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» LymeNet Flash » Questions and Discussion » Medical Questions » Terrible Insomnia

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Author Topic: Terrible Insomnia
Lymewest
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I’m new on LymeNet. Was just wondering what any of you have to share about sleep deprivation..

I’ve had Lyme and co-infections since 1993. Treated on and off with drugs and various supps. But it’s only been in the past year that my sleep has been severely disrupted. I’m lucky to get 1-3 hours a night, and if so, I usually have high anxiety dreams during that time.

People wonder how I make it through the day, but I don’t feel like sleeping in the day time either. It’s as if something ( Lyme? Bart? Babs? ) is blocking the mechanism in the brain that gives you that fatigued feeling, where you want to doze off. I don’t feel that anymore.

If I do doze off, I’m awake again pretty soon after. I don’t know how much longer I can go on like this. I’ve tried everything, and nothing works except one drug that kind of does, but I need to avoid it because of bad side affects. Trying to avoid regular drug use.

Which infection causes this symptom? I’ve had severe night sweats in the past that a Lyme doc gave me Malerone for, for just a month. And I haven’t had the severe drenching sweats since. But I do still get hot and cold shifts.

And I’ve also had a constant pressure and ringing in my head pretty much since I was first infected in 1993. I’ve been infected on two other occasions since then.

Would appreciate any feedback! This severe lack of sleep is gradually worsening my cognitive abilities, and can’t be good for the immune system.

Posts: 15 | From Southwest | Registered: Aug 2020  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Welcome!! I'm sorry you are suffering from insomnia. I have had trouble sleeping my whole life. (I've had Lyme for more than 60 years)

But ... about 6 years ago I found out I am sensitive to salicylates. They are really bad about causing insomnia....and guess what? They can cause ringing in the ears!!

I'll bring you a link for that so you can do some research.

Also consider the possibility of Mast Cell Activation Syndrome. Most MCAS patients have high levels of histamine in their bodies and that can also cause ringing in the ears.

Many Lyme patients have found that they have MCAS. (I was dxd 4 years ago but have had it "forever.")

Here is a link on MCAD (MCAS is a part of MCAD).

Also .. I still take Ambien, but can get away with not taking it sometimes.

Mast Cell Activation Syndrome:
https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036299;p=0

Salicylates:

https://www.fedup.com.au/factsheets/additive-and-natural-chemical-factsheets/salicylates

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94468 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymewest
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Thank you. I will look at this. My current Lyme doc thinks Babesia and possibly Bart is the cause of the head pressure and ringing. Insomnia too. But it could be a whole host of other things too. Very confusing.
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Lymewest
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Also wondered if there are now Lyme Zoom meetings.
Posts: 15 | From Southwest | Registered: Aug 2020  |  IP: Logged | Report this post to a Moderator
daisys
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I have had terrible insomnia for many years. In the 1990's, I was stuck in a light sleep, so never was alert, and never got deep sleep or dream sleep. It was pretty awful.

I was diagnosed with fibromyalgia, which includes a sleep disorder, and also chronic fatigue syndrome. So, I'm sure what is behind my sleep disorder.

I see you're from the Southwest. I have found the best sleep specialist ever, and she's in Albuquerque. If you like, I'll PM her contact info.

I think I got about 8 hours last night, and woke up once. I've been cutting back on meds.

I'm getting better from Lyme disease, so that may account for the sleep improving.

Posts: 395 | From New Mexico, USA | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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I have only Lyme and that has caused me the same insomnia you're describing.

What worked for me for many years was knocking out successfully with benadryl 25mg. Then the effective dose upped to 50mg, then 75mg, and then I quit taking it. But I went years before that happened.

I guess any of us can experiment with herbs that are supposed to make us sleepy - I haven't had much luck with that, but there's a bunch of them - usually get them at the healthfood store, single or in combo form.

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Lymewest
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Thanks for the replies and sharing your experiences. I was originally infected back east. I can literally feel something infecting my head / brain. And know the sleep problem is worse because of that. Just don’t know which of the infections is behind it.

Saw a lot of old posts on here talking about Babesia and describing my symptoms. Since I was diagnosed with that years back, Really just want to figure out what is best to attack the Babesia with. Preferably natural.

Had a bad herx from taking just one artemisinin capsule. So that tells me something. I wouldn’t mind getting the sleep specialists name in Albuquerque. Does she understand Lyme related diseases? Albuquerque is pretty bad with that.

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hopingandpraying
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Contact the New Mexico Lyme Support Groups - maybe they can help you. They would know better about NM.

http://whatislyme.com/new-mexico-lyme-support-group/

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Lymetoo
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Lymewest... I took arteminisin and zithromax for babesia. It worked very well.

Lyme links you may not have seen.

https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymewest
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Thanks everybody! Making a note of all these things. Think I’m going to try artemisinin again. Just slower. Seemed to herx real bad on it a couple weeks ago and stopped.

Glad you all are finding things that work for you. [spinning smile] :

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daisys
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Just a thought--If someone has sleep apnea, they can suddenly wake up hyper alert because the body reacts to the drop in oxygen.

Measuring the oxygen one night will show if this is a problem. Then a sleep study will show which kind of apnea is to blame.

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Brussels
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My vivid dreams / nightmares came basically during lyme.

I think when I got very toxic, they got worse. Like unbearable. I took chlorella in great amounts at that time, coupled with bear garlic tincture then.

I would suggest you to take some binders to pull the toxins off. Or high dose vit C? (I take liposomal Vit C that I prepare at home).

What you describe has to do with adrenal fatigue. Extreme adrenal fatigue. You cannot relax with it either....

For me, infections AND toxins cause me high anxiety. I know I'm well, deeply well, when I can sit, relax, doze, nap under the sun, have normal dreams and not wake up suddenly in fight and flight mode.

When infections stop to plague you, you'll get the feeling of relaxation back. But for that, I needed a lot of binders, many times a day, for years. Until lyme was finally gone.

I can get anxiety when I get some skin inflammation back, for example, or after coffee. That's pretty similar to the lyme + toxin anxiety.

Another thing that helped me was to keep grounded (earthed), but not without my binders....

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lymenotlite
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For me, drenching sweats were babesia and especially with taking Mepron. I also suspect toxin overloads.

Hulda Clark recommended Ornithine for trouble sleeping and that did work once for me but I forget to take it. Tudca also helped once as well but I forget to take it. (Neuro lyme)

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norcal
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trazadone and indica cannabis,wishing you success!
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xoxoxox
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Sounds like Bart to me. I too have severe insomnia and ringing in my ears.
Nothing has helped the ringing. Generic form of controlled relief Ambien has been the only way for me to get sleep.
It's not for everyone, but there have been no problems for me.
If you do find a solution to either issue, please let me know [Smile]

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Danni

Posts: 309 | From Glen Mills, PA | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
xoxoxox
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Sounds like Bart to me. I too have severe insomnia and ringing in my ears.
Nothing has helped the ringing. Generic form of controlled relief Ambien has been the only way for me to get sleep.
It's not for everyone, but there have been no problems for me.

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Danni

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Lymewest
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Thanks for all the great replies here. Can relate to a lot. Will look into these suggestions.

Brussels, I totally get the anxiety stuff. My infections do seem to key up my whole body, especially at night, kind of like caffeine.

Along with Chlorella and garlic, What are all the different binders? I realize I need to be doing these.

Right now I’m getting some sleep on Sonata. But only for maybe the first 3 to 4 hours. Don’t want addictive things though. Will look into some of these other things posted.

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LehighLyme
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You have to take care of the Bart and the Babesia. Bart is notorius for causing insomnia. All tick born infections drain our bodies of essential vitamins and nutrients. Our family take Natural Vitality CALM (Get the one that says SLEEP on it). Try that for a week and may help before you go to bed. It zonked me out...

Also get Stephen Buhners book on Bartonella and he offers alot of herb solutions you can get through woodlandessence. com and it won't break the bank- best book to read on Bartonella though- will be amazed to read what it does in the body...

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Lymewest
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Thanks 😊
Posts: 15 | From Southwest | Registered: Aug 2020  |  IP: Logged | Report this post to a Moderator
   

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