30 years for diagnosis

 

Hello all!  Yesterday I was diagnosed with epilepsy and I'm thrilled.  Sound crazy? I'm not.  

Nearly thirty years ago (after the birth of my daughter) I began having what I called "spells."  Everyone chalked up my spells to a mental health problem.  Apart from a hormone issue after birth, I had some post-partum depression, but absolutely NO psych history.  I was sent for counseling...for two years!  News flash: you can't counsel away seizures!

I kept telling anyone who would listen that something was wrong.  Something was happening, physically, to my body and no one would listen.  

Miraculously, after about 8 months the "spells" stopped.  I didn't have another spell for 25 years.  In my mid-40s I had a "spell" and I said to myself:  wow, that was wierd, that was just like after Erin was born.

The spells were unpleasant but not horrible.  I didn't have them nearly as often as I did before.  Maybe a cluster of 5-8 over a handful of days about every month.  My "spells" varied in intensity but most were what I referred to as "medium bad."    

They are kind of hard to describe but they start with a sense of deja vu.  Also, i would usually have a sense (I called it feeling spelly) when I was in a cluster of activity.  I could also tell when my cluster of "spells" was over.  I would tell my husband:  "I'm not feeling spelly anymore."  

Finally, about two years ago, I had a pretty bad one at work.  I decided I should seek medical attention.  Who does one see for spells?  Well, they chalked it up to crazy in the past, so I booked & waited two months to get an appt. with a Psychiatrist.  After my first hour-long session, the doctor told me that I didn't need to come back (big surprise).  She told me she thought I was having seizures.  I just about fell out of my chair!  Never in a million years would I have thought that!  Then I found this site and began to read so many stories that sounded like me.  I became convinced I was, indeed, having seizures.  

I booked an appt with a neurologist.  I described my events to the neurologist including my fearfulness of having these "spells" because I found them so unpleasant.  She was very dismissive and basically told me she didn't think I was having seizures. She also said fear was not associated with seizures.  BullS**T!  Anyway, she too (with no psych history in nearly 50 years of life) wanted to chalk it up to crazy.  

Maybe because I'm an RN and she wanted to cover her ass, she told me to schedule an EEG.  I couldn't fgure out how they could possibly catch a 30 second event that only occured a handful of days a month, but what ever.  Sooo, I waited until I was feeling spelly and I called and they scheduled my EEG 6 weeks later!  Gee thanks!

Naturally, no events occured during a brief eeg.  Once again the doctor told me she didn't think I was having seizures, but I could persue it with three days inpatient if I really wanted to.  Hint hint:  You are not having seizures but if you want the PITA of a three day hospitalization go ahead dummy.  I'm in the medical field, I know what is happening.  

Fed up with the whole thing, I dropped it.  I let it go on for two years.  My husband and daughter (who is a doctor) kept encouraging me to go in but I kept putting it off.  I am out of the country a lot, I have a job, I have no time to spend three days in a hospital especially since they just think I'm crazy.  Well they persisted and finally, I agreed that I would go in during the next cluster if I was in the states.  That was this Wednesday.

I woke up feeling like I might have had a spell, but I wasn't sure.  Later that moring I definately had one so off to the hopsital I go.  I told anyone who would listen to me: "The doctor said if I had a spell, I wouldn't have to stay three days, I could go home."  As I waited in the waiting room, I had a spell.  I was pretty bummed because it was unlikely I would have more than three spells in a day.  After they hooked up my EEG, GLORY BE!  I had spell! I was very excited because I thought that meant I could go!  No such luck. At a minimum, I was staying overnight.  It was awful.  Being in a hospital is awful!  It's like they remove your dignity at the door.

By the next morning, I was fit to be tied.  The good news, I had several spells during my sleep deprived EEG.  By the next morning, I told the nurse that if this was all for nothing, I would be really disappointed and she said:  "Oh, I don't think it was for nothing."  That was her way of telling my somethng happened on my EEG.  She was the only person (besides the Psychiatrist) who believed it was real. About an hour later, the doctor walks in and says:  "you have epilepsy."

My experince with healthcare has been dismal.  

If I call and tell you I think I have a fractured leg, don't send me to strength training & weight lifting!  I HAVE A BROKEN LEG!

If I call and tell you my entire leg is blue/cold/pulseless, and I'm flying to Mexico tomorrow, don't tell me I don't need to be seen!  I HAVE A MASSIVE BLOOD CLOT!

If I tell you I'm having seizures, don't tell me I'm crazy.  I HAVE EPILEPSY!

I have zero history of malingering.  Believe me, I've treated malingerers, I am NOT a malingerer.  Yet it took thirty years to finally put a name to my "spells."  SEIZURES!

I took my first dose of Lamictal this morning.  I have hope!  For anyone out there with a similar story, be persistent!