Long Needed Update

After not posting here for about six years it’s nearing time for me to throw out a cursory howdy to anybody who might be cruising by.  So, howdy.

I hate to say it but I have yet to be healed.  Epilepsy is still part of my life.  It isn’t all my life, but its still hanging around and doing it’s thing.  Blank spaces in time, periods of confusion, and emotional ups and downs that aren’t rooted in a depressive cycle are some of the little glitches that pop up to challenge me on a weekly basis.  Knowing what’s creating them gives me the power to keep them from turning me into an emotional basket case.  I’ve got Epilepsy, after 30 or 40 years of this stuff a guy oughta start getting used to it ‘eh?

I’ve had a few people contact me regarding the name of my blog (Epilepsy Sucks) and let me know that they’re using or are going to use the name in a blog or FaceBook page of their own.  So go ahead and be a follower if you need to be folks.  Don’t be at all creative in the pursuit of your cause.  I started using Epilepsy Sucks in a Delphi Forum I was running back in 1998, so I guess you could say I’ve been using it on the web for awhile.  LOL

Unfortunately I don’t link to other pages here.  I’m not here often enough to keep links fresh and you know how it is on the web, links die or change purpose often.  How often have you clicked a link and been redirected to a Web Hosting homepage because the original link was no more?  It’s not responsible of me to link to other pages if I’m not actively maintaining this site.

I’m still on Lamictal and Topamax, though the dosages have changed.  I just finished going through generic drug hell where my pharmacy decided to change their source for my generic Lamictal three times in four months, which put me through AED hell for almost six months due to all the different drug formulations.  It resulted in my complaining to my doctor and having him send my insurance company a letter asking that I be put back on name brand Lamictal and Topamax, which they begrudgingly agreed to.  Now I’m nearing the end of the sixth week of adjusting back to the name brand drugs which has been interesting too because they’re much stronger than the generics.

If you’ve been placed on generic AED’s and you’re experiencing side effects from them do yourself a favor and check into problems with your particular generic AED on the internet.  You might find that you’ll be able to return to name brand drugs  with the help of your doctor and have your insurance company agree to pay for them (like they should be paying for them anyway).  We shouldn’t have to be putting substandard medicines into our bodies just because they save our insurance companies money.

I’ve caused enough problems here for one day, probably enough for another few years.

 

 

The Value of Information

There is a misconception about people with epilepsy.  That is that we are so desperate to have our seizures stopped, that we will do anything, take any chance, submit to any medical procedure that a neurologist tells us has a chance of working.

We’ll stop taking our meds and suffer through a week or more of long term monitoring, submit to brain surgery with a 75-80% success rate, or continue taking an AED that doesn’t control our seizures but packs extra pounds on us month after month.  Vagil stimulators, special diets, and accusations of noncompliance every time our seizures get out of hand.  This is just a short list of what we’re sometimes exposed to in the course of treatment.

It’s important for us to know about these treatment options before we agree to them.  It’s better yet to know about them before the doctor suggests them so that we can let him know about our intentions on the spot.  Even better that we suggest treatments and let the doctor tell us why they are or aren’t good ideas for us.  We need to become our own advocates, the quality of our treatment will be improved when we do.

I have Temporal Lobe Epilepsy, my foci are in my r. temporal lobe, and every time I have to change neuro’s they offer brain surgery as the #1 option of treatment for me.  I always ask the same questions and their answers are always similar.  80% success rate, continue taking AED’s after surgery, and yes the 20% does mean that I might come out of the surgery worse off than I was when I went into it.

If I were having Grand Mal’s regularly, or even serious Complex Partials every other day, it would be worth considering surgery as an option.  As it is my meds have me down to a coulpe CP’s a week with more aura activity than I’ve ever tried to keep track of.  But, if I were to change neuros tomorrow, I’d still be offered the opportunity to take part in an 80/20 brain surgery session.

If possible include someone else, preferably a family member, in your research and your trips to the doctor.  Including the examination room.  Search the internet, send for pamphlets and product information sheets, read the small print at the end of any sales pitches you receive, the dangerous stuff is hidden there.  Above all, don’t believe everything you read.  Dig a little deeper on the web to either back a claim up or disprove it.

It sounds like a lot of work, but it’s not nearly as much work as going through unnecessary treatment when better options are available.

Do Something About Your Epilepsy

What can you do when you can’t do anything except wait for the next seizure to happen?  Sometimes you can’t do anything except buy into depression and fear.  Some people go the route of denial, and act as if nothings happened.  Sometimes that works, sometimes it ends up in tragedy.

Wrecking a car while seizing is not a good thing, I wear an impressive scar on my forehead to prove it.  But that was a long time ago, before I learned the value of listening to the neuro when he advised that I don’t swim, work on ladders, or drive until we were able to get a handle on my seizure activity again, and again, and again.

Another thing I learned was not to depend on my mind.  Every time we went to the doc he’d ask about my seizure activity and my emotional state.  Most of the time I could only answer with vague comments about how I’d still been having seizures and I’d been pretty down.  Like he didn’t already know that.

He needed to know that in addition to having grand mal seizures, I was occasionally feeling like my fingers were being inflated with air, and the puffiness moved right up my arms.  Or for some strange reason I’d feel kind of blue, the color blue, and be surprised when I looked at my hands and didn’t see blue fingers, or at least a blue aura around them.  Sometimes half my face would become icy cold, then in a few minutes it would pass.

It was time to listen to my doc again.  It was time for me to start writing this stuff down as soon as it happened.  It was the beginning of my involvement in being more than a bystander in the treatment of my condition.

If I hadn’t been writing this stuff down, my doc wouldn’t have known half of the seizure activity that I was having.  He wouldn’t have known about my emotional ups and downs, which were also seizure oriented.  I had no idea that the confusion I was experiencing had to do with complex partials until I documented it for him.

This is going to be lots harder for parents of children with epilepsy to use, but even with them, if you write down what you see, you’ll be better able to inform their doc about what they’ve been doing.  Our minds just aren’t that reliable in highly stressful situations.  The police take notes all the time, we have to learn to do the same.

Learning how to keep a journal was the best tool I ever learned to use when it came to helping my neuro manage my epilepsy, I wish I’d have picked it up sooner.

There’s more to write on this idea, it’s a rich vein that I shouldn’t turn away from yet.  I’ll get back to it the next time I write.

Welcome to My World

Welcome to my first entry in Epilepsy Sucks.  I know, the blog title is a bit crude, maybe even uncivilized, but that’s the way I feel about the condition I’ve had for the last 40 plus years.  If I were to dance around my feelings on the subject here in my very first entry, I wouldn’t feel like I was being honest with you, or with myself.

This first entry will be mostly about my history, starting with encephalitis at 3 years old which left me with lesions in my right temporal lobe, and the first seizures I had at 12-15 years old, straight through today.  It’s not really all that spectacular, so it won’t be long.

My epilepsy was highly episodic for most of my life.  I’ve been on uninterrupted AED’s (anti epilepsy drugs)  for 40 years, and have enjoyed a few long seizure free periods of a year or two each.  One seizure free period lasted just over six years.  But then my physical condition changed, and I came to with a badly chewed tongue and a fuzzy view of the ceiling in front of me.  When that happens after any long period without seizing the feelings of defeat, and hopelessness are crushing.

About ten years ago I was doing some contract work in a potato warehouse.  This was near the end of that six year seizure free period, and I was working on ladders near the ceiling, disturbing dust that had settled from the potatoes that were being brought in from storage.  The dust had various chemicals in it, chemicals to kill bugs and fungus that might ruin the spuds while they were in storage.  Well, it seems that the chemicals I was inhaling awakened a sleeping monster, because I began having Complex Partial Seizures a number of times every day, and my old enemy, the  Grand Mal, came back with a vengeance.  This period of seizure activity continued long enough to take our business and put me on disability.  In fact, it continues yet today.

After trying a number of meds that didn’t lessen my seizures, my neuro settled on the combination of Lamictal and Topamax, which have been working well for me for quite awhile now.  I haven’t experienced a Grand Mal in Years, but still have an occasional complex partial, and auras (simple partials) on an almost daily basis. It might seem like I left out about 30 years in there, but to tell the truth, life during that time was pretty normal, it was just interrupted by an occasional seizure.  Sometimes more seizures, sometimes less, but for me it was normal.

There’s a lot more to write here.