I hate to put this out there as I think to the degree i am experiencing it is rare. I don't like to know what might happen to me until it happens as it's easier for me to deal with what's going on in the here and now. I don't wnat to scare anyone.
Please don't worry about it happening if it's not. my doc said it's rare, but she did not really explain it to me very well. I found some interesting info posted here that I will put in this post..
Curious to know if anyone else deals with this.. ANd anything you all can tell me concerning it and how to calm it down. I would like to know anything I can to understand better.
I started jerking about a year ago which was wierd and not fun. But then, December 31st(last month), I had a really bad episode where I was jerking worse than i ever have.
My entire body was jerking at the same time and it literally felt like i was about to go into a seizure. I felt like i was on the verge of being unconcious and in the floor. By that point I couldn't fight it any longer.
On top of that I was yelling and screaming without any control of my vocal cords or jaw. Loud screaming and noises were just coming out on their own. I also felt like i was going to throw up.
Chewing ice and ginger did help and I think that kept me from the seizure. I've never had a seizure but it was intuition after it happened that that's where i was going. Then I read the following tonight and it was confirmed.
I found this in a post here concerning myoclonus, which is normally uncontrollable jerking.. I guess the following is the worst form.
Progressive myoclonus epilepsy (PME): - is a group of diseases characterized by myoclonus, epileptic seizures, and other serious symptoms such as trouble walking or speaking. These rare disorders often get worse over time and sometimes are fatal.
Studies have identified at least three forms of PME. Lafora body disease is inherited as an autosomal recessive disorder, meaning that the disease occurs only when a child inherits two copies of a defective gene, one from each parent.
Lafora body disease is characterized by myoclonus, epileptic seizures, and dementia (progressive loss of memory and other intellectual functions).
Many of these PME diseases begin in childhood or adolescence. Reticular reflex myoclonus is thought to be a type of generalized epilepsy that originates in the brainstem, the part of the brain that connects to the spinal cord and controls vital functions such as breathing and heartbeat.
Posts: 59 | From U.S. | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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I'm up late because my neighbor's snoring is breaking through my ear plugs - but I hope to nod back off to sleep soon.
Yes, I've had the vocalizations with myoclonic seizures.
I can't really say it's screaming as the voice is almost reversed. It's loud but its like I'm breathing it in - or trying to - sounding more like a pig grunting very loud and breathy - gagging for breath but the volume seems to be coming from somewhere.
It's usually just after the "pass out part" and I'm aware but unable to control my body. For me, it passes within a minute and it's another minute before I can speak at all.
It happens when I'm on the phone and a certain syllable or push tone cuts through my ear - or from a flash camera -
I've not had one in a few months as I tried to stay off the phone and I do not go out anymore. Andrographis is also really helping. Gotu Kola has helped in the past, too.
I'll come back tomorrow and see if I can offer any other help - oh - magnesium . . .
While ginger can help with the inner ear part, for me, it is too stimulating.
if you search "articles" for seizures, they have a very good article on what can help.
This can get better. I've read that for those who deal with this (as relating to lyme) with successful treatment, this can disappear.
I hope you have a LLMD because I simply do not believe this is progressive. I think the doctors who believe in PME have decided to stop learning.
Give anyone toxins (such as from lyme or heavy metals) and seizures can happen. Stressed livers, fried adrenals - either one can do the same thing. Irritated nerve endings (from lyme) and it's a potential --- loss of words.
Magnesium defi-- low magnesium can cause this, too.
This is not all that rare with neuro lyme and it can get better.
posted
Oh, wow. Thanks for all of that. I will probably print this out and take it to my doctor. And check out the article on seizures..
Posts: 59 | From U.S. | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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Hmm . . . you mentioned that you had a really bad episode on December 31st.
Be sure to trace all the food you ate for a week prior to see if any connection. I assume, since you've been at this for a while that you don't drink. But, if the holidays had you in a bubble and some slipped in, that could certainly be a trigger.
--
As for sharing what I wrote above with your doctor, it is very wordy and it's best to just say you've read a post from someone with similar symptoms.
Believe me, no doctor will want to wade through what I wrote. I am terrible at editing my stuff and want to be sure I cover all the bases.
There are articles about lyme and seizures - articles by doctors will mean much more. Mine is what is called anecdotal. It will count for very little in the eyes of most doctors and, truly, one could not say that we have the same underlying reasons.
Even with a lyme patient, there can be other things going on.
But you should not have to research this.
If you have lyme and if you have this kind of seizure, you should be seen by a LLMD who will know all this and know how to sort it out or if you should be referred to a neurologist who, hopefully, would be one also who is lyme literate and has seen many other lyme patients but who will also not get stuck with that dx.
Is your doctor a LLMD? I tried to determine that from a glance at your past posts but can't tell. You've been hear since '07 so I assume you have all the information about lyme and have read a bunch.
If the doctor is not familiar with lyme it could well be a waste of time. I've had seizures during many tests, in many doctors offices (so many startles there) and unless the doctor had experience with lyme, I was simply dismissed.
Aside from hoping you have an experienced and educated doctor . . .
A couple things I saw in your history concern me if you are having seizures. 1. Daily sauna - if you get too hot that can trigger seizures - is the sauna LOW HEAT, infrared? If not, be very careful to not get too hot or stay too long.
You also mentioned your heart has stopped a couple times in the past. A hot sauna can be especially bad in such a case and you might want to have your QT measured. It's a heart thing having to do with rhythm. If a startle stops a heart, it can be a QT thing and that often can trigger what can look like a seizure.
You said in a previous thread: '" . . .yerba matte is a tea that has been giving me noticable energy. . . "
As I recall, that can be somewhat stimulating. Anything that is a boost to energy might be too much for someone with a seizure disorder. Gentle support is best.
Ashwagandha, Siberian Ginseng (not regular ginseng) or other adrenal support is better than anything that feels like it revs you.
--
Have you been on any anti-seizure meds? They work for some people (I just have not found any - but I also have a liver processing condition). You may do fine and it could give your brain a rest.
Again, it's hard to tell how long you've had these seizures, if you've been treated or lyme or not - but I hope you have a doctor who will be able to sift this all out.
and, oh . . . since you've been here a while I assume you avoid aspartame/Nutrasweet/Equal and all forms of MSG (you have to google for that).
Have you tried a gluten-free diet? That helps reduce seizures for me (but I do have celiac, too). Still, for many lyme and seizure patients, gluten can be a trigger.
Oh, getting good sleep is also vital.
And - being sure that your blood glucose levels are stable. Not too high or too low. Be sure to eat moderate amounts of complex carbs to carry you through. Protein at each meal - and good fats - nuts, etc.
Healthful snacks are a good idea in the middle of the day.
Good luck. Take care, now.
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[ 01-28-2009, 11:17 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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I hope when you were dx with lyme that you were also assessed for coinfections - relating to ticks and beyond.
Here's an excellent list of what else to consider - these can also contribute to seizures, as can many infections.
You should also be sure to stay clear of moldy environments. And, if you have gas heat or a stove, be sure to air your home out each day for a few minutes.
If you have a gas stove, be sure to use the exhaust fan on high BEFORE you turn on the burner - and again right before you turn it off.
Going scent-free and using only plant-based cleaning products may also be a huge help.
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[ 01-28-2009, 12:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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Although, currently doing okay with another plan, I have used Gota Kola in the past and found it extremely helpful. I also found Olive Leaf Extract to be a big help, along with that.
This does not replace treatment for underlying infections that may be the root of seizures, still, it can be a support measure.
Here are my file notes about that:
-------------
Gotu Kola has anti-convulsant properties.
It also can help eliminate poisons from the bloodstream.
It can calm the nervous system while also helping with alertness. It helps give a sense of well-being without feeling ``wired'' or ``hungover''.
Of everything I've used over the years, I cannot say enough good about the wonderful effects I've seen - in many ways - from Gotu Kola.
I deal with seizures but cannot tolerate any seizure drugs (even in tiny amounts) as they are far to sedating (my legs even give out on me) and even depressive to my brain and mood. Gotu Kola helps tremendously. It clearly calms the startle reaction, too.
GOTU KOLA -- An Under-Appreciated Herb: Multifaceted Benefits on Microcirculation for Cardiovascular and Cognitive Health -- By Linda Fugate, PhD
The best nutrition in the world will not do anyone any good if it doesn't reach our tissues. The gatekeeper to tissues is the microcirculatory system, which includes blood vessels smaller than 0.1 mm in diameter. The health of the microcirculatory system is now recognized as critical to the total health of the individual. (1)
Gotu Kola's Effect on the Circulatory System . . .
From Wound Healing to Brain Health . . .
. . .
Conclusion
. . .
Gotu Kola's primary action is enhancement of the health of the circulatory system. Because circulation is critical to the health of the entire body, Gotu Kola offers benefits in a variety of conditions.
The antioxidant and collagen supportive functions of Gotu Kola are particularly important in enhancing healing of damaged tissues.
Gotu Kola is bitter and astringent in taste and cooling in action. It is a brain and memory tonic, and an anti-poison, and very useful for wound and skin healing.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Minnie Mouse. I've experienced the same symptoms you describe.
I finally discovered that bartonella treatment got to the root of my problem - Levaquin, but for me, only at low dose (1 pill 4 times a week).
I also take magnesium supplements but this doesn't help as much as being treated for bartonella.
I also take valium, 5-10 mg during an episode.
These three treatments have, for the most part, stopped my screaming myoclonic episodes.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Jill E.
Frequent Contributor (1K+ posts)
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posted
I was just about to ask if anyone had this.
I've been on antibiotics for five years, the last two developed myoclonus about the time I developed Bart symptoms. I've been on Bart treatment for two years but still test positive.
Recently I've been having noctural grunting, grumbling and inhalations of air - very myoclonic like yet vocal, either alone or with body movements.
This is scaring me terribly, I'm seeing all my Lyme docs about it, one suggested having my brain waves checked during a sleep study.
I'm having my neurotransmitters re-tested. A couple were slightly low a couple of years ago but maybe they are even lower and contributing to this.
I'm glad to read about the Gotu Kola and other options. I also need to get back on Bart treatment but I think I need to try herbal.
I've been on low-dose seizure meds for two years but this symptom is within the last year and getting worse.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Keebler
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posted
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Jill,
herbal support can help, just be clear in the difference between what is support and what is to help fight lyme/TBD infection.
Liver support is also vital.
Good luck.
-==
In addition to toxic infections, stressed liver and depleted adrenal function, another possible reason why some patients do poorly on some of the seizure meds may be porphyria.
With the exception of Neurontin, most anti-seizure meds can create excess porphyrins and that can create a very toxic situation - and make seizures even worse.
Although Neurotin is not a C P-450 med, I still have had major problems being able to tolerate even a tiny dose. Some people do better than others on this.
Here's a thread with more detail about excess porphyrins:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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In addition to Singleton's book which offers great suggestions for support, for those having trouble tolerating antibiotics, these books may be of additional help:
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Thanks, Keebler,
I can't tolerate Neurontin. I've suspected porphyria for years - got tested for it a long time ago but not by a doctor who understands tick-borne diseases, antibiotics, etc. I've read a lot on the cpnhelp website about it.
I couldn't tolerate even a tiny bit of Japanese Knotwood but plan to try the Buhner herbs one by one at tiny doses to start. I ahve the Zhang, Buhner and Singleton books - all very good. One of my docs wants me to try the HH herb because of Bartonella.
Thanks, you're always a wealth of info.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Dawnee
Unregistered
posted
I stopped posting here awhile back but still come to read sometimes. I wanted to let you know that I also have myoclonus jerking and while I don't actually scream, when it happens I involuntarily make a weird throaty noise that is very audible. This only started recently.. within the last year (age 30) My tests for Bart came back neg. but my LLMD suspects it anyways based on symptoms.
Just wanted you to know you aren't entirely alone. I know the FEELING you have, that "on the verge of a seizure" feeling (in fact, I believe what you experienced IS a seizure..there are many types)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Dawnee,
very good point with what you describe:
" . . . that "on the verge of a seizure" feeling (in fact, I believe what you experienced IS a seizure..there are many types) . . .'
--
Thanks for sharing that - I never knew ANYONE else experienced that icky ride.
I frequently have had that that "on the verge of a seizure" feeling - and have learned that if that is present I must be extra careful to avoid startles.
It clearly is a warning sign for me and I don't even try to think of going out if that feeling has been around at all that day.
Some may call that an "aura" but most doctors who think about auras want "foggy mist" sort of descriptions.
By your saying it can be a seizure of a sort itself lights a bulb. The brain activity is raised in the excitatory category ---
Magnesium helps calm this down for me but it can take some time. Cat's claw tincture works immediately.
And, for women over 35 - pre-menopausal hormones can be playing a role.
That icky feeling sure can stick around for a while. I've tried to describe that to doctors but I think they think I'm a bit odd or in panic mode - but I'm a calm as a cucumber - just with an irritated brain or out of balance hormones. It's truly a balancing act.
Sorry it's taken me so lonmg to reply again. It's just hard for me to spend much time online very often...
There is some interesting info in here.
I have to say i'm amazed that the one poster(Keebler?) has amazed me with reading up on my situation.. How do you find the energy and mental clarity to do that, wow! Thanks...
I want to send you a pm, but am not exactly sure how.
I had a sneaky suspicion when i thought about it that perhaps what i experienced was a seizure, so it's interesting that you say that.
honestly, it's so hard for me to take in everything that is posted here. I don't know how you guys do it. seriously.
it's very overwhelming so much info and feeling you can't absorb or understand it all.
leaves me feeling that i can't hit all the bases so i'm neglecting things which allow me to have a well balanced understanding and treatment plan..
I hope i'm the only one that feels this way, but probably not...
i'm curious about the gotu kola... and increasing my magnesium. the frustrating thing is i just bought two huge bottles and can't find them! they are hiding in my bedroom somewhere and it's not like there are many good hiding places, lol.
ok, sorry if i'm being overly silly. I've had to find my sense of humor through this and rely upon it heavily..
I even find ways to laugh at the uncontrollable words coming out of my mouth.
Posts: 59 | From U.S. | Registered: Oct 2007
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posted
Haven't read all the responses yet, but do want to add that hubby used to make grunting noises when he had his worst jerking spells. We thought it was because the jerking was causing muscle spasms which affected his diaphragm.
He has had some really severe shaking/jerking spells and even jerked so bad he fell out of bed once in the hospital.
I wouldn't worry about having some inherited genetic disease. The most likely cause is Lyme or some other tickborne infection which is in your brain and central nervous system.
I think this could be caused by Lyme, or babesia or bartonella or the mystery bug. You need to be on an antibiotic that penetrates the blood brain barrier. Oral or IV Ativan can help control this symptom but you still need to treat the infection. Low dose Lyrica does help hubby -- none of the other 5 or 6 seizure meds he tried helped. Too much Lyrica makes things worse though -- causes his muscles to lock up.
If your vagus nerve is irritated that can aggravate these spells. One new therapy for epilepsy is a vagal nerve stimulator -- but I have read that in about half of the patients it makes their seizures worse instead of better.
Hubby almost always has nausea and dry heaves and sometimes even actually throws up when he has his really bad jerking spells.
Two different times low dose clindamycin and quinine stopped these spells for hubby for several months. Not sure if that was working on babesia or the clindamycin may have had some effect on the mystery bug.
Then more recently levaquin stopped these spells for several months. What seems to be working now is a combination of minocycline and zithromax with the herb cryptolepsis and the supplement lactoferrin.
Also, another possibility to try is Benicar -- this is a blood pressure med which acts as a vasodilator. If your brain is not getting enough oxygen it can cause these type of uncontrollable jerking movements. Insurance wanted hubby to take Attacand which is another vasodilator -- did not work as well as the Benicar and we ended up in the ER.
IV magnesium probably will not do much for severe myoclonus.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
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