Apr 122015
 
Eriksgirls picture of me showing Anisocoria

Eriksgirls picture of me showing Anisocoria

It is not a tumor! 😉

Eriksgirl has uses my eyes as her personal gauge to see if I am near a seizure. Maybe that happened for her after my last seizure where my pupils were very different sizes, like someone with a concussion and this was before I hit the floor.  I told her they were not off by much when she showed me the picture.  She exclaimed they should be equal. 🙂

What I do know is that the Anisocoria (different pupil sizes) is relatively new for me, and not something I have had my whole life. This would make the Anisocoria most likely caused by Lyme, or MS. I think for either of these it would point to optic neuritis but my eyes are checked regularly (not to say that optic neuritis could not be missed). Other than that I have no great ideas other than a tumor, which I am pretty sure it is not that (recent MRI :-). (or I keep getting concussions, might explain my repeating myself so often to the kids)

I guess it will be something to discuss at my next neuro exam. I cannot remember the last time he examined my eyes. Fortunately, my optometrist has a really nice computer/camera that takes a picture of the back of my eye to look for problems. He is not a doctor, but he regularly checks the optic nerve.

Feb 142015
 

designated_drivers

I suppose this is my gift to Eriksgirl since she has been my “designated driver” during this period. I think she is the one most excited about my driving! 😉 I am not 16 anymore and driving is not fun, it is just a chore. Maybe I just need something more fun to drive, but that is not for the near future. If only I had a little more money for a professional chauffeur or valet.

Alarms have been set as reminders for my epilepsy medication. Hopefully all will be fine now.

Aug 232014
 

As I was recently pondering “do I really need to take my seizure medication. Surely I am better now.” As it turns out I am not better and once again another seizure from forgotten medication. Fortunately I made it to church safely with my children and my wife noticed me acting weird just before the seizure. Stemming to my early days she asked me a simple addition question and I think I immediately seized. Because she was next to me she able to “gently” lay me on the floor. Unfortunately like always I bit my tongue, and I think this was the worst time ever and I am still in the midst of recovering a week out. At least I was around good friends that helped me get back to the house. Eriksgirl says I respond well to her stern tone at this point when I do not no who she is nor who I am and I guess they were able to boss me to the car. The seizure took a huge mental toll on me and I forgot common items (passwords) that I had to work to dig them back up. Regardless, I simply returned back to my medicine and “get” the privilege of taking 6 months off from driving with Eriksgirl as my valet.

I realized writing about this seizure that I never wrote about the last seizure. The previous one was the worst for everybody else, for me they are all the same I do not remember anything but I bite my tongue and I suffer a loss of time. This time though, once again caused by missed medication, I seized while I was driving with the entire family in the van. Fortunately I curled up and Eriksgirl gently drove the van off the road. From this point on I do not drive if Eriksgirl is in the car. This was also the seizure that got dosage upped so I could withstand more missed doses before seizing because I only missed 2 before seizing this time.

With the last seizure it is fully my fault but I had grown complaisant and moved away from the pill box. I am now back on the pill box where Eriksgirl can second verify, if she likes, that I have taken them. On the plus side at the end of the 6m Eriksgirl should be a better driver from all the driving suggestions I’ll offer along the way. 😉

Sep 232013
 

Not quite that exiting. 🙂

For a while I have blamed the majority of my problems on my diet. My diet is a lot of bad habits but getting the desire and persistence to change is hard. Eriksgirl decided to sign up for Slim 4 Life to lose a few pounds, her friends have had very good results. I went with her to join the program. I could certainly stand to lose a few pounds but the goal was to establish better habits. We set up a meeting to get signed up and all was going well. The problem came when they were going over the paperwork and I had a medical condition that failed me from their diet, and I still do not understand. Continue reading »

Aug 242012
 

That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth. 😉 Continue reading »

Apr 282008
 

The only reason I continue to see my neurologist is because he treats the seizures. The reason I was not looking forward to this visit was because I was going to have to come clean about not treating the “Multiple Sclerosis.” When I suspected Lyme I brought the issue to him first, but he then referred me to an idiot infectious disease doctor. Because I did not see his doctor, and kept him out of the loop, he knows nothing about my Lyme diagnosis and treatment. Up until now he has incorrectly assumed that I have continued to take Rebif to treat my MS. The neurologist made it clear from the beginning that Lyme was outside the scope of his knowledge; keeping him in the loop would have turned into a unnecessary (narrowly avoiding an expletive) nag fest about the Rebif (it did digress somewhat to that point later in this visit). I brought Eriksgirl along to help keep up the fight. (Normally a visit is a quick follow-up and nothing of substance is discussed; no real need for Eriksgirl to be there and taking up her valuable time.)

We get the neuro brought up to speed that I am getting treated for Lyme, etc; leaving off the part that he referred us to an idiot. At first he wanted to move me to Tysabri because I am apparently doing so poorly on Rebif. At this point I came clean about not taking Rebif, which he could not handle; even with a Lyme diagnosis that is being actively treated. He then went on to add that because it is a vision problem he wanted to treat it aggressively and prescribe steroids (Solu-Medrol); though surprisingly not at this appointment. Of course I would not take steroids because they would only make things worse with Lyme due to immune suppression. Since he did not want to prescribe them now, but wait until the next appointment, that at least saved another argument. While he did fax in a prescription for Rebif it was a concession to avoid fighting. Also, they sent the prescription to MS Life Lines which was the wrong place to send it at this point; so that pretty much ended that issue pretty easily. I have an appointment coming up soon, and Rebif will probably come up. I will tell him I am pursing another path at this point, but that is for another upcoming post.

What I was interested in was idiopathic intracranial hypertension as a potential cause for my blind spots. Eriksgirl had already suspected I had higher spinal pressure because she had never seen spinal fluid tubes fill up so fast (she used to assist with lumbar punctures) when my fluid was drawn after my first seizure. Of course my spinal pressure should have been taken at that time; even though it wasn’t an ordered test. It is just good practice that if you are in that area you take spinal pressure. High spinal pressure can cause seizures. The neuro said that he didn’t think it was IIH induced blind spots because those blind spots (tend to be?) are around the optic nerve. I’m not fully convinced, but he is not ordering the test. Regardless, if it is Lyme induced IIH than the fix is antibiotics which I am already taking.

The neuro’s theory is a lesion in the brain causing the problem. Maybe. MRI time. At least it will be nice to see how the grey matter is doing.

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 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.

Dec 192005
 

Well had another neuro appointment today. At least I am doing well, but that makes me like going even less. The only reason I mustered the energy to go was so that I could get order to make sure my liver is hanging in there. I certainly don’t want it to fail on something not fun like Rebif! Eriksgirl asked why he doesn’t write anti-depressants. After a brief discussion he said he does, but does not write Wellbutrin. Of course his medical assistant did not make that clear. Apparently, this stems from the original Wellbutrin had a seizure rate of 1 in 200 as compared to the antidepressant norm of 1 in 2000. He said this has supposedly been fixed in the Wellbutrin XL (what I was taking), but he is biased against them now. Of course I would have happily tried something different had the MA made that clear. Of well, hopefully no more Solu-Medrol and the need for antidepressants.