Penelope's story

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When I was diagnosed with Narcolepsy/Cataplexy/Hypnogogic Hallucinations, there was little known about it, in fact there where only a few lines written in a medical text book.

From what I was told this condition was originally thought to have been brought about by a great fear, was also known to appear in families (my grandmother & my mother’s sister exhibited symptoms)

 

At age 13 I underwent bone operations on both knees, primarily because of pains in my knees during the night and slight knock-knees. My parents where told it was a simple operation, 3 silver staples hammered in to the inner knees to correct the growth. (Found out later was totally unnecessary, and the surgeon wasn’t allowed to practice anymore) after the operation that was done in 1958 I wasn’t allowed to have any pain killers (considered very bad for children, even aspirin!) I must have cried constantly, i was in hospital nearly 3 months, (I do have a faint recollection of using sleep to escape the pain) I had to learn to bend my legs again and walk, painful physio for a year. After a year the staples where to be removed, however, nobody told me that this operation would not be nearly as painful as the first.  The night before the operation I was laying in the dark terrified of the next days operation, I must have had a full blown sleep paralysis attack, I felt something or someone hovering over the top of me, I couldn’t move, the next recollection I have is being on the floor away from the bed looking back at myself in the bed, to me this was an Out Of Body experience! If I think about that moment I am still O.O.B in my memory. I continued to leave my body after coming home from hospital,

Every night, I had pains in my temples too, and would hold my head, about the time Narcolepsy appeared. Hallucinating with the five senses, I would hear the loudest screaming noise in my head, felt like a knife was being run inside my head, I would have the most excruciating pains in my stomach, and sometimes feel like a needle was being jabbed into my sciatica nerve, I would be in agony. Of course in the morning nothing wrong in those areas. From the age of 14 (puberty) when I left my body I felt an entity with me at night only, I was terrified of this, and feel it was my fear that kept it attached to me. Sorry wont go into any more details about what was happening. At around 43 though while seeing a psychologist who actually believed me, she took me to a rescue group who took it off of me.

 

When I left school at 15 I lost every job I ever had through falling asleep, the stigma was enormous, lazy was my name. Nights filled with fear, flying around my room, out the window up into the stars, unable most times to wake myself up in the morning.

Then yadda yadda life happened, at age 20 I immigrated to Australia. Struggle with this condition the entire time, abusive husband, (would burn me with cigarettes to try to keep me awake) this emotionally fearful time was the condition at its worst. I could even walk along street asleep!!

We returned to UK. At the age of 23 I happened to tell a GP about myself, he remembered reading about this condition and sent me to Brain Hospital in London, they tested and diagnosed me. At last I knew I couldn’t help what was happening to me, they gave me meds which I hated, made me feel I was on a knifes edge, lessening the dose made all the difference. I felt normal, could work without loosing the job.

 

We returned to live in Australia in the early 60’s because of the medication I was given I was given a letter of introduction to a Professor of Neurology at St George Teaching Hospital Kogarah NSW Professor Don Pryor, at that time there where only 2 of us in NSW diagnosed with this.

So little was known even about meds that they left it to me to to judge how many I needed to stay awake, I was taking 28 tabs per day 4 lots of 7 tabs! I also became pregnant with my youngest son, he was monitored closely at birth, but was fine healthy baby, I think they said bat the time my placenta did a wonderful job, as did my liver to filter the drug.

When my son was around 18 months I was withdrawing in middle of night, went back into hospital and was taken off meds cold turkey. They monitored me, lots of student doctors came to ask questions, its a bit hazy now, which tabs they tried me on, I think imipramine for the side effects on the eyes, lots of others. Nothing worked, I was sleeping involuntary, couldn’t laugh without falling down, struggle all the time, marriage broke up, just me and 2 boys trying to work to keep us. I stayed off of meds for a long time. Until I heard about Epinephrine I think I could buy at chemist, so for a while I felt normal again. Then Epinephrine was taken out of pharmacy as truck drivers where using excessively and crashing. I went back to Professor Pryor told him my story and he referred me to Professor Grunstein at Royal Prince Alfred sleep clinic. Under him I was put back on original meds, sleep studies every year, then around beginning of nighties I was allowed to just go to my local GP for prescriptions, I am now 71 and am on the max dose 4 tabs twice a day. Some days I struggle around 3 so I take a NoDoz (caffeine) tab to help me through, along with a nanna nap.

 

I can still be affected by all the things that make normal people sleepy such as:

Eating

Travel

Heat

I can still fall asleep in a nano second and not know it till I come back.

 

I am a vegetarian, am gluten/grain/dairy free as am intolerant to these, sugar is my enemy.

Have been a spiritual seeker for 25 years, am happy I believe our true nature is happy, it’s the mind that gets in the way for most people.

I would never think if only I had never had this! Because I have, And am me.

I have never driven, with involuntary sleep attacks I would have killed someone and myself if I had.

I don’t eat before sleep it makes me so sluggish next day, I eat around small around 5pm. I believe this is crucial to how i feel next day.

Naps are lifesavers; I can be up and at em with as little as a 4min nap. If I get to a toilet will put 5 mins alarm on Iphone feel like im refreshed after.

So, if anyone has questions, I am happy to answer best I can.

Hope this may be of help to some, we are all different in a very nice way.