Well it has been an interesting ten days. I caught a sinus cold and if you have epilepsy you know this sucks. The pressure that my head was experiencing was so horrible. Then the fever and chills came. The are many things that can cause a seizure and fever is a big one.
When you have that much pressure in your head it makes the ability to think almost impossible. Your focus is making sure that your temp stays low and rest. Do you have any idea how spending ten days without trying to think goes? This was the major set back in finishing up this page. I am still trying to come to terms with the fact I have limitations. The next big step is to continue on with life despite the long list of things you are not allowed to do anymore.
Like I said before this is my personal story . So the stories will come as my health permits. Trying to start a blog with cognitive brain impairment is very frustrating. I will have a brilliant thought and poof its gone. So if I ramble on or miss something that is why. Never give up hope and keep fighting!
A year ago I suffered a 30 min seizure during a stay in the hospital. I was in a VEEG seizure unit coming off my last anti convulsion medication. It was determined that I have a form of epilepsy that does not respond to epilepsy medications. I was having multiple partial and complex partial seizures each day. At least once a month I would have a non aura tonic clonic seizure. After finding out that there was no medication that would help with my seizures I turned to cannabis.
Now a year later the seizures have reduced. It has been over 150 days since my last tonic clonic (grand mal) seizure. I do battle the effects of cognitive brain damage still. The partial seizures I am able to treat with CBD & THC. The difference in my personality has changed dramatically since I stopped the pills. The side effects that I experienced with every single medication was mind blowing. My weight dropped 50 lbs and all I did was sleep. I felt like a medicated zombie. Every time they started a new medication the seizures would go crazy. When you have no aura with a tonic clonic seizure it can be life threating. I am not allowed to drive which is a no brainer. I am also not allowed to leave my place by myself, hold my grandson, have a bath or shower, cook, wash dishes or walk for longer than 15 mins. The reason behind all these restrictions is for my personal safety. I do have exercise induced seizures so if I want to go to the mall I need a wheelchair.
The main thing that bothers me the most is cognitive brain damage. It is something that my neurologists and doctors don’t seem to like to talk about. I have done extensive research regarding seizures and cognitive brain impairment. After having a status epilepticus seizure (a seizure lasting more than 5 mins) my cognitive abilities have been greatly affected. You still look normal but you feel like your going insane. According to several medical papers it states that in adults cognitive impairment will increase with each seizure. Memory is a huge issue with me both long term and short term. Daily tasks take longer to do or may start to cause partial seizures. When I go shopping with my husband it is like information overload. I try to think what we need or what I would like and the thoughts are not there. Next thing you know partial seizure activity starts. Before last year I could sit down and write a blog in no time. Now just trying to think how to spell a word you know and can not remember. Yes this does happen to all of us. Now imagine it happens at lest 50 times a day.
With my blog I will take you along for the ride. I am not a doctor and these are my own personal opinions. I will take you through my experiences so far with doctors and licensed producers. When you have a life threating condition and you are told there are no medications that will help you. What would you do?