Epilepsy Update 17 October 2016

Yesterday was a trip...

A real bad trip...

I woke up with a devastating migraine. Migraines are one of the most common accompanying effects of Epilepsy. I moved around the place in dazed confusion and the emotional storm of the past few days still raging unabated within me, trying to get ready for church, breaking into tears over and over again. My soul seemed lost somewhere in a deep, black hole and I felt like I simply couldn't go on. Concentration was impossible. Everything seemed too hard for me. Life itself seemed a burden too heavy for me to bear. The thought of going to work the next day- or ever again for that matter- was just too much to bear. I longed with all my heart and soul to ride far out into the desert and never come back. All the while I struggled to remember that terrible, torturous, merciless emotional storms are simply a normal part of the bad phases and that it would pass, sooner or later. That knowledge is purely theoretical when you're stuck in the middle or one of those storms however. That is the utmost of weakness, hopelessness, and depression. You feel like you just cannot go on. Even laying down and closing your eyes takes too much energy- energy you do not have. 

At some point my fiancee came into the kitchen while I was struggling to make a sandwich, tears flowing down my face. She took me in her arms and held me for a while, telling me how brave I was to keep working with such an illness, to stay as active as I was, to keep doing my best. 

Normally I would have stayed home from church feeling as bad as I was but I had agreed to play the main role in a sketch and there was to be a meeting after church to plan the filming of the sketch, and I had promised to be there. I have always been a man of my word and do not like the idea of changing that now, Epilepsy or not. Now an epileptic as bad off as I am actually shouldn't be agreeing to play roles in sketches or promising to be places at certain times but I always promise all kinds of things to all kinds of people, and quite often end up basically "crawling there on all fours", dazed and confused and emotionally exhausted- yet too proud to admit my weakness and trying to put on a good show. 

So I got ready as best I could, got on my bike and rode to church. It didn't take long for the complex partial seizures to start and they came in wave after wave for the rest of the day to compliment the migraine. I didn't last more than five or ten minutes in the sanctuary before I had to struggle out into the foyer, eyes fixed on the floor ahead of me with as much concentration as I could muster. There I stayed and waited the service out. I got that meeting behind me as fast as I could and went back home to bed. Today, Monday, I called in sick to work. 

The seizures aren't the real problem, not since the medication keeps them short and relatively light. The migraines aren't the biggest problem either since they're usually not that monstrous either. It's the emotional storms during the bad phases that are the real problem. They are so unbelievably terrible that I can hardly describe how terrible they are. Sometimes I can steel myself against them, hunker down and wait them out if I see them coming but all to often they catch me by surprise and pull me down before I know what's happening, and I have no chance against them. They hijack me and take me on a ride of terror...

To do it right I should have gotten a sick slip for the three weeks I was taking antibiotics as well as ten days afterwards. To do it right I should get a sick slip for two weeks every time my neurologist changes my medication. To do it right I should get a sick slip every time I get the flu- or rather at the first indication that the flu is going around. To do it right I should get a sick slip every time I have an especially bad migraine. But I can't do that! How long do you think my employer would continue to employ me if I did what I should do? I really don't have any other choice but to keep on going for as long as I can and hope I make it through to full retirement. 

I'm just in one of the bad phases at the moment. Too many things came all at once: change in medication, borrelirose, antibiotics, intestinal flu. It will pass sooner or later. Things will go back to normal. Normal is manageable. Two or three short, relatively light CPS every day and a few not too bad migraines per week. Normal has no emotional storms. I think I could live with anything as long as those emotional storms stay far, far away from me...

Epilepsy Update 15 October 2016

I don't know why I number the updates instead of simply dating them. Trying to figure out which number comes next is strenuous...

So I mentioned that things had began to get worse again in my last entry and that my next appointment with my neurologist was coming up, and that I was afraid I'd try and make things sound better than they were, as I usually do. Well, I was a good boy this time and told him the truth. First off he scolded me for not taking my emergency medication on the 31st of July when I had that breakthrough cluster. I should have taken it the second time I went to the floor, the third time at the very latest. Now the damage is irreversible and the new medication, the Topirimat, had to be increased 50 mg per day. That new dose has to be taken in the morning. My medication has gotten so complicated now that I had to buy a new medication dispenser with a separate box for each day which has separate compartments for morning, noon, evening and night. 

 What has become of those light and easy days after my last grand mal seizure? That first year, year and a half where I took one pill in the morning and one in the evening, only experienced a couple of light blings per day and my head was clear and I could think normally almost all of the time? My heart was light. I had no difficulty whatsoever working and I enjoyed being around people. I had energy and felt zest for life. 

Epilepsy? No big deal!

It went on like that for what, a year? A year and a half? I don't remember exactly how long it was anymore. It seems like an eternity ago. How many epileptic's YouTube vlogs have I followed who have experienced the very same thing? They're all positive at the beginning- for about a year or so, full of energy, saying they're not going to let it get them down, they're going to remain active and enjoy life. Then suddenly there aren't any new videos for a while! Then they finally do post one or two new ones a long time later- a couple of years or so later- and they're just like I am now: beaten down, whipped, struggling to get through each and every day, fighting depression, longing to just lay down in someone's arms and be weak for a while on the one hand and so ashamed at being so weak on the other hand that they try not to let show just how badly they really are doing. 

In the end the shame usually wins and you put on the best face you can with other people- and cry when you're alone...

So back to the present. Dr. Vollhardt raised the dosage. The hell on earth of a change in medication began. Then I discovered a huge red blotch on my leg a few days later and went to the doctor. It was borreliose, meaning I had to take antibiotics for three weeks. Unfortunately they don't mix well with Epilepsy medications and there's simply nothing you can do about it but grit your teeth and suffer through it. I don't even know where to begin describing  the details of what I went through. Suffice it to say that it was hell on earth- like one never-ending complex partial seizure or something. Absolutely no idea whatsoever what was going on  around me at any time! Not able to formulate even one single thought. Waves of heavy seizures every day, day after day. I have no idea how I managed to go to work each day and can't tell you much of what I did at work. I remember a couple sudden moments of clarity where I found myself riding my bike in heavy traffic, for example, on my way to a house call or something, and realizing that I didn't really know how I'd gotten there and hadn't really been aware of the traffic and that my life was in real danger. But then I was gone again... 

I finally started getting used to the antibiotics toward the end of the three weeks and then it was time to stop taking the antibiotics, beginning last Tuesday. Guess what? The withdrawal from those blasted things is almost as bad as taking them was...

Philosophers have been searching for the purpose of life for thousands of years but have never found it. They would have if they had suffered from Epilepsy. If you have Epilepsy the purpose of life is to get through this one day. There is no past. There is no future. There is only today. All you can think of when you wake up in the morning is surviving that day. Your eyes open and you prepare yourself to withstand the emotional storm that already begins to beat against you, telling you that all is hopeless. You tell yourself that the anxiety and hopelessness that grips you with the opening of your eyes is only an illusion and that you shouldn't believe it. You get up and get ready for work with 3/4 of your energy going toward just staying calm against the emotional storm raging inside you. At the same time your brain is immersed in oil and you can't think more than 2-3 minutes ahead- the world starts spinning in circles if you even try and think any further than that. You do your best to be still inside and go one simple step at a time. Shave. Brush teeth. Shower. Make sandwiches. Pack backpack. Dress. Don't forget keys. (Oh how I wish this day was over) Your goal is simply to survive that day. You don't know how many seizures you'll have that day or when they'll come but that's actually the least of your worries. Thanks to the neurologist the seizures are short. It's the rest of the story that destroys your life. Sometimes the seizures start right away, but usually they begin later in the morning. Occasionally they even wait till the afternoon. The only time seizures are really bad are when you have clusters because they make you very, very tired and screw your brain up even more. Often they leave you with a headache. 

You actually want to stay home behind closed doors all the time because being out among people is very, very strenuous and difficult- sometimes more and sometimes less depending on what kind of phase you're in. It's hard to follow what's going on and what people are saying and to respond properly and sometimes you forget what they said while you're responding if you're in a particularly bad phase, and then they think you weren't listening to them and aren't interested in them. Then you have people who talk too much and the world starts spinning and you begin to feel panic and have to concentrate  on staying calm and then they ask a question and you have no idea what they were saying because you were concentrating on not panicking. Sometimes they become offended. 

You hate it when people ask you how you're doing- unless it happens to be one of those occasional 1-2 day good phases which come along every couple of months- because otherwise you would always have to say that you're suffering and you can't always go around always telling everybody that you're doing badly all of the time- even if you are always doing badly all of the time. Nobody really wants to hear that but will feel like they have to act like they care if you tell them the truth. They all have their own lives and their own problems and are not responsible for yours. So you put on the best face you can and tell them you're fine when they ask. Then you cry when you get a quiet moment alone. You try not to burden anyone. You try and deal with it yourself.