Sep 192007
 

As a little background I spent 3 months in PA being treated for the Lyme, etc; but more on that another day. Regardless, after 9 days of waiting (5 persistently trying, 4 giving up) I finally got a phone consult with the doctor. During the wait I stopped Levaquin because I could not get confirmation from the Lyme doctor that it was safe in light of the seizures (the drama and irritation surrounding the delay are not worth going into).

Moving on, his diagnosis was that the seizures were caused by demyelination (lesions) which was caused by Bartonella (and the Bartonella toxin). Seems reasonable since my neuro thinks the seizures are caused by a lesion too. The Lyme Doctor thinks that within a year the lesions will heal and the EEG will return enough back to normal to no longer need drugs. For now he wants me resuming Levaquin, but on a lower dose (exactly why I wanted a call-back).

He thinks Bartonella (probably limiting to Bartonella with neurological involvement) carries about a 20% incidence of seizures. Of the types of seizures Tonic-Clonic (Grand Mal) are the least common; lucky me. The Lyme Doctor said he has Petit Mal (Absence seizures); which he thinks we saw one day (and we might have). He added that the absence seizures are the most common for Bartonella related seizures. He also said that had I gotten a SPECT scan, like he had wanted, that probably would have shown the abnormalities that lead to the seizures and he would have put me on Depakote (the drug he takes for his seizures) preventively. First, I would probably need something better than a SPECT scan to agree to start taking anti-seizure drugs preventively; maybe with an EEG, but that would probably require the neurologist agreeing too. Secondly, the reason he said he wanted the SPECT scan was to check the blood flow in the brain; which we can assume is impaired and I assumed, probably correctly, that the SPECT scan was going to be used as a tool to track progress. Had he mentioned this reason maybe I would have gotten the SPECT scan; though an EEG would probably have been better and more effective (not that I am suggesting getting an EEG preventively). I personally think the SPECT scan is his scan of choice, and that reviewing my old MRI images would have been more than adequate. Especially since I have had lesions where he suspects the seizure is starting.

On a side note, as we were going over my seizure clinical history today we covered the hospital neurologist. This neurologist was insistent that based on my EEG that I had epilepsy my whole life. He was certain that I had definitely had seizures before, but maybe they were just staring spells. We assured him that was not the case, and there had been no seizures. He did not believe us. At this point he had basically called me and Eriksgirl idiots, and/or liars. One has to think that absence seizures are awkward and obvious as you don’t respond, etc.; while you may not think seizure then it would be memorable when asked about them later. With his winning bed-side manner he actually thought that I might come to see him for my seizures after I got out of the hospital. Apparently, we are not as big of idiots as he thought.

Sep 162007
 

I’ve now seen the doctor following the second EEG. The most notable thing was that the seizures were not of the type he was expecting, and are originating deep within the brain. The seizure type is Primary Generalized for those really interested. Of note the drugs I am taking are not effective against that type so I have begun the switch to Topamax; which carries the nice side-effect of a little weight loss (and the negative of an increased risk of kidney stones). The neuro still believes that the seizures are caused by a brain lesion; just one very deep. He still says it is possible that I could heal, and not need the medication; but the focus needs to be on finding an anti-seizure drug I am comfortable with and can take long term. He also seemed to be less enthusiastic about being able to stop the drugs, but did consider it a possibility. I have not been able to get through to my Lyme doctor, more on that later, so I don’t know what his take on the seizure pathology.

I also asked about weaning off of the Ambien since I noted that I had a seizure the day after suddenly stopping the medication. He agreed that, in my case, I needed to wean off, but since I wasn’t having any ill effects from the Ambien CR he wanted to wait until the Topamax was at full dose. Seems reasonable.

I also asked if the EEG induces a seizure does that extend the time without a license. He said no, what they are looking for is seizures under normal conditions. That is very good news, though from reading the EEGs I don’t think I am at too high of a risk to seize from one.

Speaking of the EEGs I have both of the reports, and they read worse than an MRI radiology report. Maybe I will get around to posting a copy of them, but I would think they would be less interesting than the MRI reports; which are probably not that interesting. I am going to try and get a copy of the EEG, and the brain waves would probably be a lot more interesting.

Sep 092007
 

Last Tuesday I had almost back-to-back seizures and got to spend a few days in the hospital. I was already displeased with the gout being “one more thing” so the seizure definitely kicked it up a notch. Unfortunately, there is no clear cause, but the Levaquin definitely played a role since it lowers your seizure threshold. Secondarily, I suddenly stoppled the Ambien CR because I wanted to get off that drug. Unfortunately, suddenly stopping the Ambien can cause a seizure; not that I would have taken that too seriously before the seizure, but having a seizure the next day after suddenly stopping doesn’t look good (of course I’m back on the Ambien CR so I need to ask the neuro how I can get off safely on my next appt). Of course, because I didn’t take the Ambien that night I didn’t sleep well, and that also increases the risk for a seizure. I started a new antibiotic the night before the seizure (Septra DS) and I didn’t react well to the drug (shortness of breath, etc. so maybe an allergy); so that could also have played a role. All of those drug interactions before even considering that Lyme and Bartonella carry an increased risk of seizure. I went to see my neuro and he thinks that this was probably an isolated event and in 6-9 months can probably wean off the anti-seizure medication (pending, I’m sure, a lot of EEG’s). I guess at least I won’t have to worry about driving for a while (TX state law is no driving for 6 months).

Since writing the above (I’m really slow on posting lately) I’ve had another EEG. The tech got nervous after the strobe part of the test and would not proceed with the hyperventilation part of the test. The tech apparently thought that after the strobe results I was too high of a seizure risk for the hyperventilation test. Of course I didn’t have a seizure during the full EEG (hyperventilation and all) a matter of hours after the first seizures, and I am sure I was at a higher risk then (I’ve been on anti-seizure drugs since then so that has to help some). Overall, I think the tech was a little high-strung, and overly cautious. On the other hand if I had seized I am sure the 6 month no-driving clock would have started over; so maybe it is best to be a little more cautious. What I am curious to see is if my neuro is still optimistic about this being an isolated event after the latest EEG. On the other hand I am sure the Levequin is still playing a negative role so I am more interested in an EEG once I am off that antibiotic.