this insomnia makes me feel so desperate. it is unrelenting. i cannot believe it.
why won't this insomnia die already??? die die die stupid insomnia.
Posted by Lymetoo (Member # 743) on :
Mine is still going strong after 4 yrs of Lyme treatment and several years off treatment.
Still can't sleep unless I'm drugged!
I take 6 mg melatonin, 5-10 mg of Ambien, 250 mg of trazodone, and 10 mg of Flexeril.
Sometimes I also take a special formula of Malic Acid which has some natural herbs that make me sleepy.
I'm looking to doing without Ambien more often if I continue taking the Malic Acid. [Solaray brand]
Not sleeping is not a option for me. I refuse to do that to myself.
Posted by CatWoman (Member # 10900) on :
lymetoo,
i'm glad you've found something that at least puts you out for a while. for me i think it will have to be a shot gun (no i am not suicidal just being morbid). nothing will stop this insomnia. well nothing i've tried so far. it is unrelenting.
it's so unnatural in a way that i can't explain but that all you people who deal with insomnia every night know what i'm saying. it makes me think what the hell is the point? i can't read i can't drive i can't think anymore.
i just have to keep hope it will improve.
insomnia is my longest running symptom.
Posted by CatWoman (Member # 10900) on :
i think shotgun is one word. i really shouldn't joke about that. i am just feeling so miserable right now i just need to sleep one of these years.
Posted by Lymetoo (Member # 743) on :
You may need to talk to your doctor about trying Xyrem. A drastic move, but I would do it if I couldn't sleep.
I think the combo of things I take is what does it for me. Any ONE of those and I'm still awake or waking after only an hour or two of sleep.
Have you tried Trazodone in high doses?
Posted by bejoy (Member # 11129) on :
Sometimes lyme insommnia is a case of high cortisol at night when it should be low.
Cortisol can get very high when fighting infection.
There are many herbs and supplements that can help moderate the adrenals.
Try B vitamins in the morning with pantothenic acid. Take calcium and magnesium at night. Also licorice root and siberian eleuthero can help. Also throw in plenty of vitamin C.
Could help. It helped me quite a bit, back when. Good luck!
Posted by Lymetoo (Member # 743) on :
My cortisol is low, so I take 10mg in the a.m.
What about you, CatWoman?
Posted by CatWoman (Member # 10900) on :
Xyrem did not knock me out at any dose.
my night cortisol is high; AM cortisol is low.
i'm back to cring now. oh insomnia makes your mood labile?? no kidding!!!
i don't know if i'm coming or going. wow this blows.
i've had insomnia for too long. screw this!!!
Posted by notkrazybrian (Member # 10621) on :
i have insomnia too it SUCKS (ive grown immune to xanax) i feel you catwoman, i also take 10 mgs in the morning of cortisol, lymetoo. brian
Posted by CatWoman (Member # 10900) on :
Ahhh benzos :-( i am tapering off them. maybe that is making my sleep worse? It's hard to say because my sleep is always horrible!!
thanks brian i feel for you too. insomnia sucks so bad.
Posted by cantgiveupyet (Member # 8165) on :
my sleep is all wacked out too. Sometimes the neurontin and zanaflex do it for me, other nights they dont.
My AM and PM cortisol were high last time i got those checked.
I find I can stay up later and later each night.
Posted by METALLlC BLUE (Member # 6628) on :
I'm on Ativan, and it's worked for a number of years, but it's gradually losing effect now that it's about 4 years later. It worked very well and I reached 2 mg per night. I could go higher but I'm trying not to.
I am told by a lot of people that Seraquel is a good option, but that you must take it much earlier if you expect to wake up at an appropriate time. This means going to bed earlier than usual. If you go to bed at 11, go at 9 instead.
quote: Ahhh benzos :-( i am tapering off them. maybe that is making my sleep worse? It's hard to say because my sleep is always horrible!!
Withdrawl from the Benzo family is a brutal experience, especially if you've been on them for a long time. Lower the dose slowly, and I do mean slowly. Regular psychiatrists say 1 month is fine, but for a Lyme patient? Try 3 months to taper off. Not only that, but you have to replace the Benzo with another medication or herb, or something you know is safe and effective for you.
Withdrawl is similar to a flare-up of Lyme, or a Herx reaction for some people. Some people can't even handle it and have to be hospitalized. So go easy.
Posted by MusicMan (Member # 11966) on :
Hi there
Yep, I had a bout with that last night. I woke up around 1:30 with hot flashes and did not get back to sleep till around 4:00.
I take some strong stuff at night too so I'm always surprised when I wake in the middle of the night. 25 mg Amitriptyline 600 mg Nuerontin 0.25 mg Clonazepam
Steve
Posted by Rianna (Member # 11038) on :
Insomnia is a very classic Bart symptom - and can get bad when you start Bart treatment for a while.
Have you been treated for Bart?
Personally I take a pill called Zopiclone (unsure if you have it over there) it knocks you out for 6-8 hours with no drag over whatsoever, although my LLMD says once bart is under control the insomnia slowly lifts - lets hope so!!!!
Rianna
Posted by tailz (Member # 10014) on :
I cold-turkeyed a 15-year benzo on my own in the throws of Lyme, and look how healthy I am today. ha ha
I was on Seroquel for a while, and I remember it did help my anxiety and helped me to sleep initially. I think it stopped working though eventually - I can't even remember.
What's really weird is that I can't sleep unless the lights are on.
Posted by Lymetoo (Member # 743) on :
CatWoman... I bet the withdrawal is half the problem. I do feel for you.
I would try the Trazodone or the amitriptyline. You can take pretty high dosages of those.
Posted by CatWoman (Member # 10900) on :
i haven't been on benzos for years or anything like that. not even six months. for the most part i wasn't taking them daily. oh well in any event i'm sure it's worsening my (already awful) sleep.
no i haven't yet been treated for bart. i have a crazy massive yeast problem that is holding everything up. no idea how to kill the yeast!!!!
Posted by CatWoman (Member # 10900) on :
i can't take antidepressants i have a severe adverse reaction to all of them.
i have taken zopiclone out of desperation and it's not very effective. it makes me feel relaxed but i can't say it really helped my sleep.
wow so sounds like the bart could be the major cause of the insomnia? Here's hoping the bart is causing it AND it is treatable. Die bartonella die. (as soon as I can treat you bart you will die).
Posted by groovy2 (Member # 6304) on :
I have not slept in 20 yrs -j-
Posted by Tiramisu (Member # 15082) on :
Catwoman: I also tried antipressants in the past (low doses for sleep), and could not tolerate them.
I tried Elavil, though, and was pleasantly surprised. I have gotten a much better night's sleep on 1/2 of a 25mg pill, taken about 7 or 8pm.
It has also improved my PAIN and FATIGUE, and I had given up on anything helping my fatigue! I was so surprised, because it's cousin Nortriptyline did nothing for me.
I used to take Trazadone, which worked well for sleep only. But eventually the dose needed to be increased and it was making my chest feel really screwed up. So I had plateaued on that.
For anyone on the fence about trying another antidepressant, I hope they read this and give this one a try.
Posted by bettyg (Member # 6147) on :
,,,
jay, i have you beat; haven't slept in 30-35 years out of my 38.5 years with lyme.
finally my sleep test showing i do have sleep apnea too showed twice; I GET NO DELTA SLEEP and rarely get to level 3 let more level 4 !! *******************************************
i wouldn't wish this on my worst enemy; so that's why i'm on here during the WEE AM HOURS!
i wear myself out, and have fallen asleep in my chair! Posted by NorthernLyme1 (Member # 8992) on :
According to Dr.K in the document Lyme Disease: A look Beyond Antibiotics
the "insomnia of Lyme disease is often herpes viral in nature (EBV, VZ or HSV1, HSV II). As a diagnosis tool I often use 1000 mg of the medical antiviral drug Valtrex at bedtime. If there is a dramatic improvement, herbal antiviral treatment has to be considered for a long time".
He suggests that the "ayurvedic herb cocktail Indian Gooseberry, Chelubic and Beleric myrobalan which has given the most profound and lasting effect on the viruses of the herpes family" is worth trying.
This herbal combo is a bit difficult to locate, however, I found a source in Seattle and have just started this product. Will report back if anything improves on the insomnia front.
Maybe your problem is more about area cell phone towers and antennas? Exposure to electromagnetic and microwave fields interferes with sleep.
Posted by painted turtle (Member # 7801) on :
Catwoman,
Just want to say that insomnia was a really ugly problem for me for like, I don't know, two years or something.
Happily, this insomnia has subsided and is not a problem except once in a while.
I can't say exactly what helped, but the overall long term treatment, which has included the antibiotics.
Hang in there!
Posted by mamam (Member # 16246) on :
i thought you weren't supposed to take Ambien?
And why is it that you cannot drink alcohol. is
it because of the abx or the lyme itself?
Posted by InADaze (Member # 7711) on :
Flexeril & Neurontin taken at night(tapered up until I could sleep) actually gave me my first real night's sleep in about 6 or 7 years.
Took me several weeks to find the dose I needed, and I still don't sleep well when I'm herxing.
But, it's such a HUGE improvement that I'm not complaining about a couple bad nights in the midst of many good nights finally.
My only real side effect is constant thirst. But, it seems a fair trade.
![[Smile]](smile.gif)
![[Frown]](frown.gif)