ArtistDi
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Member # 2297
posted
I had an EEG done back in July and since neuro was on vacation in August, didn't get results until yesterday. Since I was off antibiotic treatment (story too long for new folks, old news for long term folks), the seizure activity changed and is stronger?
I have some myoclonic activity, but not the major firing off in my head that I used to have.
Anyways, I am sensitive to meds, and doctor wants me to try "Trileptal." Anyone on this? Good or bad experiences noted.
Anyone know others with lyme-based seizures that eventually lost them? I just hope I am not going to have a whole life full of them.
Thanks. Di
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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ArtistDi
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Member # 2297
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Up please
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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SunRa
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To those on Trileptal, make sure your dr occasionally checks sodium levels. The last few months my sodium levels have been dropping quite a bit, enough to cause potentially dangerous symptoms. So I am slowly weaning off the drug.
I have other issues that may cause low sodium as well, but it is a documented possible side effect with Trileptal (although I dont think its too common).
minoucat
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Member # 5175
posted
Hi Di. My husband had pretty significant seizures -- grand mal-like-- for a couple of years. It came on slowly, got intense for a while, then went away entirely. Very little myoclonic activity, but there was some of that, too. He took Elavil for a while, but I'm not sure it did much. We do know that he was having some sort of major dopamine malfunction at the time, and MAO inhibitors did seem to help a bit, in general. His MRIs and EEGs were normal the whole time.
He hasn't had them in several years. I'm not sure what treatment did it, but he definitely hasn't had them after IV doxy and flagyl -- even though he continued to feel lousy in other ways. This was all before the coinfection info came out. Along the way, it seems that he got rid of mycoplasm and erlichia, but not babesia and bartonella. Still has Bb.
Very recently, he's been having a few precursor-to-seizure feelings -- never gets all the way to seizure, but he occasionally feels light headed, and he says there's a certain ozone-like smell that's very distinctive.
The doctor suspects that bartonella is the culprit, so we'll be treating for that. I'll keep you posted.
posted
Di, I don't take trileptal, i take dilantin - doc tried me on depakote and that was awful. I have had no side effects on dilantin (that i know of).
posted
I have myoclonic seizures. Keppra kept them at bay for awhile, but then after an increase in seizures we added a small amount of clonazepam(Klonopin). It has made an amazing difference and I have not had any side effects except a little drowsiness the first few days.
Posts: 10213 | From Illinois | Registered: Aug 2004
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hello i can't give you any input on that medication, i am on dilantin and neurontin seee the llmd on tues. i am still having seizures that are very myoconic if somebody isn't with me and i am walking i fall after my neck starts jerking and my face and mouth lock into place they are horrible. does anyone know why these occur and does it have anything to do with an abnormal spect scan showing decreased circulation or metabolism to the thalmus? i have only been on dilantin 2 days i hope something helps pretty soon.
karen
------------------ waiting and praying for a miracle
Posts: 106 | From south western new york | Registered: May 2004
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lla2
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posted
Di,
sorry to hear about the increase in seizures...sounds like maybe the bartonella could be getting worse? that's what happened to me..took about a year and then the seizures got much worse.
I'm on .5 mg of clonazapam take 2 at bedtime for them. Haven't had one since last NOvember, not sure if my bart is gone or the clonazapam is just holding htem away. Dr. H will slowly d/c me off it when i see him next month and we'll see...
Hope you feel better soon.
Love Lis
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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ArtistDi
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Hi Everyone (Hi Lis),
I saw neurologist and after talking to me in person, he feels these are not "typical" seizures, but more an aggravation from the lyme. So we will stay the course with Klonopin and see how I do.
I started the Samento protocol four weeks ago because of my sensitivity to meds. I just think the lyme and co-infections have been having a field day with me when I couldn't be on treatment. So....we will see and hope that the Samento will eventually do more for me.
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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lla2
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Member # 2364
posted
di, maybe trying low dose meds for bart would be the answer..that's what I did...pulsed in levaquin only for 10 days a month for 3 months and it seemed to get rid of the bart and the seizures...
maybe that way your body could handle it. I hate to see the seizures keep getting worse on you, nad the bart keep getting stronger, or the lyme...but from what I understand from research lyme won't give you the sezires just the coinfections,which will continue to get worse...
please be careful...
Lis
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
fro those people who are experiencing the myclonis seizures can you explain to me what happens my eeg and mri came back neg. my spect scan was abnormal though, in my body it seems as if my body just wants to shut down.
karen
------------------ waiting and praying for a miracle
Posts: 106 | From south western new york | Registered: May 2004
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