Feb - June 2011 History leading up to diagnosis

2011
Feb 6th:
When I went to bed I knew that I had drank a few too many glasses of wine and would suffer in the morning.  Not sure why I did it especially as it was a Sunday and I had work and school to think of.  I didn't think, just drank. Not sure exactly what time it happened by I woke suddenly with a huge cramp in my leg and what I thought at the time as my tongue stuck down the back of my throat choking me.  I got out of bed unable to breathe and starting  hitting myself on the back to get my tongue out.  I have no idea how long I did this for until the black closed in on me.  It was literally as if dark was closing in on me to a point.  As it happened I thought, this is it.  I am dying.

Some time later, again I have no idea of the time that passed, I came to and went back to bed.  Too scared to sleep I sat up. Being an avid googler even then, I read up about people having too much to drink, falling asleep on their back and choking on their tongue. I vowed never to drink again and thought not much more about it.  The next few nights were pretty uncomfortable as I tried to sleep with my tongue sticking out.

I have never been so scared.  I really though that I was dying as everything faded to black.

March 10th
It happened again.  No alcohol. This time the sensation was more as if my throat was literally locking shut. How could this happen? Googled more stuff, read about sleep apnea etc. I then spoke with a good friend and she suggested going to an ENT and recommended one. Very nice Doc.  I described my symptoms to him and he listened  and then told me that he didn't believe it was sleep apnea (cannot believe now the relief I felt to hear that).  He looked in the back of my throat and said he saw that my larynx looked as if somebody had poured battery acid on it.  It was so red and my lingual tonsils were inflamed.  Diagnosis: LPR causing laryngospasm as the acid splashed against my larynx. The evidence was there.  Started regimen of PPIs and no eating after 7pm, I was happy to have found a solution so easily and quickly.

April 17th
It happened again.  Really scared.  So scared in fact that I asked my husband Karl to take me to the hospital in the middle of the night.  The bad thing is that Karl and I have always been on different schedules as far as sleep goes.  I am an early to bed early to rise and he is exactly the  opposite.  At this point he had never seen this happen but could tell I was really scared, so he was worried and we bundled the children in the car went to the local hospital.

We parked outside the ER entrance and the security guard watched the sleeping children while a wheel chair was found.  I told Karl to go home and put the children back to bed. ENT told them to admit me for which I was so grateful.  I was so scared and felt that being in the hospital was going to keep me safe.  I was transferred to a larger hospital and admitted to the cardiac ward. Strapped up to heart monitors, oxygen etc. Given steroids to reduce inflammation and IV antibiotics. I had done everything the doc advised, my throat had cleared up. Why was this still happening? The ENT doctor was also concerned and  ordered MRI of brain and throat, plus barium swallow. The next day he told me that their were "small white matter lesions" found on the MRI images of my brain and he was referring me to a neurologist. Didn't have a clue what that meant. The neurologist then ordered a series of other tests including a spinal tap. Nothing came up in the spinal tap and other blood work.  By this time I had spent 4 nights in the hospital and the neurologist said other tests such as EEGs and sleep studies should be done as an out patient.

Passed EEG day time test, plus night time EEG and full sleep study with flying colors. Nobody really knew what to do with me.  Could be multiple sclerosis but this was not really a symptom of MS.  Was advised to continue PPIs etc, given .5mg of clonazepam to help me sleep as the fear was getting high by this point. Arranged follow up MRI for July, 3 months away.

June 5th

It happened again.  We were on vacation in beautiful San Diego with good friends.  Had spent a beautiful relaxing day on the beach watching the children enjoy their friends and the freedom of a quiet Mission Beach in early June.  It was a magical day.  Then I woke up again with my larynx closed shut unable to breathe.  Luckily this time Karl was sleeping next to me and I managed to wake him somehow.  Obviously with my larynx slammed shut I cannot call out so it involved punching his arm or something.  This time Karl shared the experience.  He could see my fear and that I could not breathe.  He held me in his arms trying to keep me awake but of course it all faded to black. He called 911 and dashed to the beach house next door to wake our friends. Our children were in safe hands as Karl rode in the front of the ambulance. The staff were nice but couldn't see what to do with me so I was discharged the next afternoon.  The beach vacation continued as normal for the children but for Karl and I it was tinged with fear. He later said that he thought I was dying in his arms.


June and July ish: went down some rabbit holes with endoscopy and talk of fundoplication surgery but my gut (ha ha) told me that this was not it.