posted
I am thinking what I had was a myclonic jerk, hopefully not a myoclonic seizure, unless they are the same thing.
Anyway, I was dining out and all of a sudden my whole body jerked once, I felt like I was going to fall out of my chair, held on to the table, and that was it in 2-3 seconds. I have had this maybe once before.
Before dx and tx I had the electrical shocks, but this was not that.
I am curious why now, 15 months into treatment, this is happening? Is it part of the brain healing process or is my CNS lyme finding a new activity?
Posts: 478 | From Third Coast | Registered: Feb 2011
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randibear
Honored Contributor (10K+ posts)
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posted
I have these at night when I'm laying down. Don't know if it's the same thing or not. My whole body jerks violently and afterwards I'm kind of sore.
Would like to know more also
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I've had the entire spectrum of myoclonic - and tonic, too.
MAGNESIUM & FISH OIL are my best friends with that.
LIVER SUPPORT, too.
You probably are clear of additives but, just be sure - because these can CAUSE MYOCLONUS:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Rereading your post:
You said you were dining out. THAT can explain a lot.
MSG, other excitotoxin or GLUTEN?
My first guess is MSG or other additives.
GLUTEN can trigger myoclonic jerks (and seizures) for me. Even up to 3 days later. But I'm a genetic celiac.
You can call the restaurant during a non busy time and ask them to go over ingredients with you regarding 2 or 3 things. More than that might be just too much for them to manage.
First, though, see if they have a website where you can sort out what you ate / drank.
SENSORY OVERLOAD?
Also, there is just so much sensory stimuli in a restaurant (sounds, lights, cameras, action) that you circuits may have been overwhelmed.
Now:
REST. Be very careful about exposures to all stimuli for the next week to 10 days.
If you are planning on being around fireworks for the Fourth of July - I tenderly suggest rethinking that and plan quieter times with friends.
DRIVING?
You should probably not drive for a couple of weeks, at least.
I hate to say this but, yes, that could well have been a seizure. And, once that "kindling" starts, it can escalate with lesser triggers.
Call your LLMD and let them know.
Now, this could be just a one time thing and, actually, when you talk with the restaurant MANAGER, you should use the term "short seizure" and that you just need to be sure if it might have been something you are allergic in the food.
ASK if you should call back later or if you can email him your menu items and he can take a little time to help you sort this out.
BENEFIT of that -- IF this from a food ingredient, you will have much easier time prevent this from going anywhere.
Sorry this is as it is. Hope you feel better soon. Hope you find something to laugh about today.
Remember: MAGNESIUM, up to 2,000 mg a day in divided doses 3 x day. Never all at once. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Yes
Bartonella, toxicity, CNS
My Doc has me on Trileptal for it and it works great. I also use ativan to sleep.
For me as I was fallign asleep I would jerk real bad. Dr J talks about this a lot and calls it something. Nevertheless the hippo-campus is involved and toxicity ad most likely Bart/Borrelia.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- Lithium Orotate is also something to consider.
AVOID GLUTAMINE, L-Glutamine and Glutamic acid added to any supplements. It's very exciting to the nerves. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, it is interesting what you say about sensory overload.
I distinctly remember a woman walking by my table in a geometric pattern dress that seemed to, as crazy as this sounds, mess with my head. The event happened right after that...hmmmm.
Also, today I was getting my hair done and there was a stylist next to my stylist who talked incessantly. There was something about her voice and volume that was driving me crazy. This isn't usually an issue for me.
It has happened at least one other time, although I didn't pay much attention to the event. I can't even remember when or where, just remember a jerk and the feeling of loss of balance.
Posts: 478 | From Third Coast | Registered: Feb 2011
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Keebler
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posted
- Stripes and zig-zags have sent me to the floor.
Cologne, too. So the hair salon hold lots of potential "hits"
The sound sensitivity - if constant - is called hyperacusis.
You are getting lots of warning signs to avoid certain environments for the time being.
The inner ear effects can be common with lyme and other TBD, too. And with liver toxicity.
Again, your LLMD should be made aware of these things. Your diet, your home (scents, cleaning products) all need to be considered to lighten the load. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
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posted
my llmd told me to take glut along with l carnitine and other stuff...
Geez
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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Member # 12673
posted
- Glutamine supplements can trigger seizures in sensitive people. -
Caution: Aspartate; Glutamine; and Phenylalanine
Each of these can cause far too much nervous system and adrenal system stimulation for many who deal with lyme.
This information is especially for those with any degree of:
it is best to avoid these three particular amino acids (other than in normal doses from food or maybe in a balanced formula with other amino acids & other nutrients, but not above the average daily dose.
Even at that, some people need to avoid excess foods that contain one or both of those as they can be too stimulating for the brain when it's already overstimulated from neuro-toxicity issues.
Specific Detail here, especially about Glutamate / Glutamine (which some do okay with but others may really react badly):
MSG can hide under many names. A web search can help uncover those.
Same with aspartame and splenda. Both are flying under the radar in a lot of products - just under the clock of a different names. "Natural Flavors" can be MSG. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Koo, If the patterned dress felt like "it messed with" your head, and the woman's voice was so irritating, I think there is something going on here.
How much magnesium are you taking? You may need to increase your daily dose, or switch to a different kind.
Are you taking fish oil? The omega 3's in fish oil will improve cell wall integrity, reduce inflammation, and "thin" the blood, resulting in better blood circulation to the brain.
These may help to reduce the "kindling" that Keebler spoke of. That's when a seizure incident sensitizes the system, making another seizure more likely.
Dilantin, or Phenytoin, used to be prescribed for seizures. From what I understand, the drug companies don't make much money on it any more, but it can still be quite useful.
A Remarkable Medicine Has Been Overlooked by Jack Dreyfuss
Quote from a review: Dilantin is an electrical membrane stabilizer. It stops excessive firing of neurons, via sodium and calcium channel blocking, which is why it is effective in epilepsy.
I know most people will not read the book, but at least read the reviews, which will give you an idea of what's going on.
Small doses of this medication can reduce irritablility, attention deficit, depression, migraines, pain....and myoclonis. Jacob Teitelbaum M.D. mentioned it in one of his books as being helpful for pain and fatigue.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
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posted
- koo,
In addition to great replies from others . . .
you posted a while back about vertigo after an elevator ride - and, I think you said that had happened a few times.
See the VESTIBULAR THREAD below - first the posts about NYSTAGMUS - it's common with lyme and MAGNESIUM helps.
The inability to manage strong geometric patterns can be due to the inner ear involvement that you have.
Regardless, as there are many things going on here at once:
posted
I take between 500-1,000 mg. of magnesium/day, usually 500. I do take fish oil.
I wouldn't be surprised if I had inner ear involvement. I have had ear discomfort since 2007, well before a dx in 2011. Nothing has ever been noted abnormal with the ears. I had an increase in ear discomfort last week. This waxes and wanes.
Honestly, so many of the CNS symptoms have vastly improved or gone away in the last 15 months so I am somewhat taken aback by new symptoms. <insert heavy sigh>
I will have to pay close attention if this happens again and try to note what I was doing that day or at that time.
This time I was visiting my 7 month old grandson. I was very busy and holding him a lot, and unfortunately noted muscle burning in my arms from holding the baby. Picking him up and putting him down and carrying his diaper bag was really taking a toll on me.
My heart pours out to all of you with lyme who have infants you want to love and hold and nurture, and children you want to spend time with and be actively involved in their lives. Yes, I'm 50 and it is difficult, but I imagine it probably feels the same for you younger mothers.
I was so disappointed when I came to the realization that it would be difficult to take care of the baby alone if I had to. I can only imagine a mother's frustration.
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