rhythm by moving my bedtime back a half an hour at a time.
LLMD and GP are all for doing a sleep study. We'll see where that goes. Have you ever done one?
Posted by knshore (Member # 13451) on :
I have this and it's gotten a lot worse the past few weeks and months. I sleep about 14 hours on average and still cannot wake up in the "mornings" (closer to 2 or 3 pm).
I am really anemic and the more anemic I get the worse this gets, so you both may want to get a full iron work up because you can be iron deficient and NOT anemic (yet) and it won't show on a CBC.
I also have had this before I was anemic and it was Lyme related. I can sleep like a crazy person! Add the fact that I'm 19 and forget it!!!
I am on a modified bed rest right now, so it doesn't worry me all that much. I just have no energy and sleep a lot.
My LLMD knows about it so we're treating aggressively...2 IV abx/day and tons of orals.
I don't know if any of that helps...if nothing else, you both aren't alone!
Posted by Hoosiers51 (Member # 15759) on :
Thansk knshore. Hope yours gets better.
motown--Nope, never done a sleep study. I have been thinking I probably should eventually though.
Knshore's first two sentences is me....I can very often sleep more than 12 hours (14 hours does happen), and I'm normally not up until mid-afternoon. Lately I've been up even later, like 4-5 PM. Yikes!!!! That is the worst I've ever been with sleep schedule...getting up after 5 PM.
Motown, another thing I'm considering trying is moving my sleep time FORWARDS, like 5 AM, 6 AM, 7 AM, etc etc until I get to 10 or 11 PM, then stopping. (so it would take about 17 days total, or you could move it up by 2 hours and it would take about 8 days). That is an option if knocking the time back doesn't work. (I have tried going backwards, and it's not something I can do).
Type "chronotherapy" into Wikipedia. That is basically what I'm describing doing as an alternative.
My doctor is planning on running some more testing on me (checking things like urine melatonin), and give me some supplements for hormones, but if that stuff doesn't work, I'm thinking of doing the chronotherapy thing.
Posted by Rumigirl (Member # 15091) on :
motown,
Maybe you really need to be not working now and resting more! I don't know if that is really an option, but it sounds like your body is screaming for it! Hoosiers, too.
And, on the circadian rhythm being off---I have the same darned thing! I can't get going in the day to save my life, but late at night, I come alive! And can't/don't go to bed 'til really late---then sleep late. It's all screwed up. And I can't seem to change it. Errrghh!!
Posted by viva (Member # 8183) on :
Motown,
This may not be relevant, but here's another possible angle.
When my husband has terrible difficulty getting up in the morning, it seems related to toxins building up overnight. Doing something to detox as close as possible to bedtime, and then first thing in the morning, seems to help him with this.
Just my 2 cents!
viva
Posted by canefan17 (Member # 22149) on :
Cortisol saliva test.
Fix Adrenals.
Celebrate your new life.
Posted by cactus (Member # 7347) on :
Wow - I should show this post to my husband. I'm sure he used to fantasize about dragging me out of bed by the leg!
Seriously - if we had an early morning doc appt, he would stress for a week about how he was going to drag me out of bed to get me there.
(Oh, and by early morning, I mean a 10:00 am appt!)
I'm still not a morning person - but can get out of bed now and feel relatively decent.
This all turned around when we did a series cortisol saliva tests -
Well, let me back up and say that first we found out I had thyroid issues and got those under control -
Then we checked on the adrenals.
We used Diagnos-Techs, and the chart that they send you with your results was an eye-opener.
My morning cortisol was way below normal - I mean zip, nada, zero..
By 10 pm I had gotten up almost to the low normal range (which explained why I couldn't sleep at night).
So we slowly addressed the adrenal issue.
Then - I had an episode of pancreatitis - and couldn't recover.
Every forward stride we'd gained disappeared.
At that point, LLMD figured out that I had gone into complete adrenal insufficiency (beyond fatigue), upped the adrenal meds and added florinef.
Woweeee!
All of a sudden - I could wake up in the mornings. I didn't need sleep meds.
It was like something clicked, and boom - at 10 pm I was sleepy, and at 9 am, I was waking up.
Not sure any of this long story will help anyone, but maybe it will spark some ideas...
Posted by motownlyme (Member # 11485) on :
Thank you everyone. So much info I don't know where to start but all of it is great! It's good to hear of others who have had this and have gotten better. Sometimes I think we beat the beast one symptom at a time!