Diagnosed Again

Hi Everyone

I am new to this website and only found this evening.  My story is quite a long one.  In 2002 after a night out drinking at University I had my first seizure, twitching of the face and left shoulder - I almost laughed it off and thought I must have drunk far too much the night before.  Over the next 6 months, I was well and didnt have any problems, but then the year after I became really unwell - they started to occur in my sleep, just as Im dropping off or waking up in the morning as well as having them when I was awake.  It got to the point where I was unable to walk across a room wtihout having one so I went to A&E (Im in the UK) and was told by a physician that I had epilepsy (complex partial seizures).  I was started on lamactil and they stopped for about a year.  I dont think anything triggered them off again - possibly shift work (Im a nurse), but after a while I started having them again (just at night) - they grew worse and worse over the next few years, but I was concentrating ono my career and buying a new house etc and didnt want to address it - I suppose Ive always hoped that they would just go away.  I definately noticed a pattern though - worse during mentruation, after drinking alcohol, lack of sleep or disruption of my normal routines.

 About 2 years ago, I moved house and decided that the time had come to go and see a neurologist again - he listened to my symptoms (which after reading this webiste sound like EVERYONES complex partial) and said he believed them to be non-epileptic, I came off my medication and had some EEG monitoring.  One 20 minute base line one, one 30 minute sleep deprived one (didnt sleep) and finally 5 days of continuous ambulatory monitoring (had approxiamately 10-15 a night) - All of my EEGs came back normal.  I was asked to stay off my meds and referred to a sleep clinic to see if I had some sort of sleep disorder.  This was 6 months ago and during that time I have become more and more unwell.  (Also had MRI which was clear) Its also worth noting that I had meningitis as a child.

I have been unable to sleep for fitting all night every night.  I was promoted at work (going to work every day after no sleep) and am now a Sister on a specialist cardiac intensive care unit where we deal with critically ill patients everyday - it is a stressful and demanding job.  Looking back I have no idea how I turned up for work everyday.

Then at Christmas things really took a turn for the worse - I think I had moy first grand mal on christmas eve - all I remember is coming round hitting my head as I fell out of bed.  I believe I had another GM at my sisters flat (after drinking) and had been incontinent and bitten my tongue.  I remember none of it - just waking in the morning.  She reports me as "all limbs jerking in the night and being unable to rouse me, making choking noises".  This happened a couple of times, waking to find I had bitten my tongue and wet the bed - distressing at the age of 28!!!  I phoned my neurologist and was told to just wait for the sleep clinic appointment.

Whilst waiting for this appointment to come through a month ago, I had ANOTHER grand mal - lying next to my boyfirned at 3am.  I have no recollection of this  - All I remember is waking to find paramedics in my bedroom - my blood sugars had dropped to <1mmols (this has not occured since) - I had bitten a huge chunk out of my tongue.  I was confused and aggitated for hours afterwards.  I was admitted to hospital and put on another ambulatory EEG for 5 days (normal), having repeated blood surgars and prolactin levels (BM's normal and prolactin levels raised). My neurologist then decided that from the description of my sister and boyfirned and the damage done to my tongue, this was a grand mal. When I was discharged I was commenced on keppra 1gram.  I have since started on lamactil again with some improvements in symptoms, though am yet to reach my origional dosage.  I am off work now.

I have seen my neurolgist again today and feel better (having 4-5 a night).  He thinks I am having complex partial seizures (frontal lobe) and wants to send me either to an epilepsy centre for 6 weeks in London (I presume for more EEG monitoring - these seizures are very difficult to capture on EEG), or have an ICTAL SPECT scan.

I have told him that for a few months I need "a break" I want to go back to work and enjoy sleeping!  I am on the waiting list for this test and if he can find the "specific area of my brain" where the seizures are coming from I may be a candidate for surgery or vagal stimuation - Neither of which are appealing to me!

Anyway, thats my story.  Im exhausted, emotional and feel like Im on a rollercoaster and can see no light at the end of the tunnel.  I feel as though a can of worms has been opened and I have no control over my life.  I worked so hard to get my job and feel like Im wasting my time being off work.  Iam lucky in that I have an excellent supportive family, friends and boyfirned, though its difficult trying to explain my wierd and wonderful seizures to people that havent experienced them.

I just want to say that reading some of the notes on this website is like listening to myself and am definately going to be using this as a support network.  I hope that everyone keeps as well as they can.  I am a strong and determined person and know that if I can get the seizures under control I will thrive.  I am even training for a half marathon at the moment!

I hope to meet some like minded friends experiencing the same as me in the hope that we can support one another xxx