Feelings suck!

Lately I have been feeling really down and out. There is alot of hurt built up inside me right now. I'd rather not get into the main reason at the moment, but its mostly because of epilepsy.

I hate it! I feel like I have lost so much because of it. I have lost friends and independance. I cant drive, I cant take a bath while home alone. I'm afraid to do anything without my fiancee or someone who knows what to do if I have a seizure. Im scared to embarras myself in public.

I know that epilepsy shouldnt be an embarrasment. Its something that I cannot help. I cant just stop seizuring. If I could, I wouldnt have epilepsy. What embarrases me is the weird noises I make, the drool, the strange actions, the convulsing, the postictal state. Having people stare at you when your in a vulnerable state really bothers me. Before E, I was never vulnerable. I had no fear, I was never embarrased, because the things I did were on purpose, or by accident but essentially I had control over what I was doing. Now I dont.

I am hurting so bad inside. I want to do nothing but cry and hide in my room under the covers. I want to be me again. I want these damn seizures to stop. But I dont know how to make them stop, or at least slow down. I have no medical help behind me. One neuro said it was frontal lobe, but it was too difficult a case for him to handle as I was allergic to his drugs of choice. So he reffered me to another one who then said it was all in my head and I have a mental illness. He told me to see a psychiatrist. The psychiatrist then told me that i did not have any underlying mental illness that was present before the seizures *at this point I just have depression* and that I didnt need to see him as he didnt think this was a stress issue.

I am 22 years old. I want to start thinking about having kids soon, but I cannot bring myself to get pregnant without my seizures under control or a neurologists help.

Im so lost right now

Where do I go from here?

So I saw a psychatrist a while back.

We sat in his office and he asked why I was there. I told him I was having seizures and that my latest neuro was adamant that the seizures were not epileptic in origin, because my EEG was clear (I tried to remind him that EEGs are unreliable because they may not pick up seizures that develop in the frontal lobe or deep in the brain, plus they can have false positives or negatives) I told the psychiatrist that the neuro told me to move to the states to find help and majority of his answers were "I cant help you" or "I dont know".

The psychiatrist asked me what I thought they were. I told him I didnt know. I told him I didnt care what they were, as long as he can make them stop. I didnt care whether they were epileptic, psychogenic, diabetic or magic, just make them go away. I told him that I responded well to meds (except neurontin which made things worse) and that had to be a good sign. I told him that now that I am not taking meds I am scared for my life as I have a habit of going into respiratory arrest after seizures. He just stared at me blankly. He asked me some very basic questions and then concluded that I handle stress well, that I am in no need to be seeing him as he doesnt think I need a psychiatrist and that I should see another neuro. He was going to send a letter to my GP to say I was not needing any psychiatric help. (have yet to hear from my GP) The psych told me not to see him again.

I am now doctor-less, med-less and scared wit-less. I dont know what to do anymore. The seizures are getting worse, despite me trying to avoid things that will trigger them. I am depressed. I am pretty sure I have PTSD (post traumatic stress disorder) from my ordeal in the ICU as I still have nightmares where I wake up in a foreign place, cant see straight and start pulling tubes from my throat. (I dont have any concious memory of July 2010) Its been a year now and hospitals now terrify me.

Im trying to cope with being "alone" in the sense that it is only me fighting for my life. Doctors dont seem to want to care. Even for the tiny fact that I bring them a damn paycheque, they just dont want to deal with me. I am deemed a crazy female who cant handle stress. Regardless that I saw a shrink who said I am about as sane as one can get. I fully admit I used to be a cry baby. Now I have a "Fuck you" attitude. Nothing bugs me anymore except this. I have realized that all the other problems around me are minor to the seizures. That I would rather have alot more things that idiopathic seizures.

Nothing is cut and dry when if comes to seizures. So many variables, so many types of seizures, so many focal points, so many triggers, so many meds, so many side effects, so many issues. Yet they try to stuff you in a little mold labeled Epileptic and if you dont fit into it without causing a hassle or difficulty, then you must not be epileptic. Im not saying I want to be epileptic. I just want an answer so I can start getting better. I dont want them to find out whats wrong during an autopsy. I'm scared and im alone. Im frustrated and discouraged.

I think its sad that as someone who deals with seizures on a near daily basis, that I know more about the disorder, treatments, testing processes, possiblities and death rates than the people paid to have the job.

Just one of those days

I had so many seizures yesterday and sunday night, it was almost unreal. Aside from the pain all over my body and the shredded tongue, I would have thought I was dreaming it all. I stayed home from work yesterday, lyed in bed or on the floor, and slept. Its so draining its not even funny.

Think of your worst hangover you ever had. Now multiply that by 10. For those of you that dont drink, take the feeling of the most tired you ever felt and multiply that by 10. Thats what the after effects of a seizure feels like withour exaggerating. sometimes I am so tired I cant even lift my arms or  move my legs. I'm so sore I want to cry. Or I feel like barfing but dont want to because the acid will burn my poor wounded tongue. Its not fun and its not fair.

Some people seem to think that you can just suck it up, get dressed, hop on a bus and go to work. Most days I can. But sometimes I just can't. It really hurts and I am exhausted. Like I ran a marathon full speed in 4 minutes. My muscles quiver with exhaution. I once heard that astronauts' muscles will twitch and quiver for almost a full day after entering orbit because they are tense for so long on the way up. Thats what happens to people with seizures.

Not all seizures make me so tired. I can trooper through complex partials and simple partials no problem. I barely notice myoclonics or absence seizures, so no biggie there. Unless the myoclonic jerks are so frequent I cant write something or even pick up my drinking glass.

Its not something I would go on disability for. I have thought about it when it was really bad, but decided against it because there were plenty of things I could do from a computer desk or even from home. I am not permanently disabled, just selectively disabled. And its my brain that choses the days it wants off. It could be a special event or a holiday, a weekend or a funeral. It doesnt care what I have going on in my life.

So the next time you feel like opening your mouth to someone about missing work, or your birthday or sleeping through Christmas, dont. Because that person could be dealing with a very hard disorder or disease and hasnt told you. Or has told you and your just insensitive.

I  really wish there was a way to make people feel what its like to go through a week in my life with Epilepsy. Just once, and just for a week. I bet most of you couldnt handle my best weeks, let alone my worst

Living In Wonderland

I've taking a liking to blogging lately. It gives me a place where I can vent or get things out in the open that I just feel like sharing to the world. This blog inparticular will be my personal, daily life blog about what its like to go from being a normal young adult, to one that has seizures.




I chose the title of my blog because me having seizures, is alot like Alice falling down the rabbit hole into Wonderland. In fact, the author of Alice in Wonderland had Temporal Lobe Epilepsy (TLE) and used his seizure experiences as parts of the story. Many people think this is all drugs (eating the mushroom and the caterpillar smoking a hooka) but infact it was just ways that he could show people what a seizure looks or feels like. Sometimes you feel larger than everything around you, sometimes smaller. Uncontrollable crying fits, hallucinations, feelings of time skips or even feelings of fear. There are feelings of falling, or sudden dizzyness, as well as tunnel vision, having things feel familiar when they arent (deja vu) or having them feel unfamiliar when they are (jamais vu)




I have experienced all of the above and more. But its hard to talk about these things face to face because of the stigma attached to Epilepsy. Even within the health care community there is stigma that seizures are only caused by stress if you havent had them since childhood. That your crazy and its all in your head. And sadly the diagnosing tools that are used are unreliable, often giving false positives or false negatives. Even neurologists arent completely up to date and are utterly lacking any compassion as to what its like to sudden fall down that rabbit hole and have your life turned upside down.




This blog will be my diary of how things are going. My next post will be starting from square one so you can read the whole story. I am trying to put the peices together so that I can figure out where and why the seizures started. Hopefully it will give me a better insight to make them stop, and will stop my neurologist from blowing me off like I am nuts. I will also post statistics and facts and videos every now and then. Just so that those who read this and follow along are as educated about seizures as possible.




Take care everyone! By the end of this blogging experience I hope to have found my way out of Wonderland. :)