I've been having severe insomnia for over a year. Previous to this I had been in remission/cured to the point I didn't need anything to sleep, and slept well. Now I take a handful of meds and supplements and still have crap sleep.
First sick in 2002; dx'ed Lyme w/Igenex 2009. I'd improved significantly on just minocycline 2002-2009, and then made more progress after dx with more abx.
My doc suspected mold last year, and I had a positive test for aspergillus in Sept 2023. Been taking itraconazole since late Dec until now. Added in terbinafine last two weeks as I recalled it greatly improved my breathing, clarity and endurance when I first took it for fungal nails in the late 90s, before I got sick with Lyme. SEVERE herxes for a while, but started to turn around end of January. Unfortunately, sleep didn't improve.
Taking a break from the antifungals for just over a week now. Sleep no better. Anxiety really high today, which sucks after it being gone for so long.
Here's what I take to sleep: Natrol 5-htp plus 100mg l-theanine 200mg GABA 750mg 5-15mg flexeril pot gummy - 10mg THC, 5mg CBN 50mg CBD 2 Gaia valerian caps 1 Theanine Supreme w Relora - Source Naturals kava drops - 1 dropper glutathione - liposomal liquid - take at night, seems to help AND 25-75mg benadryl -- this really seems to be what pushes me over into actual sleep 1 doxalamine succinate tablet - generic Unisom - works but hangover 20mg hydroxyzine -- doesn't work any more -- took a long break, worked one night, then no effect again
I was on trazodone for years, but I remember it made me foggy. I've been off it since 2012. I can get to sleep with all those pills, but still burst awake 3am or so, sometimes multiple times a night.
Does anyone have any suggestions? This is really ruining my life. Thanks in advance! D
-------------------- Lyme by Igenex 8/2009. Sx of coinfections but no positive testing. Aspergillus by Mosaic Dx 9/23. Posts: 30 | From Seattle, WA | Registered: Jan 2010
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posted
My LLMD gave me phenergan (25mg) for my insomnia which has helped a lot.
Also:
I have been weaning off all my meds. Among other stuff I took ativan and klonopin. When I got off of ativan I found that my ability to stay asleep improved. My theory is that while it is faster acting ( I could easily get to sleep) than klonopin, the act of it wearing off caused me to wake up.
Klonopin is a different story for me. I love it for sleep. I dont take it daily and use it as a rescue type of drug.
The point of all this is that you might want to look at your list of supplements/drugs to see if any of them are really short acting. It might be those causing you to wake up.
Posts: 836 | From Somewhere | Registered: Nov 2010
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hiker53
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I could not sleep with CBD. For some the pot gummy keeps them awake.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8975 | From Illinois | Registered: Aug 2004
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kgg
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Wow, and I thought I took a lot to sleep. That must be so frustrating. I am so sorry.
I too have been waking up for years at 3. Years ago my son had a saliva cortisol test done. It showed his cortisol spiked in the evening, when he should be going to sleep. Certainly explained his night owl tendecies.
Then recently I read an article that suggested waking up at 3 AM was a cortisol spike. So I added one capsule of my son's PS100. Phosphatidylserine. It protects against an increase in levels of cortisol. I take it at 8PM. It was not immediate. It worked one night and then not the next. I have now been on it about 3 weeks and I am not waking at 3AM anymore consistently.
I use the Jarrow brand because it is sunflower oil based and not soy based. I try to avoid soy.
Additionally, last year I have noticed a dairy intolerance. Interestingly, it does not cause obvious stomach upset like dairy is known for, it effects my sleep. It prevents me from falling asleep. So on those nights that I have consumed dairy during the day, I switch out my hydroxyzine for Phenergan. Then I can fall asleep. The Phenergan must still help my stomach even though I am not aware of upset. All of that to ask, have you considered or looked at food allergy or intolerances?
Over the years of this sleep battle, I have found antihistamines about the only thing that works for sleep for me. But my body gets used to them and I have to switch them up. I took Benadryl for years, then switched to Hydroxyzine.
Lastly, years ago they came out with Silenor. It was $600! Come to find out, it was Doxepin in a lower mg dosage. It was 3mg instead of Doxepin's 10mg. It helped my son sleep. So what we did was buy Doxepin 10mg suspension and used the dropper to get to 3mg. At the time it was just $10. Now it is more. But still much more affordable and it works for my son. He has been on it for years now, but he is now up to 5mg.
You mentioned mold. Are you still in the home that had mold? That may be impacting your sleep as well.
Lastly, I think anxiety is the worse of all feelings. They claim that magnesium helps with that. I hope you find something that works!
Posts: 1705 | From Maine | Registered: Jun 2004
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hiker53
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Also, since I started wearing socks to bed, I sleep better. Sounds weird but it is also backed up by science.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8975 | From Illinois | Registered: Aug 2004
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aklnwlf
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I've had insomnia issues for a number of years. I've tried many of the things you mentioned with them working maybe one or two nights.
One thing I'd like to mention is my allergist said histamine rises at night time and he put me on Doxepin.
That worked temporarily.
What works for me is a low dose of Triazolam.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6213 | From Columbus, GA | Registered: Jul 2004
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posted
I had insomnia for a long time and nothing worked until I tried melatonin powder combined with a fat like coconut oil or phospholipids at high doses.
posted
also I'm presuming you don't take SSRI bc you take 5htp - but when I was taking SSRI it definitely impacted my sleep in a negative way as it's improved since I came off it so I wonder if 5htp could do the same?
a couple of years ago I tried a gaba and l theanine combo from quicksilver which actually prevented me from sleeping
I'm about to start cortisol manager by integretive therapeutics which contains ashwaganda, magnolia bark, l theanine, phospholipids - so I can let you know how I get on!
I also found with cannabis it increased my heart rate and anxiety if I took too much (more than a micro dose) which can negatively impact sleep
I used to take glutathione liposomal and found if I took it at night it impacted my sleep but if I took it earlier in the day it didn't
Maybe these are some things to consider if you haven't already
I'm curious if you are taking all these things and your sleep hasn't improved then how come you are still taking them?
Posts: 21 | From UK | Registered: Mar 2024
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Apologies all for not responding sooner! I wasn't notified of the replies.
Thank you for all the suggestions. I'll follow up with my doc as I can--switched insurance, and she's tough to reach in any case.
My working theory is bartonella is back, more than fungal problems. I was on itraconazole for three months, so hopefully that's gone. Will report back.
Thanks!
-------------------- Lyme by Igenex 8/2009. Sx of coinfections but no positive testing. Aspergillus by Mosaic Dx 9/23. Posts: 30 | From Seattle, WA | Registered: Jan 2010
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Short update. Been on trazodone for two days and it's helping. 25 not enough but 50mg really works. Used trazodone for over a decade of my late 20s-30s, only got off it my early 40s. I remember it having more hangover, but none with this dose.
Have cut out all antihistamines, 5-HTP and halved muscle relaxers. Sleep improving, still bolting awake 2-3am. I think from external noise or my f***** cat.
-------------------- Lyme by Igenex 8/2009. Sx of coinfections but no positive testing. Aspergillus by Mosaic Dx 9/23. Posts: 30 | From Seattle, WA | Registered: Jan 2010
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hiker53
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dex3703– glad you have improvement. Hope it continues.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8975 | From Illinois | Registered: Aug 2004
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kgg
Frequent Contributor (1K+ posts)
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posted
So pleased for you! Sleep is incredibly important. I don't remember. Have you had a sleep study done to see if you are waking up from sleep apnea?
Posts: 1705 | From Maine | Registered: Jun 2004
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