For over 3 years now, I wake about every 2 hours through the night. I can initially fall asleep, but with near clockwork precision, inexplicably wake about every 2 hours.
It's 4:30 AM EST and this is the second time to wake since midnight.
Over time have tried trytophan, valerian, kava, lavender, gaba and perhaps other things except for rx sleep help and nothing works.
Apart from these broken sleep cycles I suffer from burning skin neuropathy. I sometimes wake with the burning, but it oftens starts after waking. During the day I experience the neuropathy almost all day long.
We all need sleep and this has happened for almost 3 years apart from about every 4th or 5th night where I might get about 4 hours straight.
Needless to say, it's maddening.
Thanks Posted by Florence1 (Member # 22960) on :
out of the blue last january I started to have sleep problems....same as you every couple of hours awake throughout the night, then have a decent night out of exhaustion, my dr tried neurontin with no help....then changed to trazadone, i have gone from 50mg to 75mg to 100mg and now 150mg, it does help alot but even now I wake easily then cannot get back to sleep.....just seems to be one of my biggest symptoms.....I also have really vivid dremas that wake me.....I hope this will get better with treatment as it is exhausting never having real restorative sleep...
Posted by xoxoxox (Member # 18778) on :
That is similar to my experience. Four years ago, I started having sleep difficulties too. It was my first real Lyme symptom. For me, it was like I could never really get past the twilight stage of sleep. I suffered through it for about nine months because I was afraid to ask my doctor for a sleep aid.
I did try things like Melatonin and Tylenol PM, etc. all which would help me go sleep but I still repeatedly woke throughout the night. It turned me into a bit of a zombie. Finally out of desperation, I saw my regular PCP and she prescribed AmbienCR. She's allowed me to stay on it for the more than three years now.
I know it's not for everyone but it has been a godsend for me. It's allowed me to get the rest my body & brain need to function the next day.
Two other things worth mentioning are having a sleep study done and testing your adrenals. The sleep study doctor may be Lyme-ignorant but at least you would have documentation of your brain function during sleep and that can often be another piece to the puzzle. And although some think it is impossible to accurately test adrenals, my test was right on target with how I felt. It showed excessively high epinephrine levels late at night, keeping me in a heightened state when my brain should be calming down and resting.
Good luck with your insomnia. It is such a vicious symptom and can make all the other symptoms that much more intense.
Posted by canefan17 (Member # 22149) on :
ADRENALS
^^^ Support these guys and thank me later.
Posted by keltyl (Member # 14050) on :
xoxo...How did they test your hormone levels during the night?
I've had a sleep study done, actually two. But the only thing they looked for is apnea and restless leg syndrome. When I asked, he did tell me I never got into the deep sleep stage.
Posted by canefan17 (Member # 22149) on :
Your adrenals produce hormones from around 1-4am when you sleep.
If you aren't getting deep enough sleep the hormones will be sparse.
Or if you aren't even sleeping at those times then you can fully expect a drop in hormone production/thyroid activity.
Posted by xoxoxox (Member # 18778) on :
keltyl - they didn't test my adrenals during the night. The tests had four or five points during throughout a day that were tested. One point was just before bed and another was first thing in the morning. Many other adrenals were way out of whack too - GABA, Serotonin, PEA, & Cortisol. It was very interesting because my doctor provided me with articles for each detailing what happens when it's too high or too low, causes, and ways to improve.
Posted by keltyl (Member # 14050) on :
Hey thanks. My cortisol level first thing in am is high. My LD wants me to go to an endo that is 4.5 hr drive. I think this could put some of the pieces of the puzzle together (like insomnia), but just not up to that drive yet.
Posted by Beachinit (Member # 21040) on :
natural aldosterone in licorice tea may solve night-time wake up call. helped me. need to watch b/p and potassium. supports adrenals, contains natural salicylates for pain, antiviral for HSV (60+% of us have this for life) and antibacterial properties as well. Not a panacea though but can now sleep 5 hrs staight thru every night previously 2-2.5 hrs then another wake up call.
Hope you find what works for you.
beachinit
Posted by nefferdun (Member # 20157) on :
I have insomnia since age 12 due to hormone imbalances. I have tried everything - drugs, herbs, amino acids etc. What really helps me is the herb corydalis root which you can order from 1st chinese herbs.com. It is relatively cheap. I take two when I cannot sleep.
However the lyme brings up what you are describing which is waking every few hours throughout the night, often a minute or two before a hot flash. It seems my body knows that this is going to happen before it happens. It is strange. Perhaps adrenal support would help this.
Canefan17, what do you use for adrenal support? I think I was given ashwaganda. Does DHEA help with it?
Posted by canefan17 (Member # 22149) on :
Adaptocrine K2 Pantothenic Acid B5 Vit C with bioflavanoids Ashwaganda
Adrenal supplementation solved 3/4 of my symptoms (which I wrote off as Lyme)
I blamed so any things on Lyme and herx reactions when reality is... my adrenals were EXHAUSTED and it caused symptoms ranging from insomnia to muscle aches (lower back)
These things have all corrected themselves and they only flareup when I'm taking heavy meds (drains the adrenals)
I also do a good job of eating 6 meals/day and doing so at the right times to support our circadian rhythm.
9am - breakfast 11am - snack 1pm - lunch 3:30pm - snack 6pm - dinner 9pm - snack (protein meal - helps with blood sugar control during sleep)
Posted by MBB3 (Member # 13459) on :
Thanks for the tips everyone
I really am mostly burdened by the neuropathy, however if I could sleep for more than a few hours, I suppose I could cope a little better and perhaps heal as well?
Will seek our the corydalis (not available locally) and Adaptocrine and licorice tea.
Thanks again, MBB3
Posted by MariaA (Member # 9128) on :
wow, that sounds like a 'chicken or the egg' problem. I think there's a lot of evidence of a connection between pain and sleep, at least for fibromyalgia patients (and some of them are probably Lyme cases). it's something like if you don't get deep enough sleep, you can suffer worse pain, and in your case, it sounds like the pain might be waking you up.
Anyway, there are a few pharmaceuticals that can put you into Stage IV sleep, though they're not meant specificaly for that purpose. I use tiny doses of Klonopin for that (like a 1/4 of a regular dose).
Posted by Lymetoo (Member # 743) on :
I would try neurtontin first since you have neuropathy.
I take trazodone, ambien and melatonin. Usually works well.
Posted by canefan17 (Member # 22149) on :
Lymetoo,
Not tryin to hate... but that can't be good taking Ambien, Trazadone, and melatonin for long periods of time (assuming thats how you supplement them)
I know desperate times call for desperate measures... and I prolly should butt-out : )
But I'm just curious/concerned I guess you could say.
Posted by laceyj (Member # 13862) on :
an interesting thing has helped me get some sleep but i just started using it
i have tried all the meds, and herbs, they wont work for more then one night or so
anyways, 2 things, i recently just purchased a SunAncon original chi machine, i know the machine just jiggles you around, but it does much more, it relaxes you to sleep, first time ever I could sleep! Start very slow at 2 minutes and dont buy an imitation. It doesnt help me sleep every night but I've gotten more sleep this way then any other way. So I'll take it! Besides has other oxygen benefits.
also if you know of an accupuncturist ask them to teach you the moxibustion technique where they burn the stick over points, i burn the stick near my kidneys, and bottom of feet, and kidney points, cause if kidneys are weak so is everything else. Be careful not to burn yourself or start a fire! You have to do it outside cause the smell is bad. But it relaxes me alot and clears my head. I usually have my husband do it for me.
anyways, had to give my suggestions cause the insomnia i have is so resistant and yes maddening!
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