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This Is What Neurological Lyme Disease Does To The Brain 

3/3/2016

90 Comments

 
Sleep is so vital to healing and so vital for the body to work properly. It's also an escape from the pain and struggles of each day, and a place where for a brief period I feel nothing. The irony so often with a chronic illness is that sleep is also the hardest thing to come by. You would think that it's just a given if you're tired, you sleep. But so often that just isn't so simple. Most often insomnia creeps in, due to an issue with the adrenal glands & hormonal systems which are disrupted with many chronic illnesses. Other times it's painsomnia, which is the inability to sleep due to pain. And the last category, which applies in my case now, is the inability to get rest because my brain just won't let me.

I talk about a lot on my blog, and I'm always really open about everything I experience. But sometimes I'm not, and it's because some symptoms I can't fully understand. For many years I have been dealing in varying capacities with what I loving call "Neuro wake-ups." It's a sweet way of saying frontal lobe seizure, but I hate the "S" word. I don't like to throw it around out there into the universe, because it's an intense word and it has such a polarizing feel. I guess a part of me just thinks it carries a stigma and I don't want to go down that road by attaching it to myself. Denial? Fear? Perhaps both. But that's besides the point, because it's what is happening. These occur at night when I fall asleep, but sadly they don't occur without my knowledge. I wake up to them and very much live through them.

These "neuro wake ups" vary in intensity from night to night, but overall as the years go by they have gotten much worse. I can't seem to find a link to it, there is no rhyme or reason for it. Some nights I won't have any episodes, and other nights I will have them all night long (10-20). Some nights they are very minor, other nights they hit very intense. Some nights they will stop happening after 3:00 A.M, and other nights they will continue on until 10:00 A.M. The point is, lately my nights have been the true definition of what most people call a nightmare. I average about 3-4 hours of sleep a night if I'm lucky, and that's only in the morning/afternoon. It takes a toll on my brain as well; these "episodes" leave me feeling very groggy the next day. I can't read, write coherent sentences, or get my thoughts out like I wish I could. It's like someone stuffed my brain with cotton. Alas, my blog has suffered greatly as well as my ability to respond to emails. I often document my episodes in journal entries, and after much though and deliberation I decided to share some of my inner-most entries describing various neurological episodes I've had over the course of the last month. I searched for years to find someone else out there who experiences what I experience and HOW I experience it, to no avail. Because my episodes present so oddly, I always felt like an outsider that no one could help. Traditional methods of treatment do nothing for me. It's my only hope that by sharing this, although it's kind of dark, that someone may read this one day and not feel so alone.

Journal Entry, February 3, 2016 - 4:13 A.M
I lie here begging for sleep. My brain feels like someone ran a cord from a faulty outlet into my brain stem, and it's misfiring, sending zapping shocks. I am utterly exhausted, but when I shut my eyes and fall asleep I get hit with waves of jolts and brain zaps. The zap starts in the frontal cortex and I feel it spread through my brain and trickle down to my stomach where a contraction starts up and I feel simultaneously like I will be sick and if I am gasping for air. All while I'm partially paralyzed and partially flailing my arms to try to breathe. My heart rate shoots up, I'm dry heaving, and as the feeling slowly passes my body trembles and I'm drenched from night sweats. Eventually this all eases, and I am exhausted. Right now, I am exhausted. It's unrelenting. No amount of exhaustion can bypass them. No amount of distraction or deep breathing can suppress them. I know when I go back to sleep it will strike again... this was the 3rd attack of the night. I want to sleep, but what do I do when I know sleep is a scary place?

Journal Entry, February 27, 2016: 5:40 A.M
My brain felt weird. I was still awake when I got dizzy, and then the front of my head got weird, like it was tingly & frontal cortex had a pressure on it. I tried to get to sleep but I woke up at 4:45 gasping for air and not knowing where I am, lots of nausea, and very confused. I panicked. I knocked over my water trying to get help. When I finally got my bearings I was covered in sweat, my heart rate was up to 140, and I was scared. I am still scared. I didn't recognize my own room, and that freaks me out. It feels like someone took my brain captive and is playing a cruel game of tug of war. I desperately long for sleep...

Journal Entry, March 1, 2016: 6:30 A.M
I never want to experience that again. I don't know what it was, but I don't want to have to ever feel it. I laid down to sleep rather early tonight, and awoke to my usual frontal lobe seizure, full of gasping for air, heart rate spike, dry heaves, panic, sweats, etc. But this time, something was very different afterwards. I was awake, but half of my brain was asleep. I can only describe it as, half of my brain was awake, and half was not awake. It was a terrifying state to be in. I got up and walked around, I drank a glass of water, but this disassociated out of body feeling persisted. I could not snap out of it. But when I tried to go back to a full sleep my brain wouldn't let me do that either, triggering frontal lobe attacks each time I tried. I was trapped in this bizarre existence where I couldn't wake up my brain. Eventually, after more than an hour of this cycle I managed to fall into a deep sleep, and this time when I awoke I awoke fully. But my frontal lobe felt very strange... like it was being tickled by a feather in the inside. It still feels that way. When I relax I feel like I am fainting, even though I am lying flat... Sleep for tonight eludes me.

_____________________________________________________________________________________________________________________


I put all of my faith in God's hands, always. But I am human, and I find myself stumbling when worries and thoughts consume me. It feels like my waking life is full of pain & the only escape I have from it with sleep is also full of pain. I waver with worry on some days, wondering if anyone will ever be able to fix my brain, and repair the damage that the Lyme disease has done to it. Can it be reversed? It truly feels sometimes like my brain is not my own, and it's a scary sensation to come to grips with. I know this post was a bit "darker" than most, but I didn't want to continue with silence on my blog. I felt like it was time to open up about this topic, and put my fears aside.

xoxo,
Christina

90 Comments
Melanie
3/22/2016 02:21:32 pm

I am praying for you. I'm battling Lyme disease and co infections as well. I came across your blog at the start of my fight actually....it was your article on fatigue that spoke so loudly to me. Your words made sense when I couldn't express my own! That was the start of everything. Anyways, so sad people have to go through this. Never knew any of it existed. Hugs and prayers for healing and strength for you. Melanie

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Christina
3/26/2016 04:50:05 am

Hi Melanie! Thank you so much for taking the time to read and leave a kind comment! I'm sorry that you too understand what all these things feel like, but also its that sense of community and not feeling so alone that has helped me greatly too!

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Michael
1/9/2020 09:07:07 am

Hopefully you see this as it's been a few years.

Your original post, is something I'm am going through right now (even as I write this). The brain zaps won't let me sleep. I've been to the doctors and they're all stomped. They have gave me anxiety medication. I mentioned lymes disease to them but they brushed it off. I've had this for about 4 years, but the past few months the night attacks, zaps are getting more violent. Really don't know what to do

Christina
1/27/2020 01:19:04 am

Michael,
Hi there! Would you be able to email me? I'd love to chat with you, but it can be difficult to do so in the comments! [email protected]

Melissa
3/26/2016 03:32:11 pm

I have found that Glycine by Thorne is very helpful for sleep. You can take it when you wake in the night (I usually take 4 but you can take 6 or 8 that doesn't work). You can also take it an hour before going to sleep if you are generally not sleeping well - and still take it if you wake in the night. Open up the caps and dump the powder into your mouth for it to work quicker. It's natural!

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Christina
3/26/2016 08:49:00 pm

Hi Melissa, thank you so much for that suggestion I haven't heard of that before & im quite intrigued. Will look into it, Thank you! Have a great day!

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Susan
8/20/2016 02:19:11 pm

I have these brain "swoosh zaps" also....they can go on all night. Sometimes I can sleep after one or two. They happen as I am dozing off. They went away on doxy and zith....now that I am raising the lamasil they are back with a vengeance. Is this Protozoa 1953 or Lyme or bartonella? What are your ideas? Many thanks. Susan

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Susan
8/20/2016 02:21:50 pm

Oops. I forgot to check the box for emails to post if I get comments....here goes....

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Christina
8/20/2016 10:45:56 pm

Hi Susan! Hmm I have been trying to figure it out for so so long myself. I don't think it's Bartonella & I don't think it's Lyme because when I treated both & other things improved, this did not. I suspect either Proto is the culprit or just neurotoxins in general. I don't know specifically, but if I ever find out I will definitely share !

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Matthew
4/5/2017 05:16:15 pm

This is the feelings I get to a t , you described it so so well
Has anyone found out what's the actual cause I'm thinking Bart and borrelia neurotoxins or from the fibrin blocking this and blood flow to certain parts of the brain isn't good .

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Christina
5/5/2017 09:44:35 pm

Hi there! That could definitely be it, I've wondered that same thing myself before!

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Debbie Cannon
5/4/2017 01:57:33 pm

I do understand what you are going through and my heart goes out to you. I don't have any illness and I'm not on any medication but for the past two weeks my nights have been awful. It started off with lurches in my stomach (like when you remember something you're dreading) but these began to happen 10-15 times a night but I wasn't dreading anything. Then I began to hear very loud roaring in my head like I was right next to a jet engine. Then after a few nights all these feelings then were accompanied by really strong vibrations in head and face. It literally feels like my head will explode with the pressure. I hate going to bed now and I do feel so sorry for all you guys who are suffering too.

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Christina
5/5/2017 09:43:37 pm

I'm so sorry to hear that! These scary issues that come on and are so bizarre can be really difficult! I pray that you can find the root of it or that they stop so you feel better soon!

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Emma
9/22/2017 03:15:32 pm

Hi do you still experience this as you are falling asleep? I get it every so often. I have not been diagnosed with Lyme or even tested. I'm wondering if it ever stopped or if you have figured out what causes it? Thanks

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Christina
9/30/2017 03:27:54 am

Hi there! I have yet to really find a specific link yet, but on my better days (when lyme symptoms are better) then these episodes are much fewer or don't occur. So it's definitely linked somehow for me, but until I'm 100% well I might not know what the cause is. It's very mysterious to me but I think it has to do with inflammation or toxins in some way.
I wish you the best of luck in getting a diagnosis, whatever it might be for you! I'm happy to chat if you need someone to talk to.
-Christina

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Brian
9/23/2017 10:09:50 am

I have these too. They've been getting worse and more frequent over the years. I feel like I experience them more in my mid-section around my sternum. But I guess I sometimes feel them in my neck/head sometimes as well. I have not yet been diagnosed with Lyme (doing testing now) although I may have mold toxicity. I was also "floxed" by taking some Cipro a number of years ago although the brain zaps didn't start until a couple of years later.It's also really taking a toll on me. Lately, it's caused me to start having pretty severe anxiety especially in the morning and throughout most of the day. I'm looking into getting a medical marijuana card to see if some strain of pot (maybe I high CBD strain that might address inflammation) might help. If you Google "sleep vibrations" or something similar you'll see many online forums in which people describe a similar phenomenon. Many reports of this in Lyme forums

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Christina
9/30/2017 03:20:41 am

That's so interesting to read other people's accounts online re: sleep vibrations! I'd say it's not exactly what I'm experiencing, but still very interesting to read about. My episodes are more of a seizure than just simple sleep vibrations. However the cause could definitely still be the same trigger such as inflammation or toxins. Very intriguing to think about, and it's very likely that the right strain of medical marijuana could be useful.
What kinds of symptoms do you experience at night?

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Brian
9/30/2017 09:17:08 am

I just wake up multiple times during the night with vibrations like I described above. Although lately, I tend to wake up at about 3am with some vibrations and then I find it difficult/impossible to go back to sleep. This is a bit of a change because I used to fall back asleep and then have the vibrations. This would repeat multiple times during the night. I'm not sure which was better. I might be getting slightly less sleep now, but the vibrations were pretty debilitating so having fewer of those events is good. I no longer have the vibrations as I drift off to sleep when I first go to sleep for the night so I guess that's an improvement. And lately, I've been having lots of anxiety when I finally get out of bed in the morning. I've been keeping a log of food, supplements, weather, etc. and strangely enough, the anxiety might correlate with when I take magnesium glycinate before bed. Very strange since magnesium should have the opposite affect.

Ive
10/19/2022 04:06:49 pm

My daughter gets this very badly too. The doctor tells us it's classic Bartonella and offered siezure medication to help stop it.

Christina
10/2/2017 08:37:24 am

Hmm., that is definitely very interesting about the magnesium. I have read that there are certain parasites and bacteria which feed off of magnesium. So there are a few patients I have spoke to who tend to feel worse when they take magnesium. The reason being that the parasite or bacteria feeds off of it and gain strength. It might be worth something looking into?

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Chris
10/14/2017 07:47:29 pm

You are confusing magnesium for manganese.

Christina
10/14/2017 08:17:29 pm

Hi Chris! I know that lyme depletes manganese but this also applies to magnesium.

"The chicken-and-egg cycle that Lyme patients experience is because of the disease's bacteria's dependence on the essential mineral."
Source: http://www.newsmax.com/t/newsmax/article/738173

Fritha
12/15/2017 02:16:22 am

I can’t thank you enough for publishing this. I’ll have to find your blog as I was only googling Lyme night zapping brain! Nobody knows what I’m talking about with this!!! Drs think I’m crazy. My Lyme Dr didn’t have a clue either. He sent me to a western Dr to help but all the medications they gave me made it worse...except lorazepam. Which I first took because I got severe anxiety when this got really bad last year. I used to only wake up once a night so I never thought about it. I figured it was hormones. As my journey to treat all my other symptoms came together I was diagnosed with Lyme this summer. But the zapping went away for months and now it’s back. It’s one of my worse symptoms!!! Lorazepam is so bad for you Drs won’t let you take it much so it’s hard to know how to deal with it. I never thought of it being seizures. I was ready to go to a sleep clinic and spend even more money on treatments. But as it slowly gets worse I realize it’s not sleep apnea. Just now I was half awake half asleep as you described and a light flashed. As if someone turned the light on and off. Then my whole body spasms, my heart races, I feels like I can’t breath, and I’m wide awake!!! It’ll happen to me every time I fall asleep when it gets this bad. It makes me feel insane!!! I get scared to go to bed. I don’t want this to come back. I tried to treat my Lyme with intravenous silver this summer just praying I would be healed but I don’t think it worked if these are back. I just got diagnosed with three staff infections in my head and got on here to see if infections could cause this. I’m in Colorado and marijuana helps when it’s mild not cbd alone though. But every night is different. I don’t know why it went away last time. I was looking into hypnic jerks and trying all that. I thought maybe it was a depletion in minerals as they helped but I think I started the marijuana then too. I homeschool two kids and this is a nightmare. Other symptoms are bareable compared to this. I too used to look forward to the comfort of my bed... I can’t even sleep with my own husband it’s so bad. I’d love to find someone that got answers and meds to help. I hate pharmaceuticals but when I get this bad I don’t care!!! I’d love to get in touch with you. I tried to blog but I’m computer illiterate when it comes to that and I couldn’t make it work. I’m now treating myself with Rawles herbal protocol. It was just pro cautionary as I’m still hoping the silver worked. I saw the little buggers dying in a microscope of a friend during the treatment. I’m going to look into seizures and medicine to help. I can’t live with this when it goes on all night. I’ll let you know if my marijuana works. I haven’t tried it long for this hard zapping but it definitely helped with the little ones. I just used liquid cbd with thc at 50mg each and would sleep often. Now I’m doing my vapor though. Smoking it makes my head race so I know that doesn’t help. Anyhow... I hope you find healing soon my Lyme friend. I will pray for you.

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Christina
12/17/2017 08:32:16 pm

I'm so sorry you are dealing with this too! I have yet to find a concrete answer for it. It varies in intensity night to night, and I have yet to find a guaranteed connection, although I have a theory after years of charting my symptoms and such. My strongest theory thus far is a link with histamines. I struggle with MCAD (mast cell activation disorder) which leaves with me high histamine levels. You might want to look into this, as it's quite common with those who suffer from lyme & other co-infections. I found a Probiotic called "probiota bifido" that lowers mast cells & when I take that orally it often seems to help. I'll link it below for you. I have actually found that doing a Probiotic retention enema with it works the best. Again, while it's not always 100% it has worked the best for me overall in terms of actually being able to link it to relief. I suspect on days when it doesn't work as well I'm eating something which my body is reacting to and the histamine level is just too high. Here is the link if you'd like to try! http://amzn.to/2iBERMF

I wish you all the best!

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Brian
12/18/2017 12:48:46 pm

I wonder if some sort of gut dysbiosis could be causing this. The probiotic you're taking could be helping to kill off some bad gut bacteria although your histamine hypothesis also makes sense. I've posted about my sleep "vibrations" before. In my case, they seem to come from my chest right around my sternum which is why I thought they might be related to my hiatal hernia (I still think this is possible). I just recently saw a gastroenterologist who was pretty much the only doctor who didn't look at me like I was crazy when I described the vibrations. He said he's definitely seen this symptom before and attributes it to some sort of esophageal hypersensitivity. I almost cried when he said he's seen this before and didn't look at me like I was nuts. In my mind, this could be another type of overly sensitive central nervous system which is what I think we're all experiencing. I just finished a manometry and pH study which came back mostly normal. He said that the number of measured reflux events was "high normal", but my overall score was well in the normal range. And my reflux events didn't correlate with my vibrations events during the night. His treatment for this is typically low dose acid suppresants and/or a low-dose neuromodulator such as gabapentin possibly combined with cognitive behavioral therapy. I'm not sure what CBT could do to help this and I'm not thrilled with either of those drug solutions, but I'm willing to try some or all of those solutions just to get some quality of life back.

I just started seeing a new functional medicine doctor who is doing additional tests for Lyme and mold. To date, mold is the mostly likely explanation since I've already tested positive on certain tests that are associated with mold. All of my Lyme tests have come back negative or "iffy". The new doc is running a full Igenex co-infection panel anyway just to get additional data. Both Lyme and mold can be responsible for numerous nervous system issues.

He also ran a heavy metals test and it showed high levels of lead which can also cause CNS issues.

I'll be sure to report back when/if I know more.

Robby
12/8/2020 01:16:21 am

I'm leaning towards a gut biome/inflammation thing. maybe try cutting refined sugar and carbs out of your diet and see what happens

ashling
7/8/2018 08:11:45 am

hi christina, i have been looking through the internet for something that describes the sensations i have been experiencing! and this describes it perfectly ! i have had lyme disease for nearly two years and treated alot of my symptoms successfully with biomagnetism- this is prob one of the worst symptoms and the one thats taking ages to shift can you tell me how this is for you now ? i wonder if it will ever go or be something i will be dealing with forever thank you so much

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Suzie
9/4/2019 11:57:49 am

Hi, I’m so sorry you suffer with this also. I have been sick for over thirty years. Do you experience the electric shocks in your head and are you doing biomagnetism for those and what exactly is the treatment? Thank you so much. Suzie

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Brent
7/31/2018 12:06:33 pm

Hi Christina, I have the same "nocturnal seizures" with convulsing down to my stomach as you describe. I have been diagnosed with Lyme Borellia with positive lab tests so I assumed it was the borrelia in the brain.

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virginia borrelli
8/7/2018 06:06:52 pm

I have terrible nights also

only half my chest works and it is full of pain even when I dream
There is no escape for me either in the day i have pain also like a soreness and like there is an animal in there

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Jack
9/1/2018 01:48:15 am

Thank you Christina and everyone who posted. This has happened to me for a little while now so finally I'm looking into it. I am an herbalist and I will find the way to eliminate it all. Very interesting mold, which is not talked about much in Western medicine but is everywhere and is a really big deal. Mold wants things dead and it's nothing to play around with!! I had a hunch it had something to do with mold... I'm excited to find the answer and the cure and to share it with everyone on this thread so we can stop getting these zaps! I'm very grateful to have found y'all, my email is [email protected] if anyone ever wants to talk. I'm going to look into the manganese too. We will figure this out!!!

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Kate
12/3/2018 09:04:55 pm

Hi! I'm so glad I found this post as I too have experienced these frightening nighttime epiosodes. I have been treating Lyme and babesia for the past 2 years (first with antibiotics and now homeopathics). I get these nighttime feelings randomly, not every night, but have noticed recently that they seem to flare up every 3 to 4 weeks or so. I wondered if you ever figured out what was the cause of these feelings for you and if anything has been helpful?

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Robert
1/13/2019 07:56:20 pm

Thanks.

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LeighAnn Medcalf link
2/1/2019 02:22:10 pm

I was diagnosed with cephalitis Lyme 4 yrs ago I had seizures almost daily for 2yrs. I’m better now better then ever and no seizures or flare ups in a yr and half. I randomly had a pretty bad seizure the other night ( I’ve beem very well) I did have my grand baby that day so a lot of emotions. I’m so scared that I will have another one what are y’all thoughts ?

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Suzie
2/3/2019 12:28:14 am

I’m sorry for what everyone has been experiencing. I suffer with electric shocks and they can be all day and subside at night. I live in Boston but went to NY to be tested for Lyme because this specific Dr. is Lyme literate and I guess Lyme can hide in your body and not show up and it has to be sent to a specific lab. The electric shocks are brutal, it’s as if I am being struck by lightening and in one of those bug zappers. Not one Dr. can help , if anyone gets these from Lyme please let me know. Thank you, Suzie

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Kel
2/19/2019 12:46:11 am

Suzie, i am also from Massachusetts originally but see a dr in Mount Kisco Ny for my Lyme. I get the electric shock type sensations too. I’ve had relief with antibiotics, but in lieu of the dreaded herx reaction- mine was headaches, palps and severe muscle pain and aching. I also had to drastically increase my sodium/salt intake to feel better overall. Sorry to everyone for what you are going through, we are certainly gods strongest warriors.

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Suzie
6/23/2019 09:37:31 pm

Thank you Kel, I just need some relief and you did not experience The Her ?Thank you and yes we are so strong!!!

Suzie
9/4/2019 12:04:40 pm

Hi Kel, I’m so sorry I just got your message. I haven’t been on this site in awhile. I’m so sorry you suffer too. I didn’t want to take antibiotics due to the herx reaction , how are yours now and how much salt intake do you need? Can you e mail me at [email protected] Thank you very much, Suzie

Tim
6/27/2021 10:03:23 am

I've told doctors for years that when I get antibiotics the night time electric shocks go away for 4-8 weeks. Why?

debbie
12/22/2019 04:59:49 pm

Hi. I am getting exactly this. All began on one day 6 months ago, electric shock style pains in ears, eyes like scratches on surface and "blob" landing in them sensations, sharp electric shocks on scalp. Stabbing pains over the whole of my body including soles of feet. Thought it was the enemy's arrows ???? - as a Christian (loving the Lord Amen.) Not certain. Only know that the sharp pains correspond to muscle weaknesses in the body or face shortly after they happen. Is a slow brutal tortured living death. Sorry to be so blunt. Come back migraines, all is forgiven. Don't know if I have Lyme, but my sis thinks she has it, and has similar, albeit possibly milder symptoms. Who can tell, unless you are in it. Interestingly, I slept perfect unless I woke needing the loo up to 45 years age, before this began. Sleep went out of the door with it beginning. Half a zopiclone tablet from a sympathetic doctor does the trick alongside an antidepressant, a lavender capsule and the occasional weeping fit in the kitchen as I try to hide the terror from my family who are fed up with me now after 6 months of these pains hitting me every day, weakening me and slowly claiming any gentle joy I ever knew. Wishing you all to get better from this soon. Yes the shocks are real, getting anyone to believe they are is another matter. I make it to Church to praise our King less now, if at all, but the intense love remains when I do. Love to you Suzie in your pain, if you are struggling with getting any help or understanding in this, I'm there, with you. Plead on the Lord when they happen. Sometimes when I do that the pain doesn't turn into worse, like weakness. I have pleaded on the Lord when I wake up nauseous about to vomit, and it has been taken away for that episode. Never stop pleading on the Lord, My inner corner of my eye swelled once when I was driving, could see it in driver mirror, began to scream, oh no, I'm going blind to the for a couple of minutes, pulled up in the car and looked again to find the swelling completely gone, eye back to normal. I'ts a miracle. I said. Praise God Amen. Still it keeps coming back, daily, so just never stop pleading. Love Sisters, Brothers, in Christ.

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debbie
12/22/2019 05:13:59 pm

Hi Suzie. I got these shocks too. They began one day 6 months ago on my scalp, face, in my ears and over eyes. They are happening now to my entire body including my heart. Thought they were the enemy's arrows??? as a Christian but unsure, sleep went out the window the same day they started. Can't convince anyone around me whats happening to me. Sometimes I wake up feeling "choked" other times, nauseous like I'm goona be sick. I keep on pleading with the Lord. Sometimes the pains don't turn to anything. Other times they become muscle weaknesses in parts of my body. My hearing is damaged since it began in one ear, My vision sometimes distorts and then returns. I have seen one eye shrivel slightly in the socket (noticeable by others) only to have it back normal the next day????? My heart and breathing have slowed only to pick up again, pure torture. I keep on placing my faith in Jesus, perfect Son of God. Love Him. Goodness know where this all ends. I have a baby of 1 and an 11 year old disabled boy, desperate that I lose my faculties and can't care for them. Possibly lyme and counter infections, but the shocks follow some kind of pattern that doesn't seem random. Wish you all better soon Brothers, Sisters. Wrote this again, unsure if last one posted.

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debbie
12/22/2019 05:18:04 pm

I have these too. shocks over face, eyes, head, ears, heart and body. Killing me slowly. Started one day 6 months back, sleep went out the window with it too. no idea where to turn. Thought it might be the enemy's arrows as a Christian, but now looking at lyme. hope you all better soon, cant seem to get it to post. Love in the Lord.

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debbie
12/22/2019 05:20:46 pm

So sorry. 3 times I tried to post, first two times, i saw nothing, then all 3 at once. sorry.

Seth
6/15/2021 06:17:38 am

Hi Suzie

I'm also in Boston. Let me know if you want to chat.

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Gina
2/9/2019 09:40:16 am

I was diagnosed with neurological Lyme in 2017. After a year of treatment, I started to have dreams again, which was very strange, because I went years without dreaming at all. (Maybe an occasional nightmare). Night/day sweats are gone, heart rate is way down. My only concern is if Lyme returns, and if there is any permanent damage that lingers in the brain.

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Kel
2/19/2019 01:14:32 am

Thank you for sharing Gina, it’s nice to hear when people are doing better. Don’t let your guard down, I did when I was nearly finished treating once and I relapsed for a few more years. Personally I’ll likely stay on a maintenance dose of something for life just as a security blanket. Either way, happy for you

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Lesley
10/30/2024 12:11:30 pm

For the year, what did you use to treat your neurological Lyme?

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Nichole
2/11/2019 12:45:50 pm

Hi. Christina. Thank you for sharing your experience. I also have very similar symptoms as you and it's torture. Just wondering if have discovered the cause or cure for it? Thanks so much.

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Rick Stoutenburgh link
3/9/2019 04:44:30 pm

I started abx on 11/10/18, afew weeks into the treatment these waking nightmares returned. For the 6 months before I could not remember them.

In November I was diagnosed with Lyme,RMSFEVER, Bartonella, MCARS, and Babesia. My LLMD elected to treat first 3. I believe the Babesia flared up leading to the return of waking nightmares.

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Lance
12/10/2019 07:03:22 am

Yea lyme brain is not fun at all! Waking up tremoring all the time, or what seems like ghostly experiences but really you're just being punked by this spirochete. Hopefully you're finding some relief of the symptoms soon if not already. I know I'm considering the ozone 10pass at this point since my co-worker it has helped wonders with.

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Michael
1/9/2020 09:50:44 am

Hey Christina, just wondering if there are any more updates? Your original post describes what I'm going through to a tee. I've had it about 4 years, but past few months the zaps are more violent. Doctors have always put it down to anxiety, and prescribed meds for this. When I suggested lymes disease he sort of shrugged it off, bit if a taboo subject in the medical world. I'm going to Phone a different clinic tomorrow to get tests done. Lying here 3am afraid to sleep cause I know another attack awaits. Have had 6 tonight already. With each zap I jump up convinced I'm having a stroke

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Esten
2/5/2020 10:16:36 am

Hi Christina. I have some of this symptomes too, and I hope someone can help me. I tested for Lyme, and still waiting for the result. It started 1,5 years ago with tinnitus and hyperacusis. When Im going to sleep, and starts to "drift away", I get this "neuro wake-up, buzzing noise for a split of a second, It feels like my ears/head are hypersensitive to very low sounds or other external impacts, like my head are "jumpy". It is actually enough that I scratch my finger under the pillow when im about to sleep, and i wake up from the this with a "electric peak buzz". This happens every time I start to sleep, and have to take sleeping pills to be able to sleep. Im from Scandinavia, so sorry my english is poor :)

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Darren
11/12/2020 01:48:56 am

I have this exactly the same, thanks for sharing!

Regards,
Darren

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Conny
1/8/2021 04:16:46 pm

Hey Esten, I need your help, please.

I have almost exactly the same symptoms as you do have. Did you find out what disease you are suffering from and what can heal it?

In May 2020 I lost hearing in my right ear and tinnitus, hyperacusis and diplacusis occured. I also got these "swooosh zaps" in my brain (on the side where I lost hearing) every time I'm dozing off and even when there is a noise. I couldn't sleep for months. By now I take a sleeping medicine but this doesn't treat the zaps and no doctor can say why I lost my hearing and sleep and these brain zaps and very loud tinnitus occure. In fact they don't believe me.

Thank you very much in advance for your reply!

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Barbara link
10/24/2022 09:58:36 am

I have your symptoms exactly, to a T.

Veronica
2/8/2020 04:30:25 pm

Hi Lance, regarding that 10pass ozone... can your co-worker elaborate on the effects of it? I've tried the Ozone UVBI (ultraviolet blood irradiation therapy) and felt amazing beyond belief for about two weeks – it was as though all sickness had been removed from my body and I had been renewed, I'd actually forgotten what it feels like to be well; 2nd time I tried it was "eh". Can't figure out why. Maybe the BB were in a cystic form at the time. Can't help but wonder how the 10 pass would be...a little afraid of it though...heard something about chest burn.

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Tawnya
4/9/2020 08:41:54 am

The minute I open my eyes..the swooshing in head starts as does headache. I hate waking up .

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Michael
4/9/2020 09:16:50 am

I got tested for Lymes it came back negative. I wish I had Christina's description to go with to the doctor to because I couldn't explain it. It is like being electrocuted or a stroke while trying to sleep. The fact my Lymes test came back negative, leaves me with wtf?! .. so I have this theory..I've had this for 13 years I think.. I was always told it was anxiety or stress and not to worry.. I wasnt anxious, not more next to the next person. I have to put it down to brain chemsitry. When our melatonin tells our brain to sleep its in fight or flight mode --> electrocutes me --> epilpetic fit .. how can you explain that do a doctor? Mental.. .. Get drunk, it doesnt help.. you wont get get the shock.. keep well

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Robby
12/8/2020 01:18:28 am

I get mine after a drinking binder and/or weening off anything

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Teek
4/11/2020 07:47:25 pm

Hey! This is the only thing I have found that is close to what I'm experiencing. I'm almost in tears right now. I'm so over the horrible nights :(
Can anyone else say that during these attacks their whole body gets this awful tingling/ pulsating? Especially in your chest, head and legs?
Sometimes I'm so exhausted from it that I just keep falling asleep and BAM... Another attack rolls in. This happens all night and sometimes I'm sure I'm going to die.

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Sam
5/16/2020 07:44:12 am

I’ve been dealing with this for 6 weeks now. It always happens at the very second that im about to fall asleep. A jolt to my brain and then my heart rate spikes. It keeps happening all night long whenever I’m about to fall asleep. I’m left just laying awake all night because it won’t let sleep. I can’t even go to the Doctor anymore as I’ve gone over and over again and I feel like an idiot going back again when all the previous test results are fine. If anyone finds a solution, please do share.

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Anna Helmuth link
6/6/2020 11:02:00 am

Thank you for this blog. I can relate with a lot of it. I have Lyme and seizures. I can never sleep during the day. And I feel sick until I fall asleep at night.I get the shock and heart palpitations. I have been trying to look into the vagus nerve and hiatal hernia. I think this might be a missing puzzle to why we have so much when we lay down? Not doing very well right now so I can't study. But want to look into that. Gods blessings and mercy on us all!

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Chris
6/25/2020 02:32:45 am

I’m happy I came across this. About a year ago, I lost hearing in my left ear randomly and it is now filled with hearing sensitivity and tinnitus. Just as I’m falling asleep, it feels like every bit of sound zaps me and these zaps can happen up to 20 times a night, leaving pain in the back of my eyes. These are some nights when it’s bearable but when I’m having a Tinnitus spike, the zaps are frightening and unbearable.

Reply
Conny
1/8/2021 04:20:39 pm

Hey Chris, I need your help, please.

I have almost exactly the same symptoms as you do have. Did you find out what disease you are suffering from and what can heal it?

In May 2020 I lost hearing in my right ear and tinnitus, hyperacusis and diplacusis occured. I also got these "swooosh zaps" in my brain (on the side where I lost hearing) every time I'm dozing off and even when there is a noise. I couldn't sleep for months. By now I take a sleeping medicine but this doesn't treat the zaps and no doctor can say why I lost my hearing and sleep and these brain zaps and very loud tinnitus occure. In fact they don't believe me.

Thank you very much in advance for your reply!

Reply
Glenn Tourville
7/22/2020 09:34:58 am

Kristina, I have some thoughts and suggestions possibly for you. You may have already tried them. I believe I have fixed my brain zaps. I have not had any for over a year now.

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Christina
7/23/2020 01:33:05 pm

Glenn,

Yes I would love to hear what worked for you! And I’m sure it would also be so helpful to others in the comments as well, so I would love for you to share! :)

Reply
Patricia Procino link
8/1/2020 09:13:58 am

Hello,

I'm so thankful for this website & blog. My head zaps are exactly as everyone describes. I would be so grateful to learn what we can do to stop these zaps from happening upon falling asleep & wakening. Blessings to all!

Reply
Jodi Trent
8/30/2020 09:03:35 am

My husband has been having brain vibrations which then lead to chest anxiety and then to stomach nausea for about 6 weeks. He just finished 6 months of Disulfiram and is being treated for Bart. Hard to see him go through this and it doesn’t seem like any of the posts I have read have a “fix” or “answers”. Very disheartening and scary!

Reply
Brad
9/14/2020 07:14:53 am

I’m going through the exact same thing. I’ve had every blood test that can be done (Including Lyme), CTs, MRIs, you name it. I’ve been to every specialist possible and leave without answers. Anxiety has been thrown around a number of times. I have definitely had panic attacks throughout all of this. But I don’t know if the anxiety initially led to the symptoms or if the symptoms are causing the anxiety. I suppose it is a vicious cycle. I can deal with the daytime stuff but The night symptoms are scary And lack of sleep only feeds anxiety and eventually psychosis. Not fun. In general, I feel like my entire body is under attack. I’ve experienced many of the night episodes that have been mentioned here - vibrations, zaps, roaring sounds, flashing lights, when my eyes are closed, weird pressure sensations etc. During the day I have a handful of regular things I deal with. Tinnitus, pressure in the ears, pulsing sensation in the temples, eye pain, a burning sensation in my throat when I breath in (this has been there for 6 months and was the symptom that started everything), pains, tingling and burning sensation on arms and legs. Not sure who else to talk to and I’m desperate at this point. One plus is I’ve hit max out of pocket with my insurance :)

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Rhonda Jamison
7/2/2021 10:06:33 pm

Hi Brad - not sure if your gonna see this - as it is July 2021 - but I had all these same symptoms a year ago, especially while going through Neurofeedback to *calm* my Sympathetic Dominance. My qEEG showed I was NOT making Alpha waves and my Beta was too high. This was the result of really HIGH Cortisol and Adrenal Fatigue. Since going thru 40 sessions of NFB and 3 Neurologists, the *pressure* built up as CSF fluid - Intercranial Hypertension. That pressure was up above my sinus (sphenoid region) *only* only the Right side. I never had *anxiety*, always a calm Type-A personality... but *something* in my brain chemistry did cause crazy anxiety attacks during a season of intense grief stress. Our bodies have "stress memory" even 2 years POST trauma. My qEEG expert asked "What happened 2 year ago?" - and that's when I realized the stress my body was holding. All that to say is... that these crazy symptoms, whether we test positive or not (all my tests came back negative) are indicative of Lyme or co-infections - as I've just learned. I am still experiencing, as from the very beginning, nervous system throbbing that is affecting my Vagal nerve (CNS) that goes down into my spinal column. But as the brain tries to *find* balance (HPA axis), the brain zaps, shivers, hyper-arousals are all the nervous system. Find a good Functional Medicine Lyme-literate practitioner - that the ONLY avenue of getting to the bottom of it all. Hoping to heal myself, too!!!

Reply
Sonia Masters
10/11/2020 02:49:31 am

For me these brain zaps turned out to be a fluid balance issue. Stop drinking too much water. Stop drinking around 5pm. This will give you time to go to the toilet alot before bed. Take a pinch of salt if the zaps start. It is like odema, too much fluid is on the brain. It needs to be balanced with salt. Sea salt. The next thing is trying to work out why the odema. Could be heart, brain or kidneys not functioning right.

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Rhonda Jamison
7/2/2021 10:11:10 pm

Sonia, when I started feeling *fluid* in and around my temple and back of my head, that's when I realized this *pressure* was excessive CSF fluid, or IIH, Idiopathic Intercranial Hypertension. Neuro-Lyme, an infection, is another root cause of IIH... and can lead to a CSF cranial leak (as it happened to me). Dandelion Root Extract is used all the time by CSF leakers. Getting good hydration is a must though for those with these kinds of immune compromising conditions. All these symptoms are a sign of an infected nervous system. Dandelion Leaf Extract is amazing stuff!!

Reply
sue
10/11/2020 06:43:55 pm

I have been experiencing the brain zaps too. It happens mostly when I am asleep. It sounds like a bug zapper in my head and wakes me up. I also have waves of quick swooshing in my head that happen periodically that wake me up. I almost don't want to go to bed, because it might happen. It is very scary and I don't know what to do. I have had and MRI, EEG and hearing tests. They came back fine other than a little hearing loss and tinnitus. Praise God no life threatening issues were found. The sensation went away for a few weeks and came back. I am now having headaches which is not normal for me. My blood work shows no abnormalities. I drink lots of water. Any help or suggestions would be appreciated.

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Bri’Shon
5/6/2021 12:37:18 pm

Did it ever stop ?

Reply
Sam
10/26/2020 06:44:10 pm

OMG. I get these ALL the time, at night, when I try to nap, I’ll be stuck in the dizzying, vibrating brain thing, like paralysis but I can move but I feel trapped, or I wake up gasping for air like I stopped breathing. My chest is tight, and then I feel like I got ran over by a truck. I had NO idea what was wrong with me. I have lyme and Babesia, Ehrlichia, Rocky Mountain and prob more, but I try to describe this to people and they’re like ok you’re crazy! But omg I feel so much better knowing someone has this. How did you figure it out??? I am seeing an LLMD and I tried to tell them about this but they didn’t seem to have a clue. I even said it’s almost seizure like, and they’re didn’t know.

Reply
Laura
11/10/2020 11:38:06 pm

I have struggled with these brain zaps for just over a year now, on and off. I could never describe them to anyone except for saying it felt like my brain had a short circut or it "shorted out," so it was great for me to read through some of these blog responses and see different descriptions for whatever is I (and so many others) am going through. It is absolutely terrifying when they occur (always while I am sleeping; I've never had an occurrence while not sleeping). These zaps wake me up from a dead sleep with a giant gasp for air while I sit straight up in bed (reflex?). My eyes are pitch black for about two seconds until they can start registering what little light there is in the room at night. I've had multiple occurrences in any given night, and I find myself terrified to shut my eyes and attempt to sleep again.

After reading a bit online, I see that these can be linked to antidepressants, which supports my experiences ... for the most part. I have been struggling to find the right combination of anxiety and depression medication since I was 14 (I am 34 now) and I finally found a combination that works well for me - Bupropion (Wellbutrin) and Escitalopram (Lexapro). Lack of energy had a huge impact on my life, so my doctor decided to put me on Bupropion. There are three different release types of this medication - extended, sustained, and immediate. I was originally placed on the sustained release, which started a chain reaction of endless brain zaps. I informed my doctor about what was going on, how it was affecting my sleep, and how concerned I was about whether this could be an underlying issue (mini strokes or...). She switched me to XL (extended release), and once I had settled into a routine, these brain zaps seemed to occur less and less.

Not too long after I got into a routine, I started getting flare-ups of a facial rash that has popped up over the past 10 years or so (not sure what triggers this rash), called perioral dermatitis. My doctor thought it may be due to the amount of adrenaline in the Buproprion so she suggested I try increasing the amount of Escitalopram to counter this. I was game for trying anything - perioral dermatitis is irritating, painful, and makes me feel insecure. Long story short (Is it though? I feel like I'm rambling ...) the increase in medication wasn't submitted and I was without Escitalopram for about a week. During that time, I started getting the brain zaps again. In full force. Once again, after being on a steady routine for 3-4 weeks now, the brain zaps have been occurring less and less.

I can't say it is *entirely* resolved now that I'm on a steady regimen, as I still do experience this more often than I would like. I hate to say it, but it is somewhat relieving to know that I am not going through this alone; however, I feel wholeheartedly for everyone who does experience this.

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Mr M
12/2/2020 09:25:07 am

Isn't this common when you stop using an antidepressant?

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Natalie
12/16/2020 07:35:19 pm

Thank you so much for this amazing description of them Christina, this is exactly what I’m experiencing with late stage Lyme disease and I thought I was going mad as doctors haven’t a clue what I’m describing. But it’s exactly as you explained. Please tell me you or someone else has a cure for this symptom as I’m currently on my 5th consecutive night of them and have had about 8/9 hours sleep altogether. It’s killing me and I’ve been off work for weeks now 😢 is there a way of monitoring these? I want to be hooked up to a machine that will highlight each time is happens, for me it’s at that exact moment that your body goes from light sleep to deep sleep it jolts you awake again and my heart starts jumping all over the place in my chest and I’m soaking wet with sweat 😓

Reply
Kristen
1/26/2021 12:49:45 am

My brain zaps and night sweats first started in 2010 when I was heavily addicted to prescription medication. The zaps and sweats got worse when I’d try to wean off my pills. I ended up having to go to detox and rehab which was in 2012. Even after all this time, zaps and sweats haven’t completely gone away. I’ll go months on end waking up drenched in sweat. Then it’ll just stop for no rhyme or reason but always come back again. The brain zaps typically I occur first thing when I wake up in the morning. Sometimes the sensation is localized to my head and other times they surge into my chest and stomach areas. It’s a frightening sensation. I’ve met with numerous doctors and specialists about this amongst a long list of other mystery symptoms that greatly interfere with the quality of life. I always explain it like my brain and body acts like it thinks I’m still withdrawing from pills even after all these years. That’s the only thing I can compare it too. Sometimes I’m looked at like I’m crazy. Other times I’m met with a polite I don’t know what it is. In the end, no one has answers. I’ve been through what my primary doctor calls a million dollar workout. I’ve been tested for everything under the sun. I’m told my test results look great. That there’s nothing wrong with me. It’s just something I try to accept. Don’t know what else to do.

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Bob
2/25/2021 05:18:35 pm

I’m a Lyme survivor of 20+ years. Still being treated.
I had excellent results with brain zaps and sleeping using ATIVAN. I suspect other relaxers might good luck
Keep taking antibiotics

Reply
LC
6/3/2021 10:08:28 am

My kiddo has lyme/bart and has daytime seizures and brain shocks. Thank you for this post! We found chamomile (apigenin) is helpful to reduce these issues. We use the 6C homeopathic pill from Boiron. Just wanted to throw that out for people to trial. It's fairly cheap to see if it will work for you.

Reply
Rhonda Jamison
7/2/2021 10:15:02 pm

LC, Which Boiron 6C are you using? There are several listed. Thank you!!

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Rhonda Jamison
1/17/2022 04:57:27 pm

Which homeopathic pellets do you recommend of Boiron? There are MANY labeled 6c but they're all different. Thank you.

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LC
7/21/2023 03:02:10 pm

Sorry, I just looped back to this site recently. It is Boiron Chamomilla 6C. I did not realize that some people would not know chamomile and chamomilla were the same thing.

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Mitch
12/7/2021 11:35:52 am

Wow. Never thought I’d find a huge thread with so many people experiencing something like I am. Happens every so often where I experience these zaps/jolts in my head right as I’m about to fall asleep. Some nights I don’t sleep at all because of it. I can’t tell if it’s specific foods that do it or if it’s when I strain my neck the day prior. Seems like when I have these episodes I also lose appetite and can’t digest stuff. Vagus nerve issue perhaps? Am I pinching it off somehow? Not sure. I wish you all luck cuz I know what (some of) you are going through!

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Merritt
1/16/2022 12:26:10 pm

Thank you for sharing. I am going through the same thing and feel scared and alone, as I imagine everyone on this thread does. I just got a positive RMSF result and am waiting on other results (I suspect I have Lyme). I have also found Ativan very helpful; although, I don’t know how long I can stay on it or if I will find a doctor willing to prescribe it long term. These head episodes are so scary and debilitating. I can’t imagine living this way forever.

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Jim link
12/27/2022 01:20:13 pm

Christina - I found your blog entry while searching for the whole "brain zap" thing myself - my heart goes out to you. I know what it is like. I too am fighting these same symptoms. I just want to post a note of encouragement to you and tell you that Jesus loves you, he knows you and he wants you well. I am believing for your and my healing! God's Blessings to you! Jim

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Alex B
9/26/2023 08:08:50 pm

Thank you very much for this post. I feel like I’m being understood by reading it because I am experiencing the same symptoms you describe... It’s been a long time but I hope you are better since 2016.

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Alex B
9/27/2023 11:12:24 pm

I am currently experiencing these horrible symptoms that keep me from falling asleep... if someone comes across this thread and wants to chat with someone who understands what they are going through, you can email me: [email protected]

We will find solutions and continue to fight.

Reply
Jim link
10/5/2023 06:42:19 pm

Hi Alex - I read your post. I hope you are doing better and wondering if you have any success in countering these brain zaps? Is there anything in particular that helps? Thx! Jim

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