posted
I would like to know if anyone else has this type.
At night when I am going to sleep, just before I fall asleep my left arm will start flopping around. To explain if you were lying down with your left arm at your side and your hand on your chest, then rotate your arm to the left, then back and forth. I could hit someone next to me.
I also sometimes wake up in the middle of the night with a rapid sit-up in bed or both arms reaching up and hands opening & closing like I am trying to climb a ladder.
These went away for a few months and are now back again. I am wondering if they are related to babs.
Anyone else?
Posts: 45 | From NC,USA | Registered: Jan 2004
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posted
Before my last round of IV antibiotics, I had lyme induced siezures. My llmd called them pseudo siezures, but there was nothing pseudo about them. There was another name for them, but it was long, and I don't remember it.
At times, I'd be talking, then stop, and not be able to speak for what seemed like days.
My boyfriend witnessed the worst when I was sleeping, and I have no recollection of what went on.
I was given Neurontin, Topomax, Diamox and Clonopin. I was allergic to Diamox, but the other three worked well to keep me settled. I don't take any now, and all seems to be well.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
Some years back I use to get seizures so bad I would tell god to end my life they were that bad. I had them just about every night for a few years. The implosions in my head I just couldn't stand anymore.
Msgmyth.com changed all that. They got rid of my seizures in just a short period. They taught me about msg & it's aliases & all about glutamate & 'free glutamate'. They put me on the msg free diet & a new way of cooking. Too much glutamate in your brain excites nerve cells to death & this is what causes seizures. I haven't had a seizure attack in about 1 & 1/2 years.
Till now. I recently seen my first LLMD. She wanted to put me on cholestyramine & amoxicillin. I explained to her the excipients in the meds could have 'free glutamate' & give me seizures. She gave me a look like what the heck are you talking about. Well after a dicussion she got me to trying them.
Well a couple of nights ago they started, just not as severve as before. Well it's obvious what the problem is. The free glutamate in the meds. So needless to say I stopping all meds.
I also have problems with supplements. All I have to do is take one little gelatin capsule & it will give a seizure. Also binders, fillers, & coatings give me a problem in tabs.
My next appoitment is on the 22nd of this month. I telling the doc I can't take meds of any kind. Hopefully there's a alternative.
Well like I said...I had a seizure the last 2 nights. I will report back tomorrow I how I made out with tonights sleep.
Pat Sr
-------------------- Pat Sr Posts: 63 | From Toms River,NJ | Registered: Oct 2006
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posted
Before they figured out I had lyme - the neurologist said I had 'seizure like activity' in my brain. I felt like I would get pins in an needles in my head - always when laying down at night - my face would often get numb. Hasn't happened in several years.
I had a mini-episode a few years ago. I become extremely fatigued afterwards.
Posts: 298 | From Maine | Registered: Jan 2004
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Cobweb
Unregistered
posted
LLMD calls it a seizure disorder. Neurologist calls it Simple Complex Partial Seizures. In any event-it was the last straw that drove me to an LLMD .
I don't know what happens at night because my cat is not talking.
But I can tell you during the day- at work- I would go into what I call "disconnect" or "fade out mode" with some form of repetitive motion which usually ended with my being pulled through the vortex back to reality with people staring at me wondering what was going on.
Things have improved after neuro put me on Keppra-and the feeling is that once I am done with Lyme treatment(will there ever be such a day?) we can try discontinuing the anti-convulsants and see what happens. I'm in no hurry to get off the Keppra .
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I have what is called myoclonus. This seizure like activity makes a body part jerk. For example if my legs jerk when I am standing I will fall down. Or sometimes my jaw will slam shut or my arm will jerk.
Right now I have them pretty much under control with klonopin, but if I am stressed or tired or around too much stimuli such as noise or crowds I will get them.
Definitely get help from a neurologist. I had never thought of the MSG aspect, but that could be a factor as well. Certain medications such as rifampin will increase them as will antidepressants. Good luck and God Bless. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 9020 | From Illinois | Registered: Aug 2004
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I had one seizure when I was taking doxycycline at 400mg/day and had not been taking that dose for very long. I stopped taking it then and nothing else happened afterward. I'm not sure if it was a drug side effect or if it was just getting to the lyme in my brain and upset it.
I wonder if treating lyme disease, at least in some patients, raises the risk of them having seizures, especially with the medications that cross the blood brain barrier, as, up until then, I'd never had one?
At any rate, I hope that if you are having them, you can find a way to resolve them.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
I've had a type of seizure described as Paroxysmal Limbic Discharge, this is some sort of weird firing off of electrical impulses in the brain but all the studies I can find about it are too technical to understand and if I try too hard I'm scared I might set one off!
It made me shiver and go rigid and I couldn't talk properly, also felt like I was choking, the ambulance crew took me to hospital but as usual they didn't have a clue.
My LLMD said these are pseudo seizures but that doesn't mean they are not real, it's the term they give to non-epileptic seizures. He said he's seen them happen with lyme and it could be caused by the inflammation of bb die-off.
.
Posts: 51 | From England | Registered: Oct 2005
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posted
As to a followup to my last post on this thread I'm happy to report I had no seizure last night.
It is to my understanding that some individuals such as myself are in much advanced stages of lyme. When it affects the brain we must be very careful. Glutamate upregulation is known to be a serious problem in chronic lyme.
Bb die-off? This can't be true. I've had in the past hundreds of seizures. Did I get better...no. But I did learn how sensitive I am.
Pat Sr
-------------------- Pat Sr Posts: 63 | From Toms River,NJ | Registered: Oct 2006
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posted
Yes, an increase in inflammation during die-off can be involved in some types of seizure and these studies seem to suggest that seizures can increase inflammation, pre-disposing the brain to further damage
posted
thank you everyone for responding. I asked this question because recently my brother had an episode that he believes is some type of seizure. He did his homework and seems to think he has quite a lot of the symptoms of lyme. Of course its a good chance he has it as I and our sister also have it. Hes also been bitten by lots of ticks in the past. Hopefully he will see a lyme doc soon. Thanks again.
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
**note: temporal lobe epilepsy {TLE} is the same thing as partial complex seizures ..........................................
it is VERY IMPORTANT for all neurolyme patients especially those who have been dxd with 'partial complex seizures' or 'temporal lobe epilepsy' to be aware that a B12 deficiency {which often accompanies chronic neurolyme} CAN result in an EEG pattern which is IDENTICAL to what is seen in bilateral temporal lobe epilepsy.
if a neurologist is unfamiliar with lyme {as most are} and runs an EEG on you while you are B12 deficient, it is very possible that you will end up with a mistaken diagnosis of temporal lobe epilepsy, since these are "psychic" seizures as opposed to motor seizures, and the neurologist is likely to misinterpret the neuropsych signs of neurolyme as being indicative of psychic seizure activity especially in the presence of diagnostic EEGs ...as opposed to low B12 {many neurologists are unaware that lowB12 can cause aberrant EEG patterns}
. and low B12 levels begin to affect the CNS long before they ever cause any anemia.
in addition to the B12 issue, neurolyme {like most chronic subacute encephalopathies} can cause EEG distortions by itself, due to tissue damage and the like as a direct result of the infection.
finally, a diagnosis of temporal lobe epilepsy in an adult over the age of 20 should never be accepted as a final diagnosis. in adults, TLE or partial complex seizures are always syndromes as opposed to a direct cause of disease...60%+ of adult onset TLE is antecedent to brain tumor development. the rest is a result of infection, traumatic injury, etc. if your doc finds evidence of TLE and refuses to investigate further, find a new doc and/or hire a lawyer.
posted
Hello, I have a movement disorder called myoclonus that was caused by Lyme disease. My limbs jerk uncontrollably. It looks like seizures except I remain conscious, and I treat it with the seizure med Zonegran.
Take care, Ms. Myoclonus
-------------------- Posts: 122 | From Texas | Registered: Jan 2005
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