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It's me again..........I just watched my daugher have one of her episodes that seem to be seizures. She got very anxious then asked me to get her some water because she felt like she was
going to foam at the mouth like she did the first time when she woke up from a sound sleep having the shakes and she also gets a metal taste in her mouth.
She says it feels like she is shaking from the inside out and her brain feels like her brain is being shook like someone is shaking an egg. Then she gets real anxious, like having a panic attack.
Afterwards she is left with a headache and is unable to focus her left eye. Anyone have this problem or something like it???
LLMD called tonight and had no answer or what we should do about this........am at my wits end. Got some selenium vitamin A tonight, she is already taking C and E so that takes care of what
Mino said to try. LLMD wants to start IM Rocephin again......along with the Doxy and Melarone and of course actigall. He didn't mention what to do about the seizures.
GRRRRRRRR, I am getting very nervous here and scared to go to work and leave her alone with her 4 year old daughter.
We have all become accostomed to living indoors and having heat among other things so work is a necessity.
Thanks for letting me vent,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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I have a teenage son with neuro lyme and he has had similar sleep/wake transition problems and awakening seizures. The problem flares monthly with one bad week each month. One of his doctors recommended an overnight sleep study which was very helpful.
Posts: 23 | From Camp Hill. PA | Registered: Dec 2005
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Spoke with LLMD this am and he wants us to go to the hospital to urgent care and have blood work done and get an EEG. Her took are off all meds until we find out what is going on.
He said leave her on the Selenium, and vitamin A,C and E. He respects all the research the Lymies and families do. Lots of LLMD's seem to be open to alternative treatments along with the
antibiotics. We will go, but not mention Lyme to the Ducks at the hospital. Seems to do no good and they always look at us like we are nuts. We just say LLMD is our primary care physician.
Please keep her in your prayers.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Went to the hospital today and had CT scan and blood work. All normal......what a surprise!! LLMD said he will call later......why? Took her off all meds and just left her on the Selenium,
C, E and A that I put her on. Guess we will see what happens with her off meds. Personally I think it is the Lyme and Co playing games with her brain.
Being off meds won't make a difference.......I don't think. We will see. I am so frustrated at the moment. This disease is about to drive me crazy, I HATE it.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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My daughter had "seizure" activity like this and her EEGs were always normal. Her idiot pediatric neurologist then concluded she must be faking or schizophrenic. This was 7 years ago, before we knew the cause of her apparent neurodegenerative disorder NOS was really lyme disease.
I myself had some episodes I thought were seizure-like. I was jerking twitching involuntary muscles movements, couldn't talk without stammering and shaking from these episodes. And sometimes I lay in bed just jerking -- awake. Afterwards, terrified, like a panic attach.
EEG all normal. Neurologist to me: It is not neurological. It's anxiety.
I gently confronted him ("Whenver you guys don't find something on your tests, you say it is psychological. Well, I am a psychologist. It's bull****. It's a way of pretending to explain something you don't understand. Why don't you just say you don't understand it?")
He held his ground.
However, the next time I saw him we gained a common ground. "How about if I call it neuropsychiatric due to lyme, and explain the twitches as encephalopathy which comes and goes in various brain regions, restricting blood flow, causing inflammation, and then creating symptoms."
He said he agreed.
So I believe I do not have seizures, but have involuntary muscles movements, twitches, shaking, tremors, chills -- and they are neuro lyme related, due to infectious disease of the spirochetes.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I have had episodes which I can only describe as "seizure like" for a couple of years. In my case (just my case, which may or may not be relevant to you) I don't believe it is seizure, but inflammation in the brain caused by pathogen die off and neurotoxicity. The toxins seem to build up when I have a good herx going, and my body just can't process all the toxins. It seems like what results is inflammation, and a lot of effects from the inflammation. I have had good luck minimizing these symptoms with supplements (taurine and phosphatidyl serine) and prescription cholestyramine, which is a chelator, so it picks up the toxins and removes them from your body. Just my experience. Good luck!
docjen
Posts: 393 | From Washington, DC | Registered: Jun 2005
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Seriously though this can be very scary. Hubby used to have a simple Parkinsonian tremor, then when he started Lyme treatment -- herbal formula from Dr J in Wichita, Kansas (he's written a couple of books)-- he started having what looked like seizures -- ER docs thought they were classic tonic-clonic seizures but did not believe Lyme diagnosis despite positive PCR test.
This is before he had any antibiotics!
EEG's done prior to this and during this time were either normal or showed some mild slowing in the left temporal lobe if I remember correctly. Had been on Depakote (seizure med) for a year at this point as it helped some with tremors (more help with leg tremors than with arm tremors).
Tried 4 or 5 different seizure meds singly or in combination. Eventually stuck with using IV Ativan multiple times daily for last 3 years.
Initially when the "seizure" problem started hubby had 2 types of episodes -- I called them shaking episodes or "seizure-like" depending on if he lost consciousness and was confused and needed to sleep (similar to a post-ictal state).
I could give him IV glutathione to wake him up from the "seizure" so I could get him to the bed. A few times he lost control of bowel and bladder during these episodes, but he never bit his tongue so of course he couldn't be having a "real seizure".
In my opinion these episodes are caused by one of 3 things -- 1)neurotoxins from the Lyme dieoff 2)overall toxicity from meds and impaired G.I. and liver functions (for example -- hubby had an elevated blood ammonia problem for months following IV Rocephin) or 3)encephalopathy causing elevated quinolinic acid (the Healing Lyme book explains this further -- the body can convert serotonin to quinolinic acid by an alternative pathway when brain inflammation is present -- Resveratral could help here -- some nights hubby actually makes it through an entire night without an episode now!).
The sleep/wake cycle is frequently disturbed in Lyme patients. Hubby currently has what might be described as episodes of sleep paralysis -- I used to call it transient quadriplegia.
Steve will wake up and be unable to move a muscle -- sometimes he can't even speak or only babbles nonsense. It takes me 10 or 15 minutes of vigorous massage plus 1 or 2 mg of IV Ativan to limber him up.
Often during these episodes he will either have a headache or sudden eye pain and frequently he has increased skin sensitivity which goes away when I get the muscles limbered up. His skin will visibly ripple and shake like someone with a bad chill when I touch him.
After Lyme treatment began with antibiotics, episodes have of course never been witnessed by a physician as they generally occur in the late afternoon and during the night.
Gave up on ER's and hospitals and neurologists long ago -- LLMD neurologist simply wrote in his office notes -- bizarre movement disorders caused by Lyme or something like that.
Hubby no longer has the 24/7 tremors (24 hours a day/7 days a week), but just these "seizure-like" episodes which happen 3 or 4 times a day. He does have tremors/myoclonus for an hour or two either before or after these episodes usually as well. Often he says he feels like he needs to shake when he is not visibly shaking.
When hubby had what I considered actual seizures he usually would repeat the phrase "I'm not feeling very well" 2 or 3 times before the episode so I had enough warning to make sure he didn't fall and hurt himself.
I used to have a list of the things which most frequently triggered his "seizures". The most obvious was sudden noises such as a knock on the door or the phone ringing.
One other indicator for hubby is his bilirubin level -- early in his illness during the 1st 1 1/2 years when he was undiagnosed this would be elevated when he ended up in the psych ward (3 times) -- the only abnormal blood test at that time).
Now when his bilirubin is elevated overall symptomatology is generally worse -- still not sure if this is caused by Babesia dieoff or just overall impaired liver/gallbladder function -- all other liver enzymes are normal.
ICEiam,
How is your daughter doing now? I know this post is from a couple of weeks ago.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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