posted
so, the newest chapter in my journey involved seeing an educational psychologist, hoping to get memory retraining. The baseline eeg showed multiple seizure activity with my eyes open and continus irratic signal with my eyes closed.
so now the powers that be want me to go for a 24hr eeg study, and think that I may need seizure meds. apparently my contious oss of memory has something to do with continous absence seizures.
and then sunday I spent too much time on the beach and had sleeping seizures leaving me to wake with total paralysis lasting for abt 3 hrs, only interrupted by myoclonic episodes.
to say it's getting old... otherwise, I feel like I'm really starting to see some nice improvement again.
please those of you that can tell me abt seizure meds speak up! and any info on seizure diagnostics is good too!
thank you knidly! Posts: 663 | From NH USA | Registered: Sep 2004
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Carol B
Unregistered
posted
All I can tell you about my experience is I have been diagnosed as having a "seizure disorder". I had a sleeping eeg done-but no seizure activity showed up at that time. Nevertheless, I was feeling between a rock and a hard place.
I really did not want to start taking seizure meds, but couldn't deny the seizure type episodes that I was having. So I decided to give them a try- and I am glad I did.
I was prescribed Keppra. The most I experience now are occassional auras. I still have my moments-as some will attest to, but my brain feels much "keener" now. My neurologist calls me an "exquisite responder"!
But he has also advised me I will probably have to take seizure meds for the rest of my life. This all occured before I was diagnosed with Lyme-I am now just into three months treatment for Lyme.
Who knows- I may discuss getting off the seizure meds with my LLMD when I feel comfortable enough about it. Perhaps in a couple of years.
posted
thanks carol...question, what difference in function has the seizure meds made? also did you have any side effects from the seizure stuff?
my seizure activity has gotten better with lyme treatment, but who knows I have had the seizure stuff a long time , and lyme a long time too. so for me it's a chicken and egg thingy.
Posts: 663 | From NH USA | Registered: Sep 2004
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Carol B
Unregistered
posted
I feel like there has been an improvement in memory issues-but I don't know if that is due to seizure meds or lyme treatment- but I would add-I have also adapted to memory issues by writing more things down, and telling people not to expect me to remember anything-so they have to remind me or write it down,too.
In other words-I have trained myself and others,too. So I don't know if my memory is better or I have just adapted.
My kids still get annoyed because they say I repeat things so many times. But they'd be annoyed by anything I do-they're teenagers.
As far as side effects due to meds- I have not noticed anything myself-and so far nothing has showed up in bloodwork-although I am going to have liver function tests this week, both because of seizure meds and antibiotics.
I haven't looked at the side effect for Keppra recently to refresh my memory-I guess if something really started to bother me I would look on the list to see if it was because of the meds.
Not sure if this answers your questions. I just woke up. As the day goes on and my brain wakes up I will reread this post to see if anything else comes to mind.
posted
thanks carol! I really appreciate you sharing. I'm just not good with this stuff. As you know lyme and coinfection is one thing...now adding the seizure stuff as a real possibility instead of just a lyme symptom, is pretty overwelming.
Anyone else have experience or info?
Posts: 663 | From NH USA | Registered: Sep 2004
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suki444
Unregistered
posted
I always thought seizures could be a sign of Bartonella infection? Anyone else heard this??
posted
yes- my LLMD told me that-which is why she wants to treat for Bartonella even though my bloodwowrk did not show positive for Bart.
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Achey,
I had some seizure activity when I started taking antibiotics last June. The episodes were periodic but pretty scary for me.
I never had any of the brain stuff done, but my LLMD decided in Dec that I had a clear case of Bart and prescribed rifampin. About two months into treatment with that antibiotic, all my seizure activity stopped completely.
So far, there's been no recurrence.
Like Emma suggested, I'm not sure this proves a connection between bart and seizure activity, but I have to say it's one symptom I don't miss a bit!
Hope you're able to find some relief.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
thanks Carol, Andie.... interesting. abt bart....llmd has said that zith iv and oral, doxy iv and mino that I have taken in the past, actually now on iv doxy should address bart.
PA seems to think that the extreme seizure and apralysis of sunday was a herx. Why am I having such severe herxes after 20 months of mostly iv treatment? Did 7 months of oral when addressing babs...
Well suppose to schedule 24hr eeg study this week. I guess we'll have to see what we see.
andie, glad you are finished seizures. Carol I hope yours are bart, and mine tooo.
Posts: 663 | From NH USA | Registered: Sep 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Achey,
I'm so glad I reread the beginning of this thread, because I had missed something important you said: that your seizures preceeded total paralysis on waking.
Achey, I had total paralysis during my first two major herxes (back in July 2005). In my case, the incidents were both preceeded by seizures too and each lasted about 4 hours.
After those two paralysis episodes, that particular symptom never recurred, but I did have more of the seizure activity, especially intense around Christmas.
I started my treatment taking oral ceftin and have stayed on that abx throughout, only adding the rifampin for bart.
I hope this is helpful. That paralysis stuff is scary, scary, scary. I ended up taken to the ER via ambulance where (thankfully) we were finally able to patch my LLMD into a conference call with the attending ER doc.
I'm so sorry you have had to go through that, too. The seizures and paralysis were probably my scariest symptoms.
You take care! Andie
Posts: 2549 | From never never land | Registered: May 2005
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Hope you can find some answers as I know how scarey these symptoms can be.
I am about 95% sure that hubby's seizures and seizure-like episodes are caused by babesia.
Recently tried to retreat this and hubby had one what I consider an actual seizure with loss of consciousness and the post ictal confusion. After that thought we had reached a turning point.
Unfortunately 45 days into babs treatment his G.I. symptoms became too severe and had to stop babs meds. Tried to resume babs meds after 2 weeks and only lasted 4 days this time before G.I. gave out again.
Anyway, I know there are others who have had seizures from babs -- Liz28 I think and minoucat or her hubby I believe.
If Babs is the culprit most likely your EEG's will be normal and seizure meds will have little effect -- at least that has been hubby's experience. I think it is lack of oxygen to the brain causing hubby's seizures (babs can block up the microcapillaries).
I do use IV Heparin (5000 or 10,000) units at a time and sometimes that can stop tremors and myoclonus (especially when hubby's head is going from side to side in a "no" motion). Also can stop headaches sometimes.
I think the reason IV Ativan helps hubby is that it is a muscle relaxant and it may be relaxing the blood vessels if they are in spasm so that more oxygen can get through.
Hubby had several standard EEG's plus one 24 hour EEG and a video EEG -- most were "abnormal" but did not show seizure spikes. None of the neuros who did these tests believed hubby was even sick (other than depression/anxiety)so not really sure how reliable the interpretation was. Also, hubby was taking Depakote at the time (a seizure med) so who knows if that influenced the tests.
Hubby finally seems to have licked the temporary paralysis episodes. IV Primaxin seems to have worked. Did what would normally be a 1 month dose over a 3 month time frame. Only 500 mg most days -- twice a day a few times. Recommended dose is 500mg 3 times daily. Have no idea why this particluar med worked on this symptom.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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