This is topic Allrighty. Sleep is a problem. in forum Medical Questions at LymeNet Flash.

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Posted by Jordana (Member # 45305) on :
I've been awake for 26 hours.

I tried, and then i tried again, and then I tried again. What is gong to happen is that I am eventually going to pass out and sleep sixteen hours to make up for the sleep I missed. I will be comatose and unwakeable.

I need pharmaceutical help, I think, and not benzos because I have them and they don't work. In fact I tried to take an ativan two hours ago and it did not work.

This is getting bad. It worries me because I know it's really bad for me. It makes me feel like I'm sicker than I actually feel.

Ugh. Can insomnia be a herx?
Posted by paleogal (Member # 45991) on :
I have really horrid sleep problems during (I think) Babesia herxes.

My first herx ever (once I knew I had Lyme and co) happened on the first day of a new med (primaquine) and (coincidentally) a full moon - I was up all night with migraine, severe bone pain, sweats, and I just started crying, even though I knew it would make me feel worse. Turns out the emotional stuff is also Babesia for me.

I don't think I slept that night, but later herxes I can usually get a couple of hours of sleep (usually between 12-2 or 3am).

I haven't solved my sleep issues overall, but they are generally a bit better when I'm not herxing. Good luck to you.
Posted by Jordana (Member # 45305) on :
Thanks Paleogal.

I think it is some kind of herx thing.

Five hours, then I had to wake up to take meds. Now I'm awake again. So disorienting. I haven't felt much in the way of neuropsych symptoms since the start of all this but the utter lack of days and nights makes me feel crazy.
Posted by bluelyme (Member # 47170) on :
Ya new meds keeping me awake.....using phenibut, melatonin ,holy,basil,
Posted by Robin123 (Member # 9197) on :
Insomnia can also be present without a herx. I go through it, and I am not herxing.

Sometimes I just stop struggling with it and stay up all nite and go to sleep the next nite. I drink coffee during the tired day.

My opinion is that it is part of the Lyme experience, that something is throwing off our sleep cycle.

I know that melatonin is involved in inducing sleep, so maybe our melatonin gets thrown off? If anyone knows the biochemistry of how Lyme throws off the sleep cycle, please let us know -
Posted by Jordana (Member # 45305) on :
I think I need phenibut. Where are you getting yours, blue?
Posted by SLH516 (Member # 48060) on :
Jordana, I'm so sorry that's happening. Do you work, or are you maybe on disability? I'm just wondering if you have the opportunity to sleep during the day if you need to.

My sleep has been messed up for years, although I'm less irritated by it since I've been on disability and can sleep whenever my body and my migraines decide to let me.

Lately I tend to be able to sleep for only 2-4 hours at time, I'm awake for a couple of hours, then back to sleep for another 2-4 hours. That particular pattern does irk me. I seem to have absolutely no patience with lying in bed awake, so if it takes longer than 5 minutes or so to get to sleep, I'm back up and messing around until I feel tired enough to try it again. It's really frustrating and bothers me much more than not sleeping at all.

I just googled phenibut -- I would love it if that would work, and I'll try anything at the moment. I'm joining Jordana in waiting anxiously to find out where you get yours, bluelyme. Does the holy basil help with sleep specifically, or more with stress (which of course would help with sleep)? Where do you get that also, bluelyme?
Posted by paleogal (Member # 45991) on :
count me in on waiting on bluelyme for phenibut and holy basil info! [Smile]
Posted by sammy (Member # 13952) on :
The supplement by Xymogen called "SedaLin" helps me relax and calm my brain to be able to sleep better. It is a combo of Magnolia officianalis (bark) and an extract from Ziziphus Spinoza (seed).

It's also known as Seditol by other brands like Source Naturals. (This brand works well too.)

Take the Seditol to relax a couple hours before bed. If needed, take another 2 capsules at bedtime to fall asleep easier.

I have a difficult time falling asleep at what is considered a normal time. My body just rebels! I will fall asleep only to wake every hour and struggle to go back to sleep.

So I don't fight it. I try to relax, avoid doing anything mentally stimulating, and basically just watch TV or a movie after 10pm.

Then by 12:30/ 1am, I feel relaxed enough to go to bed.

Sometimes I just lay down and fall asleep at that point. About half the time I lay ther listening to my sound machine for another 30-45min before falling asleep.

If you don't have a sound machine, I highly recommend you trying one. They can help you relax, fall asleep, and stay asleep! (I use an ocean waves setting.)
Posted by ohioperson22 (Member # 47837) on :
Exercising during the day (and supposedly late afternoon) can help sleep.

Weightlifting can be good for this. Maybe order some handweights or even a small multi-functional workout machine like a bowflex for you home, and use it.

Or even don't buy anything and do some pushups, situps, planks, static lunges.

(if you are already working out, then nevermind)

And, don't know how sick you are, but definitely get approval from a doctor or you LLMD before starting an exercising program!
Posted by Jordana (Member # 45305) on :
I ordered a bunch of stuff online last night -- melatonin, holy basil, and phenibut from here --

I have no idea if it's a reputable site or not;I just put it in the search engine and bought it. I always make sure I can use paypal with a new site.

I also decided to set my alarm every day for 9:30. I've been living by my med schedule and getting anxious about missing doses. It worked a little bit; I slept a normal amount, sort of, and woke up while the sun was still up at least.
Posted by paleogal (Member # 45991) on :
Sammy - I have the same issue! I can't fall asleep before 12:30 or so. I *can* get a full night's sleep if I fall asleep at 12:30, get up to pee once around 3 or 3:30 (liver detox issues? or parasites? seem to wake me up regularly), but then I can sleep until 7, rouse briefly, and fall back asleep until 9am. Then I feel GREAT.

(Difficult with a job that starts at 8:30, so will be talking with my LLMD about this and whether we can incorporate a later work time into my disability plan...I really do feel 200% better (so, like 80% of my "normal" [Wink] if I can sleep at the time my body lets me.

If I try to fall asleep at a reasonable hour, like 10pm, I spend the whole night tossing and turning. I really do not get it!

Thanks for the site Jordana - I will try that too! I have taken over our bathroom counter and I've lined up everything I've tried so I can rotate them - I think my body also does well rotating various things? Maybe? Or maybe nothing works and it's my body's/diseases natural cycles that controls sleep...

good luck to everyone.
Posted by gz (Member # 43818) on :
For anyone considering phenibut, please thoroughly research it and be extremely careful if trying it. It's know to build tolerance very rapidly and cause withdrawal symptoms much worse than the original situation that it was used to help.
Posted by randibear (Member # 11290) on :
wow me too. doctor said "what do you expect? you're getting old. you don't need as much sleep."

so I guess getting 1-4 hours a night is ok.

Posted by sammy (Member # 13952) on :
I set my alarm to be up by 9am every morning when I don't have to be up earlier for a doctor appt and such.

I do find that it helps to have a consistent morning wake up, even if I didn't get the ideal full nights sleep. I still feel better that way rather than sleeping until noon.

Also, the sound machine helps me more than meds and supplements. I have an actual device (made for children). I also sometimes use an app (free) that I found called "Sleep Pillow".

I like the sound of ocean waves, it is most relaxing to me. Though others might like different sounds and volumes.
Posted by randibear (Member # 11290) on :
I love those. I like the night forest sounds.
Posted by TF (Member # 14183) on :
Insomnia is a very common lyme symptom. My lyme doc told me that lyme affects the sleep center of the brain.

I got so bad when I had lyme that I would fall asleep at maybe 1 a.m., sleep 20 minutes, wake up and later sleep another 20 minutes then up and sleep another 20 minutes and that was it for the rest of the night.

Once I got to my Burrascano-type doctor who cured me, my insomnia was a thing of the past. So, I think that good lyme treatment cures this. I believe that I got rid of it within a month or 2.

Per Burrascano, bartonella also causes insomnia. Here is what is on p. 10 of the list of lyme symptoms:

Insomnia, fractionated sleep,
early awakening

I experienced all 3 of the sleep problems mentioned.
Posted by norcal (Member # 29829) on :
TF thanks for that description,that is me exactly.
Sometimes you feel as though you are the only one going through this.

I guess have more work to do,but I am definitely starting to feel better after a tough winter and spring.

Currently using cannabis and good sleep hygene and practicing going to bed early.

I feel like when I get an early start it is much more relaxing then turning in late because when I do that it is more time available to rest ,even if not asleep.

That way I'm not so preoccupied with being sleep deprived and panicked about the lack of zzzz's.
Posted by bluelyme (Member # 47170) on :
Sorry had ruff weekend and port issues..the phenbut was i believe biotics and planitary herbals on holy basil..i think it is bartonella or babs ...i just started alinia and i was told it hits both.. i am havjng trouble sticking with treatment it is full time with overtime ...newborn was easier...need zzzzzs

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