Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I do a lot of shaking and twitching and trembling. Sometimes it seems like I'm vibrating, sometimes it seems like it's just my neck that's vibrating, sometimes I'll get a twitch in my right eyelid...etc.
I get the tippy boat rocking feeling and it will feel like my head is moving just slightly; almost like the mildest dystonia in the world.
But *sometimes* -- when I fall asleep, especially during the day I'll wake up and my WHOLE BODY will be twitching all over, like crazy, shaking.
It used to feel like the small muscles on the back of my neck were having a complete freakout, they would just contract and let go really fast without connection to each other and I could feel it all the way to the top of my head, especially when I was lying down. Is that a "focal seizure"?
So of course I keep trying to look this up on the internet and I've run through all the general keywords that say it's Lyme. But that particular symptom, waking up shaking -- is that a seizure?
I'll also feel like I have these tiny bubbles fizzing in my legs and that can go on a while.
If they are I haven't really seen anything on Youtube that looks like a "Lyme seizure." These aren't that violent and have actually calmed down a lot. But is this what's happening?
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I have been having violent twitching as you have when sleeping also.. llmd said its nerves...i read good theorys on twitching a)magnisium deficiency b) mylein sheath erosion c)medulla in brain is infected causing uncontrollable motor function...
i wonder what marnie might say?..or keebler? The latter sounds kinda like a seizure, ...thinking chinese cats claw, baclofan or my llmd threatwned benzos ..i think valium...when i had the phentanyl /verced i got bad itching but vibrating when away for a week
dr phil model had some bad also christie on justinandcristie hads some bad she would pass out ...hard to watch hard to live with..scared the bagezzers out of my fam
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I know. I can't watch some of those videos.
I guess it's good to hear "nerves" and not "seizure."
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Unless the doctor is just dismissing you and uses the term "nerves" to say "it's all in your head" as so many doctors have done to so many patients with chronic conditions that are complex or not well understood . . . .
what is being described as "nerves" can certainly be a calmer way of saying seizures, actually. But before letting that "oh, ****" take hold, know that seizures can have a very, very wide spectrum.
The nerves are overactive, wired . . . the NMDA nerve receptor are on overdrive (and magnesium can bring that down) . . . .
anything that causes nerves to seize, contract, spasm can be on the spectrum. But that does not mean epilepsy or that it's going down a rabbit hole.
Although epilepsy can cause / trigger seizures, not all seizures are caused by epilepsy. Not at all. Of many with lyme / TBD who reported various "degrees" of activity on the seizure spectrum, with good, assertive comprehensive treatment, this matter usually resolves.
However, at this point, it is a sign to be very careful, indeed. You certainly do not want to push an "kiddling" (see next post).
Whatever you call it, you might come up with a term that works for you, that is kind. Basically, nerves are just firing too rapidly.
Nerve spasms / contractions / seizing can certainly be reactions to a condition such as magnesium deficiency, toxicity and while the brain can certain be involved the action / event may not be due to a brain issue but a physiological issue can push buttons in the brain, so to speak.
Anyone in their lifetime can have a seizure, or a period of time where there is activity on the spectrum. Again, it may be a result of epilepsy but, often with lyme, it's a different sort of cause.
It's not so scary once it's better understood. Most often: MAGNESIUM & LIVER SUPPORT help.
Education is always good. Light the darkness so you can see the way.
Avoid all fluorescent lights and "naked" uncovered light bulbs.
Also be sure to avoid ALL stimulants (even coffee) and any drugs that lower magnesium or mess with QT heart rhythm. Espeically where there is a startle reaction, some seizing can be QT related. Detail next post.
Check all Rx, OTC for side-effects and be sure that any supplements taken are of the very best quality and, where possible, guided by a LL naturopathic doctor or herbalist, acupuncturist - or after reading from such if that's the only way to gain knowledge.
If at all possible, along with magnesium and good liver support a MASSAGE can do wonders to calm down over active nerve activity. -
[ 03-22-2016, 03:46 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Best way to control limbic seizures / overactivity?
Actually, for anyone with hyper-stimulation of the nervous system. It's all in the same neighborhood.
Many LINKS - hope something here will (gently) ring some bells for you. Lots to consider so just take it one step at a time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
The inner / middle ear (vestibular system) is likely also very involved. And that is very common with lyme / TBD.
Some Rx also have this as a side-effect. But, if when you move your head it changes drastically, there is a very specific kind of vertigo that has a therapy that may help. the EPLEY MANUEVER for Benign Positional (one other word) vertigo.
That maneuver will not work with other kinds of vertigo, though. Detail below.
OTOTOXIC drugs are often to blame for other kinds of vertigo / dizziness and not having the right kind of liver support (thought that's not guarantee all the time)
mal de debarquement can also be in the mix with lyme / TBD
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
Ototoxic drugs discussed. And what HELPS all this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks Keebler.
I did have an operation for a cholesteatoma before I knew about Lyme. And I am taking minocycline, so I now have tinnitus I'm noticing more and more. I think I started noticing it a while ago but I thought it was from the operation and didn't let it bother me.
The overactive nerves/shaking etc started before mino though.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Jordana, I have a lot of similar things occurring... Esp. when falling asleep or laying down relaxing... quick limb jerking... muscles twitching in legs...facial twitching...
the scariest part is that I feel so strange and weird in the head when this occurs, and also have odd "spasm" type feelings.
I was sure, I was having some kind of seizures, but an EEG came back clear.
Right now I am trying Magnesium, hoping this will help... but I wonder how closely this ties in with adrenal/thyroid problems.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
yes can totally relate on jerking/twitching; seems to occur most frequently as I fall asleep or lying flat relaxing
Posts: 69 | From Ireland | Registered: Apr 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Progressive relaxation, isometric exercises can help. GENTLE stretching / shaking (do the Hokey Pokey). That tensing and releasing of muscles and good slow deep breathing. Nice soft music can help to get breathing at a nice pace.
Tense up muscles and let them release under your control / command and then there may be less of it later. The diaphragmatic breathing helps with adrenal / stress hormones, too.
All this AFTER being sure magnesium is on board (1,000 - 2,000 total mg per day but in divided doses 3-4x day)
and that you don't have any stimulants in your life, at any time of the day.
Assess adrenal supports, too, as some can be too stimulating. Rhodiola, for instance. Some kinds of ginseng. These are best in small amounts, in combination with other adrenal supportive herbs that are more nutritional in nature (such as cordyceps, Eleuthero, Ashwaghanda - 3 - 4 x a day, divided doses).
HERB PHARM SCULLCAP tincture (non alcohol) can be very soothing, indeed. They may spell that with a "k" / skullcap. This kind MUST be in tincture. The powder will not work. This is not at all the kind of skullcap that Buhner talks about. A different strain.
RESTORAVE YOGA, Tai Chi or Qigong - or even your own dreamy interpretative dance moves - may be of help as well to soothe out that highway of nerve fibers in the extremities. And such intentionally meditative vibes will help the brain dial it down to dreamland.
Turning off lights much earlier in your night because light wires the brain for stimulation long after closing your eyes. Even getting a red night light can help. -
[ 03-22-2016, 03:07 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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posted
I was thinking about going to get an EEG or a sleep study. But I've read most people who do that hear that any of those issues are "psychogenic."
I don't know if i would want to be on any extra drugs for this anyway, which is what i'd be offered.
It seems like anything that "calms the nervous system"just makes you less able to cope with the world and more depressed.
Thanks for all your suggestions, Keebler Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
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posted
- Not sure why you think this: "It seems like anything that "calms the nervous system"just makes you less able to cope with the world and more depressed."
Unless you limit yourself to only Rx.
The suggestions in the seizure thread to help calm the NMDA neuro receptor are not Rx. There are many ways to calm the over activity that are very much balancing in nature.
An EEG is not likely to be warranted for the symptoms you describe. Our bodies talk to us and we can listen. We don't always need fancy machines that so often really can't offer all the detail we are lead to believe they can.
An EEG can miss a lot of brain seizures, even.
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
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Member # 33581
posted
The vibrating and the tippy feeling sounds like Lyme and co. I've had both.
As for waking up shaking, that is harder to tell. Are you able to stop the shaking of your own volition? If you can, that doesn't sound like a seizure.
Really the only way to tell if it is a seizure is to do an EEG AND catch the activity on the EEG.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Oh no, i cant stop it. it doesn't seem to have to do with the voluntary muscles though and when i get up and move around a little it goes away.
I guess if i can get up and move and it stops, then there is a way to stop it...
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
That's interesting, because getting up and moving around makes some pretty weird things stop for me too!! including "spazzy, seizurish feelings...
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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