posted
So tried to wake up this morning and couldn't move, talk or open eyes. Was just stuck paralyzed inside my body. I rested all day yesterday, but didn't think I needed a second day.
guess I was wrong. Fortunately hubby knows all the signs, and tended to me. eventually was having myoclonic episodes...the things a girl will do to move...with eyes rolling back, but passing vision.
then came the gutteral sounds, and was able to suck water from a straw, and then convince hubby to help drag my body to the bathroom. movement got much easier after I emptied my bladder. yeah!
Anyway, now it's late at night, and thinking is working again, and I'm hopefull that tomorrow will be a functional day.
Anyone else get like this? and if so, how do you see it coming and act proactively?
Have a good night! Posts: 663 | From NH USA | Registered: Sep 2004
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I get these when I start a new med... every stinking time.
I have had sleep paralysis a few times and when i am "coming out of it" I will get myoclonus seizures. Mine have decreased with antibiotics though so I think there is hope that I will not have these forever.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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posted
As I have mentioned before, hubby had these type symptoms a couple of times a week for the last year or so.
Pretty much the same symptoms as you except with him he would also have the clawhand (left) and his left face droops (Bell's Palsy), neck twisted to the left and tongue always protrudes
to the left as well. Sometimes can babble or talk, but is almost always confused to some extent. Episodes usually occur between 1:00 and 3:00 a.m.
I have some lovely pictures I showed his doctors.
The good news -- I think these spells are gone!
The one symptom the IV Primaxin seemed to clear up. It took him 3 months to do what is normally a 1 month dose (from mid November to mid February), but so far this symptom seems to be just about gone.
The oral colloidal silver (Argentyn 23) seems to be keeping him from backsliding -- only a couple of episodes in last 2 months.
The only thing that would work for him was using IV Ativan -- maybe you could take this orally as needed? I think you said that is what they gave you when you ended up in the hospital with the paralysis episodes a couple of times.
Actually I think you can give Ativan IM, but not sure if your hubby would do this for you or not.
Hubby still has a milder form of the "transient quadriplegia" -- my description for his episodes. If he sleeps on his right side sometimes he freezes up and can't roll over or
move. Usually he can still speak with these episodes though and is not usually confused. Only happens if he sleeps on the right side.
I usually stay up til 3:00 am until after he has his 1 or 2 nightly spells. It is just easier for me not to be startled awake by either the entire bed shaking, or him coughing or trying to have dry heaves or grunting in his sleep etc.
After giving him the IV Ativan I always had to massage and exercise his arms and legs for 15 or 20 minutes so they would limber up. He would be so tight I could lift his arm and it would raise
his head and upper body off the pillow and then it would just hang there in the air -- this is another movement disorder called waxy
flexibility -- his arms especially would just stay in whatever position I put them in -- kind of like playing with a Gumby toy.
A couple of years ago (I guess it was before the Babesia meds) he had another slightly different movement disorder called gegenhalten --
if I tried to straighten out his arm when he was having milder freezing up episodes it would snap back into position like a rubber band.
Then when I would try again it would be just like a rachet -- the muscles would relax in jerky movements a little at a time.
Holding his arm so I could give him the IV Ativan has never been easy because that has always been the arm that is the worst symptomatically.
And of course with hubby every time he starts to come out of one of these spells it goes into the coughing and dry heaves. If he is having
diapraghm muscle spasms then that was usually when he would lose consciousness for a few minutes as well.
IV push glutathione usually helped clear up the confusion and brain fog after these episodes -- 500 or 1000 mg over about 5 minutes. Also frequently gave IV push magnesium as well -- 100 or 150 mg over about 5 minutes.
Most episodes resolved in about 30 minutes and by then we were both usually exhausted enough to sleep.
If nothing else would work, I could massage on hubby's tummy and he would start coughing and trying to heave and then his muscles would start relaxing.
I have probably jinxed things now by saying this symptom is gone.
Hope this symptom improves for you soon.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
thanks bea, I haven't had the ativan. figure I'd better call llmd's office today, and give them and update.
my hubby does some IMT techniques on me, usually ones to initiate language, and often times after that I can drink through a straw. Muscle stuff slowly wake after that, usually starting with a very full bladder, and needing to be half dragged to the bathroom.
Some have said before that it can't be a "real"seizure cuz I don't loose bladder control. For me, my bladder gets "locked", and it's really hard to get the sphincter to release. once it does, other muscles begin to cooperate as well.
my hands stay clawed the longest, and comes back slowly with my grammer skills and cognition. yesterday I was incredibly light sensitive, until things normalized.
I did just switch from 200 mg iv dox/ day to pulsing 400mg 4 days on and 3 days off. Today I start on again. I hope I don't need to repeat the same next sunday.
LAte last night, my skin was crawling big time, and earlier in the evening, I had to dress in multiple layers of pj's and long john, sock and sweats cuz I was chilled and drafty, even though the house was not.
Often times the over dressing will lead to extreme sweat, but not this am. I'm kinda cozy and not looking forward to getting wet in the shower and re-accessing my port, and doing my B12 shot.
Can't I just hide under the covers?!
Snowflake...Thanks you so much for your sharing! I hope this is just a healing thing for both of us, and we both have it go away for ever. Bea tell you hubby I'm putting him in that prayer too!
Hope we all have a great day! Posts: 663 | From NH USA | Registered: Sep 2004
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I always use the term "seizure-like" episodes because I also got tired of hearing the phrase, "He is not having real seizures".
He does have the loss of bladder control from time to time (usually doing a major herx) and has even lost control of his bowels several
times (usually ended up in the ER and hospital when that happened -- would be unconscious for several hours and totally confused).
The other statement some ducks make is that it can't be a real seizure unless you bite your tongue -- he did this the other night in his sleep for the first time and neither of us knew it until the next morning.
Hubby tried 5 or 6 different seizure meds that didn't help with the tremors/myoclonus. Just gave up on that and have been stuck with the IV Ativan which athough a hassle does at least work.
Hang in there -- it can and will get better.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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