insomnia and lyme/sleep meds

I'm wondering how many people have insomnia every night and become dependent on rx sleep meds with chronic lyme?

My primary care who had my insomnia diagnosed as due to a medical condition left that clinic and I left the clinic then to go to one closer to me. The former MD was willing to rx ambien.

That was a huge mistake! Should have stayed at the clinic where that diagnosis is in my record.

Last summer I had ambien denied me by new MD when I switched clinics, but she relented because I had appt to see LLMD coming up.LLMD sent me to clinic I’m at now.

My current primary care NP has made me go from 10 mg to 5 so I'm staying up til 3 am so I can sleep in early morning and shorten my day. I’ve done that the last two nights and today I have so much anxiety which comes when I’m overly tired. I don’t get enough sleep on a 5mg.

Friday I saw a different sleep doctor because my NP said he helps with meds. It wasn’t true. I mentioned lyme but that just went over his head.

With my new NP, we tried several non-sleep meds like seroquel, nortriptyline and another I can’t think of. My old MD tried flexeril and temazepam. Antihistamine derived drugs make me wired. Nothing works. Tried all the natural things too. And bought 1200K alpha-stim.

I know when you’re dependent (addicted!) it takes time for the brain to sleep naturally again. But it feels to me like something’s wrong with my brain from the lyme. I get headaches in lower part of head which is where sleep center is I think.

I’m afraid I’ll relapse from little sleep and stress over this.

I’m feeling so hopeless.

Back when I couldnt sleep I tried everything, seems non worked very well.

Now I just use generic ibuprophen PM. Its a different version of Benedryl in it, that I can seem to finf by itself. It works though. I also take 400 mg mag glycinate 1/2 after (so it doesn't absorb the ibu PM).

Mag absorbs anything taken together.

You probably already know this, but I would avoid benzodiazepines, which I think Ambien is, as much as you can. It is such a slippery slope the way it changes the brain chemistry. My biggest fear is that I'll end up hooked on it and not knowing. The way my body has been tolerating Lyme, there is no way I could mentally handle a physical withdrawal at this point. In trying to find something to substitute for my Ativan right now.

A guy I was in the psychward with last year (thanks Lyme) was a heroin addict but also hooked on benzos. He said the physical withdrawal was worse from the Xanax I guess he was on.

I started taking l-limonene before bed somewhat reluctantly but it seems to have at least gotten me from 3-4 hours a night to about 6.

I hope this doesn't sound pandering. I think I worry for others which gets my anxiety up and starts this vicious cycle in my head.

Hope you find some relief.

Ambien is not a benzo, it is a hypnotic. Alprazolam (xanax), clonazepam (klonopin), diazepam (valium), lorazepam (ativan), temazepam (restoril), triazolam (halcion), and chloriazepoxide (librium) are benzos.

I feel your pain with insomnia. It is something that has gotten progressively worse the past few years from Lyme and/or EBV. I have trouble getting to sleep every night. Many, many times I've not slept a few days in a row. It's awful! I have also tried all the natural stuff, xanax, ativan, clonazepam and Equate Max strength sleep aid - which is much cheaper than benadryl and the exact same stuff.

Nothing has worked except for the Ambien. As much as I don't want to admit it, it has been a miracle drug for me. I'm out within 15 min and don't wake up groggy like all the other stuff made me. For the first time in years, I feel rested when I wake up and happy that my body is finally able to (hopefully) start repairing what Lyme has destroyed since I can actually sleep now!

My NP gave me 10mg, but I ended up cutting them in half and a few in quarters. For the rare nights when the half doesn't work, I add the quarter. I've only been on them a few weeks, but for now, I guess you could say I'm dependent on them because I'm loving my sleep ;)

I hope you find something to help. Not sleeping is the pits.

The 1st thing I'd try is 3 grams of glycine around 6pm. Many pathogens decrease our glycine levels and glycine in an inhibitory neurotransmitter that works along with GABA.

Supplementing with 1mg of copper gave me 1hr longer sleep time. That was a 20% increase as when I eat animal protein daily, I only sleep 5 hours a night. Exactly 5 hours! There's a cycle in my body that is on a 5 hour timer and it's constant. I had to quit copper supplementation after a week because it caused too much oxidative stress. A couple days a week may be something to try.

Massive Vitamin D increases have caused me to sleep longer. I have a farm and when I'm in the sun 6 or 8 hours a day working, I usually sleep longer. I also herx but since I've been working so much lately, I'm all herxed out. Seems that I've reduced my pathogens enough not to herx.

Lithium orotate 5mg caused me to sleep 1 hour longer than normal. Lithium decreases polyamine functioning that is increased by animal protein ingestion. When I'm working on the farm, I have to increase my protein intake and lithium seems to help. 5mg three times a day would be a normal dose for OTC lithium compared to the 300mg three times a day for the prescription lithium.

Sublingual liquid Melatonin helped me sleep for a few days and then stopped working. In sick people like us, Melatonin acts as an antioxidant. We know it can help for sleep, but for us, it reduces oxidative stress which gives the mitochondria a break.

Reducing animal protein is what helps me sleep. We're all different and this may not help you, but for me, it reduced glutamate levels (excitatory neurotransmitter), it reduced nitrogen intake (decreased oxidative stress from excessive polyamine function), and decreased my acid load (altered valence of polyvalent cations.)

Thanks for all the suggestions! It helps just to know others are dealing with insomnia.

Unfortunately, I can't nap either. Somehow the sleepiness never gets to my eyes! I've done many on your list Danikeel and have wondered about the cannabis. My state just made medical cannabis legal. I've heard that there are different varieties for different medical issues. Is yours specifically for sleep and does it work well?

If someone wants to make me feel really jealous, they can tell me that they took a nap!

My LLMD had me on clonazapam, but I decided I wanted to quit when I forgot it on a vacation and got the rebound anxiety. It was horrible. So I gradually tapered on my own and not using for 2 years now.

I now realize that I should have tapered the ambien first and then the clonazapam since clon. is longer acting.

I discovered d-limonene recently and it does help with anxiety.

Someone here said ambien is their miracle drug and I feel that way too. But the normal doses don't keep me sleep long enough anymore and I dont want to updose.

AND I miss that delicious feeling of dropping off to sleep naturally instead of suddenly being out.

Good to know I'm not the only one with an antihistamine problem. I've done 23andme and it has to do with my genetics. That would be ideal to just do over-the-counter like zquil.

gfields said...
I wouldn't be at all surprised if I have lesions on my brain. How do you get tested for brain lesions?

An MRI.

Gosh, I was prescribed Ativan for my Lyme insomnia. I can go days without sleep. I am very concerned about becoming addicted and never learning to sleep without it. I only take half a pill for that reason. My dr tells me that I will not get addicted to Ativan. I am not so sure I believe that.

Prior to my Lyme diagnosis, I was fearful of any and all medications. I got tremendous anxiety about strange side effects because I always seem to get them. Now I take pills like candy it seems, and its like at this point what do I have to lose. My body is a train wreck so the risk seems worth it at this point.

I am still nervous about the Ativan and only take the half pill not sure what the dosage is but it is the lowert dose available....if I up to the whole pill I feel my heart rate slow and if I check it, my heart rate is in low 50s which feels weird to me since i have tachycardia from the lyme or I guess babesia.

My dr tells me that melatonin will not work for me because Lyme has messed with my brain and hormones and until I am well I need sleep aids. Even with the Ativan I am not a good sleeper...I lay awake for hours trying to sleep. I sleep fully aware that I feel horrible only to wake 4 hours later. During the day, there is no napping just laying on the couch exhausted wishing I could force my eyes to cooperate and close. Without the Ativan I will not sleep at all for days on end only to sleep for a few hours and the cycle continues.

Still...fingers crossed I won't have another problem such as addiction to Ativan when I finally kick Lyme and friends to the curb.

Girlie - No I haven't tried anything other than melatonin and Ativan. The melatonin was before my diagnosis. Only a few days before so I don't know if it would have worked or not, I may go back and try it again.

I will look into some of the other natural things you mentioned. Thanks so much for the suggestions!

I don't want to up my dose of Ativan because when I have my heart rate drops very low and that gives me a panicky feeling. I do take the 1/2 dose every night. I am terrified of going without for fear of another sleepless night.

This board has been so invaluable for me. I don't comment often but I read everyday and I learn so much from everyone here! So thank you everyone who contributes, I know you all don't feel well and it means so much to me that you take your energy and use it to help others!!!

Idon't have the complication of sleep apnea and it's a good thing for me because Im pretty sure I couldn't tolerate the mask.

I've heard a commercial for this device for sleep apnea on the radio. It sounds interesting, but wondering if insurance pays for it.

https://www.inspiresleep.com/what-is-inspire-therapy/how-inspire-therapy-works/

Thank you for bringing my post up, bonnawanna, because I didn't try some of the things mentioned which sound good to me now.I'm still struggling with insomnia.

JoanJet, Denikeef didn't say that she was taking those things, those are things that Buhner lists to help with sleep, and I have his 2nd edition Lyme book, so I can give you the dosages.

Melatonin Liquid - manufacturers directions, one hour before bed, and/or:

Ashwagandha tincture: 1/2 tsp one hour before bed; or powder or capsules, 1 gram an hour before bed, and/or:

Skullcap tincture: 1/2 - 1 tsp 3 times daily, and/or:

motherwort: fresh plant tincture: 1/4 ounce (yes that is right) in liquid just before bed (if the melatonin does not help), and/or:

Suan sao rhen tang tablets/pellets, plum flower brand (5 tablets just before bed), and/or:

Te xiao zao ren an mian pian (sleepeace) tablets/pellets, (5 tablets just before bed), and/or:

Glycine, 125 - 375 mgs daily, and/or:

Tryptophan, 1,000 mgs just before bed, and/or:

Gabapentin (prescription), as prescribed.



Personally, I use melatonin (anywhere from 3 - 5 mgs) and Tryptophan (1500 mgs), and valerian (1,000 mgs) for me to be able to sleep every night for at least 5 hours.

JoanJet, the information that Traveler gave you is the same that I have from my Buhner book. Thanks Trav!

I am now using a different Ashwaganda and it is working very well. I previously used Sage Women Ash. tincture and am now using Planetary Herbals full spectrum Ashwaganda tablets. I take two about an hour before bed. They are 570 mg. tablets. It is even helping my husband. I will get my email set up on here. I took it down because I changed emails and just never got it going again.

I was using a cheaper Ashwagandha (Swanson brand - which works, but it's effectiveness is lacking for those that may really need the help), but now that I've dropped my health insurance, I have enough money to get a brand that I tried before, but was too expensive for me to continue (twice the cost, but much more effective - Gaia brand.

I just ordered enough for a full month yesterday - and I'm excited to get it and get started! It was very helpful previously for me.