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Posted 6/3/2010 6:48 AM (GMT -8)
I have had insomnia since the beginning of my illness. I have just about given up on finding a solution since I've tried just about every medication out there with no luck. My insomnia improves with antibiotics, but I haven't had 8 hours of sleep in years. The lack of sleep is holding back my recovery, and the more sleep I lose, the worse my symptoms get.

I have a diagnoses of Lyme, babesia, and bartonella. I am on a pulsing schedule of various antibiotics.

I'm writing this all down to see if anyone else has the same problems and to see if anyone has found a solution.

My sleep problems actually change, almost on a cycle. Sometimes, I have difficulty falling asleep. I am far too wakeful at night. Other times, I fall asleep right away, but don't stay asleep. Sometimes, I wake up to frequently during the night. I never sleep all the way through the night, but sometimes I wake up a lot. I wake up at least once. Sometimes, I wake up too easily. The slightest noise wakes me up. Prior to my illness, I slept very deeply. Sometimes, I'm energized too easily. For example, I watch a little light TV in my basement before going to sleep. Then I walking upstairs to my bedroom and get ready for bed. The act of walking up the stairs and getting ready for bed makes me very alert and unable to sleep. Sometimes, I wake up too early, and can't get back to sleep. I'm still tired, but no matter what I do, I can't fall asleep again.

My sleep itself is also strange. As I fall asleep, I start to dream right away. The sights and sounds before I'm fully asleep can be unnerving and can wake me up. My dreams feel different as well, but it's hard to describe. I just don't sleep the way that I used to.

This hasn't happened lately, but it's worth mentioning. As I fell, asleep, I would have a sudden jerk, usually in one of my arms or legs. The sudden jerk would wake me up with a start and could be painful. this was more likely to happen if I tried to sleep during the day.

Speaking of napping during the day, this is an exercise in futility. I cannot sleep more than an hour, no matter how tired I am. As I fall asleep, I am awakened by what I can best describe as an electrical shock to my brain. It wakes me up with a start. It can hurt too. If it keeps happening before I fall fully asleep, it can give me a wicked headache.

I've tried sleep medications, antidepressants, anti-seizures medications, and just about anything you can name. None of it has worked. Usually, I'm just very drowsy the next day. Frequently, I get other side effects as well.

Does anyone have these same problems?
Posted 6/3/2010 8:41 AM (GMT -8)
Sleep must be a theme for me today!

It sounds like you are having cortisol spikes, which can cause the type of sleep problems that you described in your post. It is part of the problems that we can have with our adrenal glands. There is a simple saliva test that your LLMD can do to see if that is actually the case with you. If it is there are meds and nutritional supplements that you can take that will help balance that out for you so you can actually get some rest.

The other thing you can try is accupuncture. I recommend that you go to someone with training in Traditional Chinese Medicine for it, they are the ones who have the most comprehensive training in helping someone using accupuncture. They may even prescribe a medicinal tea for you to drink.

There is no reason that you have to go on dealing with this, there are a lot of things out there that you can try to help you sleep better. What I suggested is what I have done in the past either for myself of my children that has worked for us, I don't mean for you to take what I am posting as medical advice, I am not a doctor, just someone who has felt the way you described feeling.

Hope you get some sleep soon!
Posted 6/3/2010 8:53 AM (GMT -8)
@Marika - I've had my adrenal gland tested multiple times, including the saliva test, but my levels are always normal. I took a supplement for adrenal health for a while, but it didn't do anything. My doctor eventually had me stop taking it.

I've thought about looking into the magnesium angle. I'm not sure if my magnesium levels have ever been tested. My multi-vitamin and some of my supplements have magnesium, but it doesn't add up to 100% Daily RDA. I've read that Lyme can use up magnesium. I also seem to remember that magnesium deficiency can cause some of the sleep problems I've had, but that was a while back. I think that magnesium is something that can be over-dosed on more easily, like iron, so I don't want to just start taking magnesium supplements without consulting my doctor.

My doctor last prescribed Remeron. I've procrastinated about taking it because of some of the potential side-effects, including violence, panic attacks, and insomnia. It could actually make my problems worse, which would in turn make me more sick. I'm caught between a rock and a hard place here.
Posted 6/3/2010 9:33 AM (GMT -8)
I should also note that all of the products I take that have traces of magnesium are supplements that I take in the morning. I can't take them at night because they contain substances that might disrupt my sleep more. I could be low on magnesium at night.
Posted 6/3/2010 11:47 AM (GMT -8)
I've had a lot of similar sleep issues (especially the one you describe where the act of walking to bed wakes you up too much to go to sleep) and magnesium does not help me. I've tried drugs, too, and they either don't work or work too well (can't wake up the next day). Benadryl helps, but it worstens my gut motility. I've tried herbs for sleep, but can't take them close enough to bedtime to be helpful (anything in my stomach within 3-6 hours of going to bed refluxes or makes me feel sick once I go to bed - no, acid reducing meds do NOT help this, they make it worse...and I cannot take HCl because it causes intense burning pain in my stomach).

BTW, the jerking on falling asleep is Periodic Limb Movement during Sleep (PLMS). I don't know if any meds can treat this. But I would not be surprised if homeopathy could...homoepathy may also help with your other sleep issues. I've had limited success with some remedies myself (for example, if I consistantly wake up between 3-5am, I take Nux V. before going to bed and it helps me sleep through this time of the morning), but haven't really done any serious trials to find out if my other sleep issues could be resolved this way.

I also think acupuncture could be helpful for you. I cannot do acupuncture because of other issues, but when I was able to do acupuncture it was very helpful for giving me a feeling of overall wellness.

BTW, the whole "sleep hygiene" thing (consistant bedtime & wake time, no TV/computer within an hour of bedtime, etc.) has never helped me any. The biggest thing I've found to help me fall asleep is to read a bit after getting in bed - it somehow helps my brain transition from "awake" to "ready to sleep" more easily. Unfortunately, my Husband has to go to bed so much earlier than I can possibly sleep that I can't read without waking him up... It is a challenging situation.

Have you had dopamine levels tested? Too much dopamine at night can keep you from sleeping... I have one of the genetic variants that causes too much dopamine in the brain. I'm trying to figure out how to balance this but haven't really gotten into it much. I think exercise is one thing that helps with this but I'm unable to right now (too weak/fatigued).

I also wonder if 5HTP could help you. This is a variety of tryptophan, an amino acid necessary for sleep.

I've tried melatonin...it worked great the first couple nights and has never done a thing to help since.

Best of luck,
Posted 6/3/2010 1:48 PM (GMT -8)
Thanks Razzle. Benedryl used to knock me out before I got Lyme, but now, it does nothing for me except make me drowsy. I don't think that the PLMS happens anymore. I think that my current regime of abx got rid of that.

"Sleep hygiene" doesn't work for me either. I know what helps me sleep and what doesn't. I can watch TV, but I can't play a first-person shooter video game before bed. I can't take a shower too soon before bed either because that wakes me up. Everyone is different. I have trouble reading because of my Lyme brain, so that isn't much help for me.

No, I don't think that I've ever had my dopamine levels tested. My sleep problems only started with the Lyme. Would Lyme effect that?

I have been exercising, and I find that to be a great factor in my overall health, but it doesn't help with sleep. Exercise is whole subject by itself, but here's the summary. Walking is great place to start, and every doctor says that it'll improve my health, but I have found it to be insufficient. I have to get my heart rate pumping more to really see any benefit. I can jog because of the my knee, so I rid a stationary bike. Biking outside helps too, but since there's a lot of coasting, it's not as effective. It's a struggle to exercise when I don't feel well, but it really works. I only skip it if I'm too lightheaded or dizzy. I think that the increased circulation helps my abx reach more of my body, and I think it also helps to filter out the toxins that cause so much of my misery.
Posted 6/4/2010 12:08 AM (GMT -8)
Lyme messes with a lot of things. I don't know if it specifically messes with dopamine in the brain, but it would not surprise me if it did.
Posted 6/4/2010 6:02 AM (GMT -8)
My son's Lyme symptoms have been primarily neurological and his Dopamine levels were through the roof. He also was manufacturing almost zero Serotonin. That is how I learned about cortisol spikes, that is something that was going on with him that we learned about with testing that we had done on him by a nutritionist in NY that a friend told us about. He has done some pretty amazing stuff with my family as far as being able to turn around the way we were feeling on a day-in, day-out basis. I have more energy and less pain that I have had in years, my son and daughter, too.

We learned about food allergies that we didn't know we had, amino acids that were out of balance, neurotransmitter issues, all kinds of things that can be addressed with nutritional supplements and diet. It has made a huge difference in our ability to function on a daily basis. My daughter was considering dropping out of school, my son already had and I was shopping for a motorized wheel chair. Meeting this nutritionist and getting our individual issues addressed has made it so that she is able to stay in school and function at the same level as the rest of the kids her age, my son is able to hold down a job and take classes again and I am walking around and (this is a big one for me) actually able to run to my car if it's raining! I hadn't been able to do that for years!

I hope you find something than can help you and that you feel better soon,

Marika
Posted 6/7/2010 8:10 AM (GMT -8)
I realized that my protein shakes that I've been taking actually have a significant amount of magnesium. I tried for a few nights to drink some a couple of hours before I went to bed, but it did not help my insomnia at all. I'm not sure that's a really definitive test, but I would think that it would at least have had some effect, if that was my problem.

I've decided against the Remeron. I think that risk that I could fly off into a rage or something is too high. My Lyme and bart infection have already caused me massive mood swings. It took a long time for the abx to rid me of those. It's not something I care to repeat.

I'm not sure what else I can try at this point. My options seem very limited, and nothing seems to work on me.
Posted 6/7/2010 10:45 AM (GMT -8)
Magnesium works best either taken with calcium or by itself, within about an hour of going to bed.

Also, I'd suggest trying Homeopathic Medicine. There's a remedy blend called Quietude made by Boiron (I got mine at a local health food store but it is also available online) that is designed to help with a variety of sleep issues. I've had it help me, and my Husband loves this stuff for his occasional insomnia.

I hope this helps...take care,
Posted 6/7/2010 12:43 PM (GMT -8)

Razzle said...
Magnesium works best either taken with calcium or by itself, within about an hour of going to bed.

Also, I'd suggest trying Homeopathic Medicine. There's a remedy blend called Quietude made by Boiron (I got mine at a local health food store but it is also available online) that is designed to help with a variety of sleep issues. I've had it help me, and my Husband loves this stuff for his occasional insomnia.

I hope this helps...take care,

Do you mean like a magnesium supplement? I've avoided adding any more supplements without consulting my doctor because I'm already on so many things. I didn't really expect this to be a fully valid experiment. The protein shake is something I've been taking anyway because I've been exercising. I thought I'd try taking it closer to bedtime to see if it made any difference. I can't take it too close to bedtime because of acid reflux.

I'm not opposed to taking homeopathic medications, but none of the ones that I've tried have done anything for me, and they're expensive. I can't remember everything I've tried, but I've taken pills and supplements and drank tea. None of it has made a dent in my insomnia. Not even the heavy duty sedatives that I've been prescribed have worked. It's very frustrating and strange.

Thanks for your help.
Posted 6/8/2010 9:03 AM (GMT -8)
I also forgot to mention that occasionally when I'm falling asleep, I hear a loud bang or other noise in my head that wakes me up with a start. I looked it up once, but the name escapes me. It happened once last night. I'm not sure if that means anything.
Posted 6/9/2010 7:43 AM (GMT -8)
Yes, I was talking about Magnesium supplements in my post.

If the homeopathy did not help you, then either you did not take enough of it, the potency was wrong, or the remedy was not the right one for you. It can be difficult to find which specific remedy to take...that's why I like the blends sometimes because they have a bunch of remedies that deal with different aspects of the problem. I also think homeopathy is less expensive than prescriptions or most supplements...but I get mine from Super Supplements ( www.supersup.com ) or abchomeopathy.com .

Note: I have no financial connection with either of the above-mentioned websites/companies.
Posted 6/9/2010 8:55 PM (GMT -8)
Thanks for the help. I'll keep trying.

Another thing that I've noticed is that I've been feel much worse in the mornings for a while now. It's like my infection is worse or I'm herxing while I'm sleeping. I need to ask my doctor about more methods to detox. I tried what he gave me, but it didn't work on me. Drinking fluids and exercise seem to help me the most, but obviously I can't do that while I'm sleeping.

I'm debating about whether to call into my doctor's office before my next visit. The sooner I get this fixed, the better, of course, but each new treatment just ends up making me feel worse. I've come to dread it.

I feel like I'm at the point right now where the part of my brain that controls my sleep is so damaged that nothing is going to work on me. I've read posts from Lyme patients who don't even get fully knocked out by anesthesia used during surgery. YIKES! I don't have much hope that I'll resolve my sleep until I beat back my infections, but I need sleep to heal. Chicken...egg...chicken...egg.

Anyway, thanks again for your help.
Posted 6/9/2010 11:36 PM (GMT -8)
Check out http://www.drmyhill.co.uk/wiki/Category:Sleep_problems for some additional information and things to consider or discuss with your doctor.

I hope you find a solution. I'm still looking, too...
Posted 6/10/2010 1:47 PM (GMT -8)
don't know if you've tried this, but I just tried it and it's worked well for me.  liquid Melatonin that you spray under your tongue.  Ko
Posted 6/10/2010 2:47 PM (GMT -8)

KO-LD said...
don't know if you've tried this, but I just tried it and it's worked well for me. liquid Melatonin that you spray under your tongue. Ko

A doctor suggested melatonin a few years ago, but I didn't try it. I don't remember why not. I know someone who tried it who said it gave them very strange dreams.
Posted 6/14/2010 6:36 PM (GMT -8)

IH8Ticks said...
I have had insomnia since the beginning of my illness. I have just about given up on finding a solution since I've tried just about every medication out there with no luck. My insomnia improves with antibiotics, but I haven't had 8 hours of sleep in years. The lack of sleep is holding back my recovery, and the more sleep I lose, the worse my symptoms get.

I have a diagnoses of Lyme, babesia, and bartonella. I am on a pulsing schedule of various antibiotics.

I'm writing this all down to see if anyone else has the same problems and to see if anyone has found a solution.

My sleep problems actually change, almost on a cycle. Sometimes, I have difficulty falling asleep. I am far too wakeful at night. Other times, I fall asleep right away, but don't stay asleep. Sometimes, I wake up to frequently during the night. I never sleep all the way through the night, but sometimes I wake up a lot. I wake up at least once. Sometimes, I wake up too easily. The slightest noise wakes me up. Prior to my illness, I slept very deeply. Sometimes, I'm energized too easily. For example, I watch a little light TV in my basement before going to sleep. Then I walking upstairs to my bedroom and get ready for bed. The act of walking up the stairs and getting ready for bed makes me very alert and unable to sleep. Sometimes, I wake up too early, and can't get back to sleep. I'm still tired, but no matter what I do, I can't fall asleep again.

My sleep itself is also strange. As I fall asleep, I start to dream right away. The sights and sounds before I'm fully asleep can be unnerving and can wake me up. My dreams feel different as well, but it's hard to describe. I just don't sleep the way that I used to.

This hasn't happened lately, but it's worth mentioning. As I fell, asleep, I would have a sudden jerk, usually in one of my arms or legs. The sudden jerk would wake me up with a start and could be painful. this was more likely to happen if I tried to sleep during the day.

Speaking of napping during the day, this is an exercise in futility. I cannot sleep more than an hour, no matter how tired I am. As I fall asleep, I am awakened by what I can best describe as an electrical shock to my brain. It wakes me up with a start. It can hurt too. If it keeps happening before I fall fully asleep, it can give me a wicked headache.

I've tried sleep medications, antidepressants, anti-seizures medications, and just about anything you can name. None of it has worked. Usually, I'm just very drowsy the next day. Frequently, I get other side effects as well.

Does anyone have these same problems?

Without fail, my FAR infrared sauna has helped my insomnia. The insomnia often simply be caused by neurological disruption in the brain due to the build up of Bb related toxins. Any toxin that is fat soluble can be sweated out. Only proviso is that if you take the sauna too frequently it can actually begin to make the insomnia worse again as the radiation is killing Bb and of course they release yet more toxins as they croak.
Posted 6/15/2010 6:17 PM (GMT -8)
Ih8ticks,

I haven't experienced any strange dreams, but if I did it would be better than the broken sleep, can't fall asleep, can't stay asleep, etc that I've experienced.  You might want to give it a try.  Good Luck, KO

Posted 6/17/2010 3:33 AM (GMT -8)
I too started having insomnia when I became sick..I struggled with it for about 2 years before I finally started taking Lunesta because like you I couldn't sleep, stay asleep, had unrefreshing sleep...etc all of it.

I went to a sleep specialist who said the unrefreshing sleep and insomnia was due to CFS symptoms and she is the one who gave me the lunesta. That was in 2006. The lunesta has worked wonderfully for me since then but I am now in the process of tapering off. I want to get off them to find out if I actually still need them...it is brutal but I have to do it.

For the past 4 years all my doctors had talked about a sleep study but none of them ever went forward with it or seemed like it was probably a necessary test for me. Even Dr. H suggested maybe it could be helpful because the fatigue/exhaustion was the worse for me.

Well..on Monday I am finally having that sleep study done. I have thought for a long time something is wrong with my sleep and I may be asleep but my body is not resting so that I am waking unrefreshed. I can be totally exhausted and never can nap during the day. I know most people probably don't need a study but this has been my constant struggle for almost 6 years and either way I need to find out.

I am going to be allowed to take the lunesta because otherwise I will lay awake all night. I am nervous and excited at the same time because this will be another piece of my puzzle. I know something is disturbing my sleep but not sure what. The doctor said many people have no idea what is going on when they sleep and are very surprised to find out they have apnea or other disturbances.

I too had wonderful, peacful sleep before this and would give just about anything to have that back...I haven't had a good sleep in almost 6 years.

Posted 6/17/2010 7:10 AM (GMT -8)
I, too, have had insomnia since the beginning of my illness about a decade ago. I have had success with trazodone 300 mg at bedtime (brand name Desyrel) since '07. Previously, I was taking both zopiclone and clonazepam for sleep which seemed to make my memory problem worse. I have never had success with any homeopathic remedies.

I truly empathize with you, and I hope you find something that works.
Posted 6/17/2010 11:35 AM (GMT -8)
Like Spaztick, I take 300 mg of trazodone each night, along with 6 mg of melatonin & 250 mg of magnesium oxide. This is the only way I can sleep at all. I am starting to have totally unrefreshed sleep issues again (along with some serious salt cravings!!) & am looking into the possibility of adrenal fatigue now.

Ktp - let us know how your sleep study goes!!!
Posted 6/17/2010 12:41 PM (GMT -8)
Hi Traveler,

That's a good idea to take melatonin along with trazodone. I have recently been having sleepless nights which hasn't happened since early '07. I'm not certain, but I suspect it may be Lyme-related. And likely hereditary.

Have you noticed any side effects from trazodone, such as weight gain?
Posted 6/17/2010 1:56 PM (GMT -8)
Giggle!! weight gain??? Man! I go through periods where all I have to do is walk by a piece of chocolate & I would gain weight!! smhair

But, in answer to it being related to taking the trazodone - no, I have both gained & lost quite a few pounds since being on trazodone.

I also drink Celestial Seasonings "Sleepytime Tea" (I don't have any connection with this company nor do I receive any monies from them). Chamomile is know to have anti-inflammatory properties & the mint is soothing.

Another thing I do from time to time is get lavender oil & place a few drops on a piece of fabric, place the fabric in a sandwich baggie & leaving it unsealed, place it under my pillow at night. Lavender oil is recognized as being able to 'promote' sleep.

Hope you find whatever combo you need to get the rest you need. :-)
Posted 6/17/2010 2:49 PM (GMT -8)
Can Insomnia be hereditary? My Dad never slept longer than 4.5 hrs./night...and both my Brother and I have bad insomnia.
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