Managing and understanding my seizures unmedicated.

Hi there,

I am a 34 year old male living in South Australia and have been living with seizures now for around 4 years.

During this discussion I am going to point out some of my own personal observations that may turn out to have no relevance at all, or be in disagreeance with some peoples opinions/views. This is fine by me I only wish to explore this condition I have through discussion and debate on a forum where I can get some feedback from other people who suffer from seizure conditions.

My story - Around 4 years ago I was at a point in my life where I was quite lazy physically and had become quite grossly overweight. A close friend of mine passed away at age 30 from a heart attack. This prompted me to do something about my weight/lifestyle (better late than never). I went from being 154 Kilo's down to about 110 kilos in 6 weeks. My rule of thumb for this was not to go on some fad diet where you eat expensive designer foods or live on tofu forever, it was simply a matter of saying NO to things lie soft drink/fast food/dairy/wheat products and some other common sense when realizing that what you are about to eat is not good for you, then I would do about 3 minutes on the weights and instead of driving tot he local shops or whatever, I walked. Sorry for the long rant on weight loss but I'll get to the point.

It was when I started losing this weight, I had dropped about 20 KGs when my first seizure occurred. I know now that it was a complex partial/absent seizure but at the time just felt a bit dizzy, had a strong metallic and also wooden taste in my mouth and needed some time to gather myself. I put this down to either being exhausted from the workout or something to that effect. I noticed about 20 minutes after I had gathered myself somewhat, that I could taste the air so much better, I could smell things I had never smelled before and my hearing, when triggered by the right kind of sound would produce vivid images of memories I had completely "forgotten" about. I have experimented with psycho active drugs for pleasure like mushrooms/acid when I was in my teens, this felt somewhat similar to that but not as extreme and not with the compulsion to laugh uncontrollably. I passed it off and went on with life....

3 days later the same thing happened again. Then again and again every couple of days over the next few weeks. At this point I was a little concerned, but I had decided that it must just be a side effect of losing so much weight so fast, perhaps toxins built up in my fat cells were being released?? I had no real idea back then but I have always avoided the medical world when I can so my mind decided that this was its theory, and we are sticking to it!

Over the next few months things had changed a bit for me, I was now a lot fitter and healthier, more so than I had been in over 6 years. I was experiencing much fewer of these absent seizures and so was no longer concerned that it was a real problem anymore. Then BANG they started back up again. This time they were worse and lasted for what felt like a lot longer and recovery time was definitely a lot longer than before. I kept saying to my family and friends "it feels like something has changed" as in, something about how I felt inside my body/mind felt almost like....Not me, or at least not the "Me" I was.

I moved to Queensland with some friends a couple of months later, partial seizures were still happening 2-3 times a week but I was "managing" them (haha). It wasn't until my friends saw me have one of these partial seizures and after I "gathered myself" were both standing around me with terrified looks of concern on their faces that I realized that this was more than I had hoped to convince myself than it was. They both told me that I had just stopped mid sentence and got up and walked outside and stood against a pole. I then slid down it to the ground while breathing really deeply and chewing on my own mouth. I apparently got up and went and sat down again and resumed the conversation where I had left off and then got up again and repeated the whole seizure process in the exact same fashion as I had just done 5 minutes ago. It was after this that I came to and saw my friends faces.

After some extremely passive aggressive convincing that night, I went to the GP the next day.....I was referred to see a neurologist and prescribed Tegretol that day.

I went home with the prescription slip and googled "Tegretol side effects" after about4 different sites I came to one conclusion - HOLY WTF!?? You must be kidding me I thought, they want me to actually trade having some dizziness and sensory overload (which isn't as bad as it sounds) for side effects like depression, impotence, incontinence, kidney failure, liver disease, heart palpitations etc etc, I am sure a lot of you would be familiar with this kind of stuff in the world of anti-seizure medications.

I went and saw the Neuro and he suggested I take Epilum. Again, googled side effects on my phone while sitting there and read them aloud to him. After that I asked if he had any alternative ideas. He said no, that the best thing is to go through the list of meds and find one you like. I said catcha later mate, and went home to do some of my own research. Research that is not fueled by being marketed to by a pharmaceutical company, but rather in the best interests of the person I care about most, me. What I found is that the medical world just has no real clue what to do, there is no"cure" and 99% of the medications that are used, only work because they block sodium channels in the brain or stop another part of the brain from talking to the rest. At the cost of living a lifestyle where you always feel sick/dizzy and are bound to experience some very horrifying long term effects if you stay on it for too long. Risking things like depression/anxiety which in turn can lead to elevated seizure activity as a result anyway...The list is huge.

What I did notice though, is that the studies into medical cannabis were going on in different parts of the world and were showing incredible results. The only block being things like state laws etc. I decided I would keep that idea for another day if things got worse but for now I figured that exercise/good eating/good frame of mind were a good start and seemed to abate the seizures from 2-3 per week to once a week, sometimes even every 2 weeks.

I lived like this for about a year, I had surrendered my drivers license by this stage and was happy to walk or use public transport. The all of a sudden the absent seizures started getting alarmingly frequent again and after about 3 weeks of having 1-2 a day,  I woke up out in the backyard on the concrete with a really sore head and a busted face and feeling like I had just run 30 marathons without a warm up. This time I had my Mother, Brother and Sister (who is a registered nurse) standing around me telling me an ambulance was on the way etc and that I had just had a full tonic clonic seizure and had fitted for about 5 minutes.

I realize I have ranted on for a while here so I will try to wrap this up, I continued to have tonic clonic seizures from that point on, up to as many as 5 a week, sometimes 2-3 in one day. At the time I was also going through some pretty stressful family stuff which seemed to aggravate the seizures a lot more. At this point I decided I needed to be "medicated" so I tried them,I tried Tegretol, Epilum and Keppra. All 3 gave me horrible side effects and only the epilum did anything to ease the seizures. I though bugger it, I am going to skip the norm and go outside the box a bit. I went and got myself some cannabis butter from an associate (lol) and started medicating myself with it. I also kept some dried cannabis to roll into a smoke for when I would experience the pre-seizure signs and use it almost to the same effect an asthma patient would use a ventolin inhaler to prevent an asthma attack.

Since then I have maybe 1 absent seizure every 2 weeks and even then it is very mild and easily manageable as far as 90% of day to day tasks go. I still do not drive and am limited by the types of physical work I can do so I am not 100% free of life restrictions by any means. But  my point is, after 4 years of exploring this with an open mind and a hunger for knowledge/references/proof and above all, the truth, no matter how much I may have disagreed with it. I have come to realize that I would rather have a small seizure every now and then and have the effects of getting "high" from cannabis as a "side effect" of using it as a medication than going through a list of heavy pharma meds that have disgusting side effects that may or may not abate the seizures, but will definitely shorten my lifespan and overall quality of living.

I am not saying I know it all or that what I do will work for anyone else as well as it is for me, i realize some people have other factors to deal with in their health that may restrict them from being able to be as active as I am. But i have followed these few simple rules to help get control of my life again and I think that even if I was to somehow become "cured" of all seizures I would still follow these rules regardless as they are just great life habits.

1) Eat well. 3 meals a day at least. Start with a good breakfast that has a good balance of energy sources in it. It is the most important meal I have and never miss it, I used to struggle to eat breakfast in the mornings but after some willpower and forcing it down for a few days, I started waking up ravenous. My fav is a poached egg on whole meal toast with BUTTER not margarine! Margarine/spreads are literally 1 molecule off of being considered a plastic, it is not food and has no nutritional gain whatsoever. Avoid eating lots of dairy/breads. they don't digest easily and the body only needs a small amount of them each day. Keep fast food to a minimum, I still go to Maccas every now n then. Completely eliminating treats from your diet is pointless, we all indulge in some way, its who we are, I like to indulge these days on a nice steak with a good array of veggies and some gravy....mmmmmmm..gravy.....Ahem, so yea, eat healthy, its easier than you think and your body will love you, especially if you have seizures, you need to replace all that spent energy and have energy in reserve.

2) Stay hydrated. I have a glass of water by my bed at all times. When i consume alcohol (which isn't that often anymore really) I make sure I drink a glass of water every 2-3 drinks minimum. Stay away from soft drinks, if you really crave fizzy flavoured drink then get some soda water and cordial or juice and mix it up. Tastes great, is actually refreshing and hydrating and about a thousand times healthier than coke. Also soda water here is about 1/4 the price of coke per litre so that makes sense too. I also try to keep my caffeine intake down, not sure if it helps but you know....it cant hurt.

3) Take some time after waking up to let your mind wake up a bit, maybe some morning meditation or some of your favourite music. Whatever you can think of to help put you in a positive frame of mind for the day. I have found that feeling angry/confused/depressed/anxious made my seizures not only more frequent but more severe also. Find things that help you feel grounded. For me I like to do some gardening or wood carving or even just some regular treadmill housework like the dishes can make me feel "more in my body"

4) Cannabis - Heres where it may get awkward. For some you will agree with me other will not. Its fine, but I assure you that other than my seizure condition ,which it is helping me so well to manage, I am a very healthy person with a good memory and a high libido -.^

5) Acceptance - It took me a long time to accept the fact I was having seizures and that I couldn't control them by sheer will power or by hoping it would go away. I had to make changes in my life, I have had to adjust. My partner and our kids have had to re-adjust as have my friend and the rest of my family. It has not been easy, its not meant to be easy. Challenges like this come up in life and you can either learn and grow from them or you can let them kick you down and let yourself become a victim. The amount I have learned about myself, others, the human brain...the list goes on, all through wanting to understand my condition better. I have applied this gained knowledge and experience in so many other areas of my life now that one could almost say I was thankful to have had these seizures.

Anyway that's my rant over. I am going to write another thread a bit later about discussing the effect of sexual intercourse triggering seizures but i think this is enough for one post.

Cheers,

Russell