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TravisMN TravisMN is offline

Getting Comfortable

About Me

  • About TravisMN
    Seizure Background
    My seizures started after a brain tumor back in 1981. I went through about a dozen medications over the years. Recently (2012) I had a successful surgery that has gotten rid of my seizures.

    The brain tumor happened because of a genetic condition I have, Neurofibromatosis type 1.

    Some of you know me on FB. I posted it on there, but feel it should also be on this site. I know there are a few things I should tweak in here, but am not in the mood to. Feel free to PM me if you have questions I didn't cover.

    Let me try and share my life history with epilepsy. It's nearly 35 years…most of my life.

    A seizure first reared their ugly head in 1981 when I was 5. The year before I had a tumor removed from my left leg and we thought nothing about it. When the first seizures started it sent my mother into a panic. She rushed me to our GP's office 30 minutes away, and he administered a drug and it didn't end. He rode in the ambulance with me to the hospital and they administered a second dose during the transport. I need to check my records to see what was administered. It slowed my heart and breathing down to where they were worried. I awoke in a strange place, confused, with my arm pinned down. Not something a 5 year old ever wants to happen.

    This started the testing to find out what caused this. Mind you MRI's were JUST starting to come out, so they had to use the CT for imaging, and they did a procedure I recall somewhat similar to todays WADA. They doctor then started mentioning "Neurofibromatosis" in conversations to my parents. Something we had never heard about before. The GP was very thoughtful and handed my father some medical articles and like my father, he dove right into finding out what this was.

    The surgery was removal of the tumor. It was an astrocytoma, grade 1 (low grade). An astrocytoma is a "star shaped" tumor, usually non cancerous. They removed the majority of it similar to how you would core out an apple. This left the "legs" of the tumor remaining because they did not want to cause damage to functions. Those "legs" were found to have died off when the doctors ran an MRI about 10 years later.

    However I was left with seizures because of this. They started me off of Tegretol which had only recently been released, and later tacked on an older drug, Phenobarbital. I remained on this combination for over a dozen years when they took me off the phenobarbital. Within a couple years the seizures worsened and I had to start trying other medications.

    This is what I call the start of my "roller coaster" of medications. They are about to try medication after medication making my laundry list a dozen medications!!! Thankfully today if you don't have success control after only 2 medications surgery and implant devices are brought up as an option and you don't need to go through this chaos.

    I skipped ahead a bit there. During high school I was able to get my drivers license and drive for a few years I had good seizure control. My state was 6 months seizure free to drive at the time. When the control of seizures was lost, after a few failures, and losing my license for the third time, no accidents thankfully, I had to move where there was mass transit from the rural area I had lived all my life.

    I continued to try different medications. By now they had tried adding Depakote and Dilantin. They changed my Tegretol over to the extended release format. Switching doctors they put me on Lamictal and Keppra, So we are now up to 6 medications they had tried over time. Three med's at the same time had become the norm.

    I moved again. I had just met my soon to be doctor at the Stroll for Epilepsy shortly after I had moved to town. A causal five minute conversation at the stroll and my mind said "I NEED THIS DOCTOR"! I was able to get in to see him a few months later. We first tried adding Zonegran with a bad reaction of drastic weight loss causing me to never reach the destination dose. After stabilizing out I then was started on Topamax, while reducing the Dilantin at the same time. Topamax worked pretty good. I was down to 1 seizure about every 3 months for a while…until I had kidney stones from the Topamax!!

    A couple years before coming off the Topamax, I had once again switched doctors after my doc switched to sleep studies and the neurology clinic closed. I was in for a few video EEG's (my first time having them). They removed me from Tegretol after being on it over 25 years. This was done to try and get in a medical study (ended up not qualifying). They now added Lyrica to the Keppra and Topamax.

    When Topamax caused the kidney stones I was placed on Trileptal. This worked out for a bit. Around a year or so later I had low sodium levels and again came off the medication. A recently released drug was the next step Vimpat. While now having seizures about once a week surgery was brought up as an option. About 11 years prior the VNS had been brought up as an option but I insisted there were still medications out there and surgery was a last resort option in my mind.

    All during this time I had somehow remained optimistic. Hoping to get back to the control I had when I was in school. Being so young when my seizures had started I saw it as "normal" to have seizures and be on meds. I couldn't remember not being on medication or having seizures! I didn't know any others with seizures. Yet I continued to keep moving forward. Here is one of my musical references to the epilepsy. As artist Bob Dylan said in Tangled Up in Blue "You got to keep on keeping on".
    And I did just that. Trying the next medication in hopes of control. Now after all the extensive reading I have done I know this is not common to get control after 3 medications. If the first med doesn't work, your chances are down to something like 49% for the second, and only 15% with a third medication. I'm very glad I didn't know these numbers or I would not have had such a positive outlook.

    With a possible surgery on the table, they started a laundry list of tests. From a MEG or PET scan and 3T MRI, to getting in a test group for the 7T MRI followed by a WADA. So far everything was looking good, so they had me take the Neuro-Psych test battery. A couple months later they went ahead and installed the depth electrodes in the brain (in hospital stay) and removed my medications. This procedure confirmed where the seizures originated and confirmed they could remove the problem area without causing function loss. The electrodes they used also had a secondary function. After having the seizures they needed, and being placed back on my medications, they sent out charges to the electrodes to see what if anything would happen. This is done to even farther narrow down the point of origin in the brain and see what effects the patient has from the electrical charges.

    They wanted me to heal up, so surgery was set for 6-8 weeks after discharge from the depth electrodes. The surgery would be over 7 hour procedure. Thankfully they put me out knowing where they needed to operate and not need to do function testing during the surgery as is done in many cases. With an unexpected hiccup after the surgery that was resolved when I was readmitted, the resection was a success!! Musical reference #2 Peter Gabriel Solsbury Hill.

    What really had me on edge after this surgery was the anticipation of seizures that wouldn't come. It was "normal" in my mind to have a seizure every 7-10 days. Now all of a sudden I'm not having any? That took months to get over the dreading. It took another year plus to get back to functioning how I was before the surgery. During this time, 5 months after the surgery I had taken my road test and had my full driving privileges reinstated. I hadn't driven in 17 years. This made certain things much easier than relying on family to drive me, or using the bus system to get around in town.

    As I'm writing this (summer 2014), almost 2 1/2 years after the surgery, I am still at a quandary. What do I want to do with my life now that seizures are no longer a problem? Do I go back to school? If so, what field. Do I move? Do I start working (not the best time to get a job currently). The possibilities are vast. Yet I cannot make up my mind. Don't worry if you have issues like this. You are definitely NOT alone!

    Over time I have enjoyed flying with my father in small airplanes, and am even considering getting my license for Light Sport. Right now, never having a pilots license, I qualify for Light Sport just by having a valid drivers license. That is seriously all you need. Light Sport does not have the stringent medical criteria Private Pilot Class has. I have put this on hold with a bill is trying to work it's way through Washington DC that would get rid of the medical requirements for the Private Pilot license. With the Private Pilot license I could fly what I call "real" airplanes like the Cessna 172 and larger…up to 8000 pounds. Light Sport would limit me to single engine lighter than 1400 pounds. That would be aircrafts like the Piper J-3 Cub, the Champ, Ercoupe, or some of the home-built airplanes are also light enough.

    I am active in attending educational conferences and reading medical articles/books. I strongly encourage both the parents, significant others, and the patients to attend these. I try to attend at least one of the epilepsy conferences every year to keep up to date on developments. You will also find me at the conference for the genetic condition I have Neurofibromatosis, and the neuro-oncology conference. Thinking about that makes me chuckle.
    Here I am as a patient attending medical symposiums mostly attended by medical professionals. Seriously don't be afraid to go to these!! They often break off into groups for professional and more basic lectures. Even though it was over my head a lot last year at
    Treatments
    Keppra, Vimpat, Gabapentin
    Location
    Saint Cloud, MN
    Interests
    Photography, music, ongoing medical research.

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  • Last Activity: 04-26-2016 10:06 AM
  • Join Date: 03-06-2016
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