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Neurological herx feels like having a bad trip

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Posted 8/27/2018 6:57 AM (GMT 0)
For the past hour I’ve been laying here struggling to sleep through what is definitely the strangest sensation I have ever felt. I almost can’t describe it, but upon closing my eyes to go to sleep I suddenly felt a sense of vertigo as if I was moving, not just side to side but also upwards. I jolted my eyes open and my right arm and leg were both somehow numb yet hyper sensitive at the same time. This was accompanied by twitching and a burning sensation in my head and neck. I’m not sure if I passed out but it didn’t feel like I was comepletely conscious either, in fact it still doesn’t.

I’ve been dealing with mild herxing and some mast cell activation issues, but never anything like this. In the moment I was afraid that it could have been some sort of epileptic episode (as that kind of thing runs in my family) and I jumped up to take some CBD oil to calm the crazy neurological activity. I also took some alkaseltzer gold in case it was a herx.

Thinking back I barely remember any of it. Its all a haze and I still don’t feel like any of this is real. I feel like I’ve finally lost my mind! Could neurological/psychiatric symptoms like this actually be a herx? Or could this possibly be something closer to a seizure? Whatever it is, it scared the desire to sleep right out of me.
Posted 8/27/2018 2:01 PM (GMT 0)
I haven't had that exact symptom but I have had terrible neurological herxes. Often that is the worst symptom for me anyways but effective meds amplify them and can drive me to the brink if I'm not careful...

It's very possible that reaction happened because you are herxing.

How are you feeling this morning? if it doesn't let up you might want to talk to your doctor about taking a short break, exploring the possibility of taking a less aggressive protocol, pulsing meds, etc...

I hope you were able to get some sleep.
Posted 8/27/2018 2:44 PM (GMT 0)
I was finally able to get to sleep, though it feels as if I haven’t slept at all. The sensation is gone, replaced by a headache, but the surreal feeling I had after the episode remains.

Neurological symptoms have always been the most persistent symptoms for me, so I hope this is just a herx that will pass soon.
Posted 8/27/2018 2:47 PM (GMT 0)
I used to get the same thing, now and then for a long time. For me, it didn't seem to be a sign of anything in particular, but I would get it more often if I had a cold or something. I used to think it was an inner ear problem, but now I'm attributing it to babesia. It always did seem to happen to me when I was falling asleep.
Posted 8/27/2018 2:58 PM (GMT 0)

Notime4lyme said...
I used to get the same thing, now and then for a long time. For me, it didn't seem to be a sign of anything in particular, but I would get it more often if I had a cold or something. I used to think it was an inner ear problem, but now I'm attributing it to babesia. It always did seem to happen to me when I was falling asleep.

The exact same? Its such a surreal experience I didn’t think I’d find anyone who had experienced this sort of thing themselves. Did you have any remedies for it? When did it finally stop?
Posted 8/27/2018 3:31 PM (GMT 0)
I have not had anything that frightening, but I have read in Buhner's bartonella book that bartonella can cause epileptic and other seizures, including grand mal. Not sure about the Lyme and babesia. Lyme does cause neuro stuff and babesia is known to cause weird head sensations.

What are you doing for treatment? Which infections are you currently treating?
Posted 8/27/2018 3:32 PM (GMT 0)
I don't remember any twitching or burning of my muscles, but it does sound similar. I also can't remember if my muscles would get numb at the same time, but I would always be waking up and my arm would be asleep.

I started getting it 6 or 8 years before I got Lyme, I got Lyme 10 years ago, so it was a long time ago. It would usually happen in the early morning, if I woke up and started to fall back to sleep again. I would feel like I was moving around and around like I was going to pass out, and then of course I got scared and tried to wake up as fast as possible, but it would take a while to go away. Sometimes it would help if I turned my head or sat up, so that's why I thought it was something wrong with my ears at the time. But it would happen during the day too, and I would suddenly feel funny and feel like I was going to bump into things. Some days I just felt kind of woozy in general, but it was just a dizzy feeling in my head, and I usually felt fine otherwise so I kind of ignored it.

The whole thing went away for quite a while and I think it re-appeared after I got Lyme, I can't remember for sure. I know I had a couple episodes 4 or 5 years ago, when I was the most sick. I don't think I've had any since. I suppose that it could have been a ear issue, but the fact that it came with pretty severe anxiety (not about the dizzy feeling, just panic attacks in general), makes me suspicious. I have a family history of neurological problems, so I can't really tell what was what. But all the herbs I've been taking for everything seemed to help whatever it was, and I suspect that it was babesia.

I have heard of other people with similar problems, on the other healingwell forums, so maybe it's not that unusual.
Posted 8/27/2018 4:20 PM (GMT 0)
I get this quite a bit....I’m not on any specific regimen right now because of mast cell issues and being so sick from 10 months of antibiotics and antimalarials in 2016.... but I do get this type of sensation....my limbs will go numb, I will be super out of it almost drunk and high feeling and body sort of just a walking zombie or breathing zombie....my muscles will tighten up and then about two hours later or so it will turn in to a lasting migraine.....it’s horrible! I haven’t found anything that works and am supposed to see a neurologist for it on Friday but it’s a 6 hr trip so not sure I will be able to make it with the condition I’m in. We will see.
Posted 8/27/2018 4:22 PM (GMT 0)
Also I then always wonder if I had a mini stroke or something but I think ya just the post drone of the migraine afterwards....I’m honestly not sure. I always worry the whole or of it feeling could be brain damage but I think it is the brain coping with so much trauma and suffering. Or it’s the bugs and mold acting up.....
Posted 8/27/2018 6:12 PM (GMT 0)

WalkingbyFaith said...
I have not had anything that frightening, but I have read in Buhner's bartonella book that bartonella can cause epileptic and other seizures, including grand mal. Not sure about the Lyme and babesia. Lyme does cause neuro stuff and babesia is known to cause weird head sensations.

What are you doing for treatment? Which infections are you currently treating?

I’m currently being treated with 200mg of minocycline daily for lyme for the past week after a month of 100mg of minocycline daily. Then theres the 10ml of atovaquone daily for the past eight months for babesia, and I was also on bactrim for 4 months for bartonella. So any of those three infections could be the culprit, but it seems to correlate most with the increased minocycline dosage.

The possibilty of seizures is what worries me most. I’ve heard of herxing triggering seizures in those who are susceptible, and I have a maternal aunt and uncle who both developed epilepsy in adulthood.
Posted 8/27/2018 6:15 PM (GMT 0)

Leah2013 said...
I get this quite a bit....I’m not on any specific regimen right now because of mast cell issues and being so sick from 10 months of antibiotics and antimalarials in 2016.... but I do get this type of sensation....my limbs will go numb, I will be super out of it almost drunk and high feeling and body sort of just a walking zombie or breathing zombie....my muscles will tighten up and then about two hours later or so it will turn in to a lasting migraine.....it’s horrible! I haven’t found anything that works and am supposed to see a neurologist for it on Friday but it’s a 6 hr trip so not sure I will be able to make it with the condition I’m in. We will see.

I also have mast cell issues, it sounds like we are having some comparable experiences. Do let me know how that visit goes if you can make it.
Posted 8/27/2018 6:25 PM (GMT 0)

Notime4lyme said...
I don't remember any twitching or burning of my muscles, but it does sound similar. I also can't remember if my muscles would get numb at the same time, but I would always be waking up and my arm would be asleep.

I started getting it 6 or 8 years before I got Lyme, I got Lyme 10 years ago, so it was a long time ago. It would usually happen in the early morning, if I woke up and started to fall back to sleep again. I would feel like I was moving around and around like I was going to pass out, and then of course I got scared and tried to wake up as fast as possible, but it would take a while to go away. Sometimes it would help if I turned my head or sat up, so that's why I thought it was something wrong with my ears at the time. But it would happen during the day too, and I would suddenly feel funny and feel like I was going to bump into things. Some days I just felt kind of woozy in general, but it was just a dizzy feeling in my head, and I usually felt fine otherwise so I kind of ignored it.

The whole thing went away for quite a while and I think it re-appeared after I got Lyme, I can't remember for sure. I know I had a couple episodes 4 or 5 years ago, when I was the most sick. I don't think I've had any since. I suppose that it could have been a ear issue, but the fact that it came with pretty severe anxiety (not about the dizzy feeling, just panic attacks in general), makes me suspicious. I have a family history of neurological problems, so I can't really tell what was what. But all the herbs I've been taking for everything seemed to help whatever it was, and I suspect that it was babesia.

I have heard of other people with similar problems, on the other healingwell forums, so maybe it's not that unusual.

Its interesting because it started while I was on my back and the only way I was able to sleep was by turning onto my side, as any other position seemed to exaggerate it. I wonder if it could have something to do with inner ear vertigo as well, which was veig amplified by a herx or other neurological abnormality.
Posted 8/27/2018 8:50 PM (GMT 0)

SicklySkald said...
For the past hour I’ve been laying here struggling to sleep through what is definitely the strangest sensation I have ever felt. I almost can’t describe it, but upon closing my eyes to go to sleep I suddenly felt a sense of vertigo as if I was moving, not just side to side but also upwards. I jolted my eyes open and my right arm and leg were both somehow numb yet hyper sensitive at the same time. This was accompanied by twitching and a burning sensation in my head and neck. I’m not sure if I passed out but it didn’t feel like I was completely conscious either, in fact it still doesn’t.

I’ve been dealing with mild herxing and some mast cell activation issues, but never anything like this. In the moment I was afraid that it could have been some sort of epileptic episode (as that kind of thing runs in my family) and I jumped up to take some CBD oil to calm the crazy neurological activity. I also took some alkaseltzer gold in case it was a herx.

Thinking back I barely remember any of it. Its all a haze and I still don’t feel like any of this is real. I feel like I’ve finally lost my mind! Could neurological/psychiatric symptoms like this actually be a herx? Or could this possibly be something closer to a seizure? Whatever it is, it scared the desire to sleep right out of me.

Sounds like a neurological herx, from the minocycline possibly. I've had my share of neuro-symptoms as I feel I've got very embedded neuroborreliosis to contend with also. I know how frightening it is to feel things so bizarre like this, like one's grasp on reality has finally gone. The neuro-psychiatric manifestations of Lyme n Co are no joke and can be terrifying. It's like being the narrator of an Edgar Allan Poe (horror) story, or worse, if that even makes sense. Add to that sleep deprivation and this makes for some troubled if not traumatic psychological states.

My un-scientific educated guess is that the bug debris made from minocycline kill-offs disrupts some very weird and specific neurotransmitters. So you get: vertigo, depersonalization, altered reality, personality changes and as if that isn't bad enough, feelings and effects more bizarre than you ever imagined...

As only it and a few other meds pass the blood brain barrier and address the neuro-Lyme, I'm bracing for my next Mino + combo and looking forward to getting better, but I know it's a hell of a ride getting there for some people.

I hope your condition improves overall. But yeah I know it's hard to get any consolation or sleep while you are experiencing it.
Posted 8/27/2018 9:57 PM (GMT 0)

borrelioburgdorferii said...
Sounds like a neurological herx, from the minocycline possibly. I've had my share of neuro-symptoms as I feel I've got very embedded neuroborreliosis to contend with also. I know how frightening it is to feel things so bizarre like this, like one's grasp on reality has finally gone. The neuro-psychiatric manifestations of Lyme n Co are no joke and can be terrifying. It's like being the narrator of an Edgar Allan Poe (horror) story, or worse, if that even makes sense. Add to that sleep deprivation and this makes for some troubled if not traumatic psychological states.

My un-scientific educated guess is that the bug debris made from minocycline kill-offs disrupts some very weird and specific neurotransmitters. So you get: vertigo, depersonalization, altered reality, personality changes and as if that isn't bad enough, feelings and effects more bizarre than you ever imagined...

As only it and a few other meds pass the blood brain barrier and address the neuro-Lyme, I'm bracing for my next Mino + combo and looking forward to getting better, but I know it's a hell of a ride getting there for some people.

I hope your condition improves overall. But yeah I know it's hard to get any consolation or sleep while you are experiencing it.

I was fairly convinced it was due to herxing so I held off on taking my minocycline this morning tk give my system some time to clear itself out of any toxins, but even after no antibiotics and two detox methods the symptoms persist. I finally gave in to lying down and taking a brief nap, and experienced similar sensations to those I felt last night. I felt a little better after waking up, but this surreal feeling still persists and is beinging in a lot of anxiety. Its strange, it almost seems like its at its worst when lying down with my eyes closed, which makes me think it could be something amiss with my cervical spine or inner ear as was suggested earlier.

Thank you though, I hope the minocycline goes well for you too.
Posted 8/28/2018 12:44 AM (GMT 0)
Surprisingly, when I was on minocycline last year I didn't have it come back. And I'm not sure that it was a inner ear problem. When I wasn't feeling dizzy my balance was fine. I guess I would have had to ask an ENT or a neurologist to be sure.
Posted 8/28/2018 1:13 AM (GMT 0)
Sometimes it takes me up to a week to recover from a bad herx. It could be that you might need a bit of extra days off meds to get closer to your baseline. I can tell you minocycline dropped a sledgehammer on my head symptoms, it was brutal, like getting a concussion! and this is after I've been through significant amounts of treatment over the last couple years. But I am starting to tolerate it better after some weeks, but it's taken a bit of time.

Minocycline hits quite a few lyme patients super hard. It is very effective at crossing blood brain barrier, so I've been told. I also get a lot of anxiety when I'm herxing a lot...
Posted 8/28/2018 2:55 AM (GMT 0)
Having not taken either my morning or evening dose of minocycline today, I finally feel as if I’m starting to return to normal...or at least the way I’ve felt prior to treatment. I also did take fexofenadine for some mast cell symptoms starting up though, so its possible it could either have simply been a herx OR mast cell activity.

Tough to say since the timing of me starting to feel better correlates with both antihistamine intake and the 22 half-life of minocycline (its been about 24hrs since my last dose). I’ll start back up on the minocycline tomorrow and see how it goes.

I know that minocycline can be rough though and I hope that if thats the case for me I’ll adjust to it soon. I seemed to tolerate it really well when I was on 100mg a day, its only been in the last week following the doubling of the dosage that I’ve had anything noticeable occur. I hope any of you who are on it have luck as well, and those of you who have had success on it are keeping me hopeful. Thanks everyone.
Posted 8/28/2018 11:01 AM (GMT 0)
I am on full Buhner’s herb protocol 1st month
and last 48 hours for me was like falling in the hole
like Alice without understanding when its gonna stop.

I stopped taking pills altogether, took everything I could
for binding and still it was like a huge party inside
my brain, my body, I guess even my soul.

Eye pain, nerve pain, alloverbody pain,
muscle twitching here and there,
flashing lights, some fractals flowing around,
feeling like i m on carousel that cannot be stopped

Bruh, I guess it was my worst Herx

Plus my mother-in-law was staying with us last week.
So I was telling her what is Lyme and how I m curing myself.

And she was telling me same old “But you don’t look bad”
She was trying to convince me that I’ve created
this illness🙄🤧

So she didn’t believe me even now, when I was
hardly walking( or walking like drunk person) wearing
sunglasses at home at night because everything
is just too bright.

She left without telling me Goodbye or anything.

I guess next her move will be to tell my husband
to divorce me
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