Tracey - posted on 12/02/2010 ( 3 moms have responded )
We’ve reached December 2010 and I am finally now beginning to hope I may have reached a turning point in this journey with epilepsy. I’m always aware anything can happen, but I must admit everything considered, most days I feel pretty darn good lately. I will turn 45 years old on December 17th and I am hopeful I can make it to December 28th – this will mean the first year that I have gone ONE YEAR FREE OF TONIC CLONIC SEIZURES since I first started having seizures when I was 29 years old. I still get auras once in awhile and have the odd “foggy day” or days where I don’t feel really great. Also I am still, always, affected by barometric pressure and can always tell when there is unsettled weather brewing. I get pressure headaches and I feel sick instantly until the weather settles. Although this has never triggered a seizure in my case, depending on the intensity of the storm it can be extremely uncomfortable at times. And according to my husband, it’s only benefit is, “I’m more accurate than the weatherman” – hmmm, now that’s funny; maybe I could find some work?
Since I began having seizures, it’s been non- stop auras, small seizures, big seizures, foggy mind syndrome (my dizzy dayz), headaches, hazy/blank memory problems, and so on. I began having uncontrolled seizures in June of 1995, over 15 years ago. And in 1999 my intractable seizures started happening at night when I was sleeping, causing much worry for everyone in the house. Not to mention, the lack of sleep I was causing everyone. By 2001 I had tried several medications and things weren’t getting any better. Brain surgery had been ruled out as an option, and the doctor had suggested on more than one occasion “let’s try adding a third medication”. Well by that point I had had enough. I had always been able to consider myself of “sound mind”, but now I was often having difficulty thinking straight; and to be honest the whole situation was literally driving me crazy. The doctor said to us – well it could be the seizures or it could be the medication causing some of these side effects. But wait a minute – he just said “let’s add more drugs”.
Now I’m not going to sit here and pretend to know everything, because I don’t. But I knew I could think straight enough to know that, if I was already having trouble co- coordinating and thinking properly, then how was it that adding more medication was going to be good for me? I was scared. And I knew I wasn’t a doctor. But I felt like I was at a road block and it really made no difference which direction I went. For over 2 years I made no further changes. In the mean time, I continued taking my medication along with seeing a naturopath - I dabbled a little with herbal medication and got some help with cleansing, being careful not to flush all my medication; which could cause my body to go into status. I had used a lot of the natural methods periodically off and on from the start and it always seemed to help. Unfortunately depending on what you’re purchasing, it can also be very draining on the pocket book. Finally, my husband and I made a decision – we knew that nobody cared about my life more than me and my family. Based on that and all the information we had to go on, I gradually lowered my anti seizure medication. I started this approximately 6 years ago. I got down to one medication and eventually a lower dose of that medication. Everything was done very slowly; over about a 1 ½ year span. This way we could monitor the changes in my seizure patterns and hopefully prevent any life threatening situations. Sometimes I would have a really bad seizure/s or once in awhile I would have a milder one – if there is such a thing with the tonic clonic seizures. I guess what I mean by this is I could tell that there were times when my body wasn’t going through as much – I wasn’t chewing the inside of my mouth and tongue, I wasn’t putting my nails through my hands, sometimes I could walk instead of needing escorting or being carried to the washroom after my seizures. Sometimes I was recovering faster, feeling better; a lot less fatigued, I was more alert, and having fewer relapses. Gradually over the last 4 years or so my seizures have been changing – coming less often and less severe, then back with a vengeance until they found a more even ground. Then over the last couple of years they have gradually eased off, definitely not as severe most of the time - I noticed I didn’t always require oxygen now or feel pains in my heart afterwards.
A couple of years ago I could tell I was starting to feel better more regularly; remembering more often. Even though I was still having seizures at that time, my mind was beginning to feel much clearer than it had in a long time. By making the choice to work our way backwards and wait and allow my body time to adjust to the massive trauma it’s been through, we seem to be finding success after much trial and error. My body is now responding more positively than ever in 15 years. And I haven’t changed my routine in over 4 years now.
Seizures can start for many different reasons, but sometimes getting them to stop can be tricky and at times even impossible. The initial standard treatment available for individuals with seizures is to try medication first; so typically we tried medications. Even though my doctor suspected I was one of the rare cases where medication usually does little or nothing to improve seizure control, he couldn’t know for sure. And if I might have a positive response to medication, then it made sense to try. But, at the same time, we were warned that it may be difficult to find a drug to control my seizures. As well, we were told I would likely never gain total control of my seizures due to my type of epilepsy being caused from a brain mass. So I always had a little voice in my mind telling me “regardless of my desperation - be careful of how I use the medication”.
Always remember to look at all your options. And remember, in some cases, sometimes
“Less Means A Whole Lot More”!
Administrator, Epilepsy Awareness 2009
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