lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Anyone else experience "locked-in" syndrome? Once in awhile I'll be talking or just doing my thing and I'll suddenly freeze like a statue.
This happened to me again last night. I was sitting in my easy chair in the living room and my little boy asked me a question. I turned to answer him and my left arm shot up in the air and my whole body suddenly froze.
My other son called my husband to help me and he lowered my arm and straightened my head. Then, my eyes rolled back in my head and my eyelids closed and I couldn't open my eyes!
My jaws locked tight, too, so I couldn't open my mouth. It was very unsettling.
So all I could do was sit there and wait for my body to "unlock". It took an hour and a half!
Afterwards I had a terrible headache, malaise, and felt very weak. I ended up sleeping in the easy chair.
I'm up now - but still weak and woozy.
What infection causes this? Borrelia itself or one of the co-infections? Currently I'm only treating bartonella.
Guess I'll lie in my bed today.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
That is scary!
It kind of reminds me of a seizure....
Have you called your LLMD and told him/her about this?
I would.
Hope you feel better soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I hope Bea Seibert comes along to answer this question. Her Lymie husband has many problems with this type of symptom. I think he was recently diagnosed with "frozen man syndrome"...because the ducks refused to acknowledge his tick borne illnesses.
My teen daughter developed a seizure-like movement disorder when first infected in Spring 2006. Her LLMD says she has Lyme & Bartonella. He strongly suspects a bartonella like organism is responsible for the seizures.
LLMD believes this is due to sub-cortical seizure activity...so you won't see anything abnormal on an EEG. My daughter's MRI and SPECT scans were normal too. Sometimes damage doesn't show up for at least 6 months.
The pediatric neurologist had no diagnostic curiosity and didn't think Lyme was possible here, so blew off my daughter's problems and history. MD listened attentively, but that was it.
We do have some family history of a movement disorder, but my daughter's seizures are much more involved and much more frequent.
These things start in her hips...feel tingly & kind of freeze up. Walking becomes wobbly back & forth like her hips were in a cast, then her arms do strange things...one pulls up, one sticks out, hands in weird positions too.
Then it goes up her neck, pulling it sharp to the right, her tongue pulls to the right so she can't talk. She's aware when it's happening and tried to talk, but you can't understand her speech.
These don't last long...some are as short as 10 seconds, others 30 seconds. They vary in intensity. She looks like she's mocking someone with cerebral palsy.
Anti-seizure medicine such as tegretol controls the seizures.
A movement disorder is a sudden unexplained seizure-like activity in response to movement. These things only happen after she's been sitting...then gets up and starts to walk, run, or go up the stairs. They don't bother her. Sometimes she complains her head hurts afterwards.
Some physicians think this is a seizure, some think it's a movement disorder. True seizures cause a patient to lose awareness of their surroundings. A movement disorder is not a true seizure, since the patient maintains awareness.
The diagnosis from the ER neurologist was paroxysmal (sudden) kinesogenic (movement induced)choreoathetosis (strange movement).
This ER was in an endemic county, but where they don't even realize Lyme disease is present. Dumb duck didn't even know Bell's palsy was a Lyme symptoms.
The pediatric neurologist was also in an endemic county, but didn't know it.
CAN'T THESE DOCTORS READ ????????????
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
hshbmom, your daughter's symptoms sound nearly exactly like mine.
My head sometimes jerks to the right or slams repeatedly against my pillow, my eyes roll around, my tongue sticks out, and my arms and hands will twist and gyrate. I'm sure it all looks very bizarre.
This is in addition to the locked-in problem.
I was tested for seizures last year but of course, all was normal. This testing was done in Syracuse, NY. I had four psychologists sitting around my bed after the testing turned out normal. There just isn't any thinking outside the box, is there?
I will look up Bea Seibert's posts and see what she had to say - thank you.
Oh, and Geneal, I have told my LLMD about this before but she just gives me a concerned look and writes it down in my records. Perhaps I'd best speak up and ask her what she thinks causes this, rather than keeping it all to herself!
Sometimes I don't do the obvious. Duh!
Thank you for your good wishes, as always!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hey Lyme lady,
You may want to change the name of your post with the edit function...to Frozen Man or something like that...that will get Bea's attention.
You may want to start a new post ATTN: Bea Siebert/Seibert I may have mispelled her name.
You can use the search function and find Bea's name, then you can find her member number. You should be able to pm Bea from any of her posts.
BTW, my daughter's left arm twists out, the right arm curls in toward her body. Her fingers close together while extended, she makes a gasping noise, and her head & tongue jerk to the right, her right shoulder goes up toward her head. Her eyebrows even pull up. She tries to talk & I can barely understand her when she "I'm having one Mom!" This looks kooky.
It doesn't happen every time after she's been sitting, just now & then. It has only happened once when she was trying to get out of bed. It used to happen 5 or 6 times a day, every day. Now it's down to once or twice a day, and sometimes only every week or so. The neurologist felt she'd outgrow it in about a year.
Sometimes they are less involved...just the head & neck, with a little arm involvement.
She was playing around with a cell phone camera today and noticed she has some assymetry in her face....her right eyebrow is drooping lower than usual and her right eyes looks smaller than usual.
There have been a few times recently when she had a "mouth" seizure...her mouth draws together , pulls to the side, and she can't talk.
Other weird symptoms...she began dropping her coffee cup when she first began Lyme treatment. She said she was trying to hold the cup, but she lost her grip...no strength.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
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Member # 9478
Topic: Lyme Teen w/ Seizures Told She's A Psyche Case
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
That's funny, hshbmom, I actually did read that article yesterday and last night I had terrible nightmares of my old GP holding secret meetings about how crazy I am and then abducting me and making me go through back surgery to find out if I "really had Lyme disease".
I actually don't live very far from this girl, Victoria, and I have signed up to join her when she gets her Lyme Disease Awareness Walk going.
She's a very positive young lady, and still a go-getter as she's always been. How they could say she has "deep-seated psychological issues" is beyond me. If these doctors ever take a history on their patients, they sure don't pay attention to them!
Take care!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Lymelady, That's really scary!!! I'm so sorry you're having to deal with this, not knowing what causes it.
It's somewhat similar to Parkinson's patients who freeze, but without the rolling of the eyes....and the fact that you are "frozen" for a long time.
Maybe once you complete the bartonella treatment it will be GONE!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Yes, Lymetoo, it was very scary. The longest that this "locked-in" problem has lasted for me is four hours. My husband and I were on a long drive back home from my LLMD last year and I spent almost the entire trip frozen and very uncomfortable in the front seat of our van.
I researched briefly and this can be caused by infectious processes in the lower part of the brain that control involuntary muscle control.
I thought, "Oh great", when I read that because I thought maybe sometime when it happens it will make my breathing "freeze".
I admit, I'm worried this is happening, along with the uncontrolled muscle movements. I DO have a headache in the back of my head almost constantly.
I will talk to my LLMD about it.
Take care, everybody.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Yes, I had this once and it was horrible.
I credit lyme meds for helping me through this. I have found bicillin LA to be the best drug to hit joint inflammation and stiffness.
Feel better, you are not alone.
Posts: 1603 | From ny | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My goodness, that would be scary. I can see the doc brushing it off if it only lasted a minute or so. But 1 1/2 hrs to 4 hrs?????
I'd(loved one) of been in the ER everytime it happened, by ambulance. I can't even image how frightened your family must be during these episodes.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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