My current story
 
I want to say thank you for choosing to read this and if you so choose to donate thank you so very much.
 
Epilepsy is the fourth most common neurological disorder with meds only treating about one third of epilepsy patients & some having drug resistant epilepsy and needing more than just medications to keep their seizures under control. 
 
I tell you all this as back story because I fall among this group.
It all started my sophomore year in high school about 13 years ago. But we won’t go that far back or at least in super detail.
I will just say that I had a hard time figuring out they were seizures & I couldn’t even do it here in Montana. I had to go to Spokane’s epilepsy unit (first time I was 15). We got things figured out and I was good for just over five years.
 
Then a neurologist in Great Falls wanted me to try a better medicine & that set me off for a few months again. Then I gained control with meds for a few years.  I even got one year free, no medicine or seizures. Man was that a fun year. I actually felt like a young adult. I didn’t have to tell myself no to many normal things people take for granted like just a fun night out.
 
Well..... repeat back to seizures and man are they back with a vengeance. In 2017 I went to Spokane at the end of the year and then they sent us to Seattle. That is when we decided I should try a VNS (Vagus nerve stimulation) in layman’s terms it is like a little battery that shocks me to help prevent seizures or I can shock myself if I feel one coming on.
 
Well that helped in one sense and at the same time it didn’t and did something to annoy my body. As of November 2020 I have been having horrible cluster sets or seizures, sometimes upwards of 200 yes I typed that correctly.
We went back to Spokane again & I did a week in the hospital when I usually do three or four day’s tops. I was incubated (put into a coma) so that my body & my brain would rest but it still continued to seize for a period once incubated.
 
Then once discharged we stayed in Spokane because the town I am from is not equipped to handle someone like me medically and that is a very scary thought sometimes. So they changed my meds but I am still having a lot of clusters. I have been accepted to the epilepsy unit at the Mayo Clinic in Rochester Minnesota. We head out there for the first round of tests very soon.
 
How has it affected my daily life you may be wondering ?  I can no longer work. I had to move home because I am not allowed to be alone. I cannot take my service dog for a walk alone or him walk me haha.
Due to my memory lacking I had to take a break from college because I was un happy with the grades I was receiving knowing I could do better. Not being able to do vital things alone like cook, shower, sleep, and having driving ripped away from me. I struggled hard with that one I won’t lie. Almost a sense of loss of self because you lose your personal space, someone can just check up on you at any second and that is nice, it just gets old saying yes or no I am seizing.
 
The life path I had planned out for myself  has been set awry and it is now taking everything just to stay afloat on what has become my new normal.
Feeling like a burden to my family even though they make sure it is known that I am not. Breaking everything under the sun in the house from such violent seizing.
I have a horrible memory, I sleep to much for the average person, the seizures drain me and no dating life.
 
Being use to hospitals, and the needles and nurses and doctors and how they treat you, being just another number on today’s census report & not actually figuring anything out again just kind of stuck here in this spiraling chaos until it gets under control. We hope & pray for results from the Mayo Clinic.
 
Again thank you for reading this and for any contribution you may have made.