lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Anyone here experience something like my latest problem?
Two nights ago my left arm started to shake, my forehead got itchy, and then my eyes rolled back in my head.
Next thing I know, my eyes are whacking out on me. They're rolling around, moving back and forth rapidly, and my eyelids are blinking really fast.
My husband gave me three valiums and this didn't help. I thought I'd sleep it off but the next morning the problem continued and worsened.
I called my LLMD and she said my brain stem is infected and it's affecting my eyes. She recommended phenobarbital but couldn't prescribe it.
My husband took me to my family doctor's and they took one look at me and agreed I needed anti-seizure meds.
So, now I'm on 100 mg phenobarbital at night before bed.
I took it for the first time last night and woke up this morning feeling like the walking dead. But, my eyes only rolled around for about 5 minutes today.
The only thing is, I'm very tired from this new drug. And I feel like my eyes want to roll around but they're being "controlled" - you know what I mean? Like the pheno is just masking a major problem.
My brain is so fried from this disease. I feel like h-*-l-l.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
My daughter's llmd said a similar thing about her...that she has involvement of her brainstem, leading to cranial nerve symptoms and other diffuse neurological symptoms.
Here's some of her neurological problems:
Her eyebrows are at different heights, one eyelid droops lower than the other, her eyelids have some sort of weird flickering spasms which make it look like she's squinting or trying to wink, her eyeballs try to roll up in her head, her mouth draws together and her tongue pulls to the side, sometimes she has trouble swallowing and chokes on her saliva
Almost every day she has some sort of seizure like episode induced by sudden movement...her arms do weird things, pulling up, while her hands take on an odd pose, her head & neck pull to one side, her eyes rollup and out to one side, her mouth draws together & her tongue gets in the way of normal speech. She's awake when this happens, and she cannot speak normally. These things last about 10 - 15 seconds.
She's supposed to go to Columbia for a neurological evaluation...hopefully we'll find out something.
No one has prescribed anything except anti-seizure medicine. The first was carbamazine (tegretol), then lyrica & lamicatal for it's pain relief and anti-spasm activity.
Have you had a MRI or a spect scan of your brain?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi hshbmom, no, I've never had a spect scan but I have had MRIs which showed nothing wrong.
I'm now on phenobarbital as needed. When my eyes start to roll around I'm to take the anti-seizure med. It has a long half-life so I don't have to take it every day.
Your daughter's symptoms are very much like mine. My head twists to one side, my tongue sticks out, my eyes roll back, my arms and hands take on odd postures, etc.
My LLMD put me on ceftin when she put me on phenobarbital. I am now dealing with a horrendous headache.
Thanks for letting me know I'm not alone with my set of symptoms!
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
FWIW, my daughter's LLMD thinks she has sub-cortical seizures due to Lyme borreliosis complex. She has clinical diagnoses of Lyme & bartonella.
He said the scans come out normal because they don't measure the sub-cortical region of the brain. I think he was referring to the EEG when he made this statement.
I've heard her seizure's called non-epileptiform seizures and also a movement disorder.
Her primary limiting symptoms is pain, whole body pain that hasn't responded to medicine she has tried. It's in her muscles, joints, bones, literally everywhere except in her head.
The referral to Columbia has fallen through; they don't evaluate pediatric neuro-Lyme patients.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by hshbmom: Her primary limiting symptoms is pain, whole body pain that hasn't responded to medicine she has tried. It's in her muscles, joints, bones, literally everywhere except in her head.
Nancy, is your daughter taking magnesium and fish oil supplements?
These can help to reduce pain and inflammation.
Also, proteolytic enzyme therapy, like Wobenzym, can reduce inflammation and pain.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
It is not at all unusual for an EEG to be negative even in the presence of severe epilepsy.
People with seizure-like episodes might want to consider getting a family member or friend to try and videotape them as this might make it easier for an LLMD to know what's going on.
Lyme is also known to cause stroke-like syndromes which could mimic seizure. And don't forget that Lyme can cause far more problems with the cranial nerves (controlling muscles of the eye, tongue, face etc) than the short-lived Bells Palsy that the Steere camp talk about.
Elena
quote:Originally posted by hshbmom:
He said the scans come out normal because they don't measure the sub-cortical region of the brain. I think he was referring to the EEG when he made this statement.
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
| IP: Logged |
Please bare with me, as I have been pretty sick all week , and logged on to see if i could find help for myself...
then i saw your post and wanted to help you, as i have something very similar, more likely, the same.
It sounds like what I experience almost daily. My llmd calls it, "myoclonic jerking episodes".
I have had lyme and babs for 5 years now, but went 2 years undiagnosed and untreated.
I had a brain scan 2-1/2 years ago,and it had progressed into my brain at that time, however it wasn't until about 10 months ago, that the "episodes" began.
I call them episodes because they are unlike seizures that are more common to a diabetic, from what I understand.
Here is where it gets interesting...
Unfortunately, i married a con-man, who took all my money, and my home, by equity skimming off my real estate.It was pre-marriage money...
While I lay sick and dying from this disease, he was able to forge my name without my knowledge......
The only reason I bring this up is because 2 months ago in divorce court, My llmd and I proved that i cannot work due to all my lyme conditions, and what does my "x" do?
He takes the doctors letters from court, and a list of all my symptoms; the Myoclonic jerking episodes being the main reason.
He brings this to the Department of Motor vehicles and tries to have my license suspended for good, on reckless driver and a hazzard.!?!
WeLL, I have a clean driving record, and after much stress, getting my doctor to call, then fill out 8 pages of paperwork,
The D.M.V. was actually disgusted from his attempt at such an obvious act of harassment.
I wont go on, but my point is, that i learned not to call them seizures. Technically, they are called "episodes".
and although we take "seizure" meds, don't be confused by the separate type of symptoms.
You would be amazed at what bored and cruel people will do to fill up their day with other peoples business. When we are sick, this stress just makes it all the more worse.
My symptoms for myoclonic jerking episodes due to Lyme disease are:
1).bells palsy in the left eye brow, which sags, numbs, and twitches. This has been for about 3 years.
2).Jerking is in most of my left body side, and my head and neck. (It forms a giant capital "L" when it gets moving fast)
3).My eyes are rapidly twitching and blinking.
4).My left arm and left leg flop about at their own will. I have tried to sit on my arm, but it doesn't work; the movement still happens inside the arm itself.
I have had a friend try to hold me down, but it just feels worse.
5).Also, i cannot speak in complete sentences during these episodes.
6). They last from 15 to 20 minutes and have only been stopped by medication and sedation through the meds.
7).I have found that I will have about a 5 minute window when I can feel one coming on... like my chin will start smaller jerks, and so on. This is when I immediatly take the seizure meds. (anti-muscle spasm) if i am having a full on episode, i will take 3 pills, but 2 if i catch it before. 8). I take one at night because I twitch more at the end of the day, especially if it was active. The more stress you have in a day, the more chance of an episode.
But this is what I have found works for me, and everyone is different.
9).the Magnesium pills work well daily for less stress.
******************************************* There are so many well informed people on this wonderful site that can tell you just what to do.
I can only tell you what I have experienced and i just wanted you to know that you are not alone. take care, catherine.
BTW- After an interview with the department of
motor vehicles, it was determined that Myoclonic
Jerking episodes do not warrant a suspension of a
drivers license , so anyone who may be worried
about this, rest assured, i was just put through
it.
best of health to you!
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
God bless you, Catherine, you've been through hell. I'm so thankful for my supportive husband - I just can't imagine what I'd do in your situation.
Your symptoms sound almost exactly like mine. Thanks for all the helpful information. I will call my symptoms "myoclonic jerking episodes" from now on. That way no one will accuse me of having "fake seizures" anymore. Grrr.
At Christmas time two years ago I fell to the floor with an episode and my niece, a physician's assistant who doesn't believe chronic Lyme exists, lectured me about taking valium. She thinks my symptoms are due to drug addiction!
She also told me she thinks I should have my license taken away. I told her I don't lose consciousness and I don't drive when I'm having a bad day.
She dropped the issue but it still made me nervous. Several people have asked me if I think I should be driving being as sick as I am.
I, too, have a clean record (except for one time 15 years ago (pre-Lyme) when I pulled out in front of a pickup truck, but that was due to lack of sleep.
I don't think I'm a danger on the road because I'm very cautious about my abilities. If I had my license revoked it would be devastating for me.
I have small kids and I take my youngest to preschool most weekday mornings. I try to run errands and grocery shop as much as possible to help my poor, overwhelmed husband.
I feel like a revolving door prisoner as it is, so I'd be devastated to lose any more freedom.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
posted
Both symptoms (arm or leg shaking and those kind of eye disorders) are also classical signs of delayed fluoroquinolone toxicity and common among non-lyme people that have taken cipro, levaquin, avelox, tequin, floxin or the like.
I do not know if you have taken a fluoroquinolone for a long time in the last year or so, but if you have, you might consider the possibility of the antibiotic being the cause, or at least, an important co-factor of your symptoms.
I hope they resolve soon.
Posts: 94 | From canada | Registered: Nov 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Wow. Really interesting post. I'm so sorry for you all going through this sort of thing.
I'm especially sorry for you "view from the curb"... I've been through repulsive, stealing boyfriends - when I didn't have Lyme & it's awful. Dealing with that & brainfog, etc. is very hurtful... HUGS to you!
I know many of you don't want people sitting around feeling sorry for you but it's the best I can offer right now.
Maybe it would sound more positive if I said I'm sending you some healing energy & I hope the higher beings out there will bring us all some help from all this suffering we are enduring.
None of us asked to go through this. How could we ever believe it if we didn't experience it ourselves...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
What kind of medications are you on? Anything like Compazine, Inapsine, Phenergan, Reglan, Thorazine... any kind of drug that can cause extrapyramidal reactions?
I have seen Inapsine cause a ladies eyes to involuntarily roll back in her head... and Compazine and Phenergan to cause involuntary movements... in a few cases SEVERE and DRAMATIC!
Mild extra-pyramidal reactions to this class of meds is actually quite common... but often more agitation/anxiety type of reactions.
Posts: 70 | From AZ | Registered: Sep 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic