Yesterday I wanted to write but my brain was stuck in neutral. I can’t say that it has improved a whole lot now, but I’m going to try…
During my college years in particular and for many years thereafter, I suffered from a form of mild narcolepsy.
Mild, because at least I never found myself spontaneously actually asleep. Technically.
There were so many times, driving the thirty miles home after work, that I nearly drove off the road. Because I worked shifts, I seldom had much traffic to contend with, but it only takes a moment….
It was another of those things that I could not get an answer to. A brain scan suggested “scar tissue”, and I was asked if I had ever fallen on my head.
Well, not that I remembered.
The diagnosis of mild narcolepsy was given with no treatment offered.
It wasn’t there all the time, but I never knew when it would arrive. My head would suddenly feel like a ton weight and I would just long to put it down on a pillow and sleep.
Sitting in lectures was torture. I know a lot of people nod off when a voice drones on, but for me it was chronic and I missed lecture after lecture.
At work, there were times when I had to put my head down on my desk and there was a risk I could get fired for sleeping on the job.
Because I always seemed to feel cold, I would be wrapped up in a blanket and sometimes I had to find a bench to lie down. Somehow management never seemed to notice.
Possibly because I always got my work done.
But the worst was driving, because it was so dangerous.
When my parents went back to England, I had to drive them from St Petersburg to Miami Airport. It was a four-hour drive and it was a battle.
What an irresponsible thing to do, drive a car carrying two other people, while fighting the whole way to stay awake.
But I had no alternative and it could have been one of those “fog-free” days. After all, none of the doctors I consulted ever told me not to drive.
When I visited my aunt and uncle in Maine, the air journey being too complicated, I ended up driving 8 hours, back and forth to Long Island.
Madness.
One doctor suggested Dilantin, which was an epilepsy drug. I was never clear just how it was expected to help me and side-effects put me off it.
As deeply as I felt I wanted to sleep during the day, at night I could not get to sleep, adding to my fatigue!
This is something I haven’t thought of for quite some time.
For one thing, I seldom drive any distance these days.
But this morning, as I sat at the computer, there was that old thick fog-in-the-brain feeling, the temptation to just go and climb into bed.
Instead I decided to write about it.
Thinking back, I really wonder how I did not cause a serious accident while driving, or make a bad mistake at work.
But the frustrating thing about it is that I tried to get help and it never happened. Was it because I was not forceful enough in presenting my case?
All my life I suffered from digestive problems, at times quite badly and I sought help for this also, with no better result.
Am I really such a puzzle, or just unable to express myself?
Now I’m “old” to boot which I suspect reduces my credibility, as a matter of course. On top of which, I am “dependent” on oxycodone.
Perhaps I am too sensitive about the way people look at me when the subject of oxycodone comes up, but I always feel they regard me as a drug addict.
If I had to do it over, I would resist most medication.
The moment I arrived Stateside, my uncle wanted to feed me tranquilizers. I don’t know if he thought they would make me more cooperative, but I didn’t like having pills pushed at me.
Eventually, when I sought help for depression, it was deemed to be a “chemical deficiency” and I started the long road through the list of anti-depressants, one of which I am on to this day.
Truthfully, when I consulted a psychiatrist, I had very good reason to be depressed and I am not convinced medication was necessarily helpful.
So, I wonder, when the oxy is out of my system….do I try going off the anti-depressant? Do I dare?
If there is a purpose to this post, I am aiming it most particularly at young people and it would be to warn you to pay very careful attention to what medication any doctor suggests you take. Be sure you know what it will and won’t do and what the side-effects may be. And although I seem to have failed completely, you need to be forceful with your doctor. Make him/her listen to you and answer your questions. Don’t be intimidated because they are a doctor. You are their client. They are there to help you.
Oh boy. Sounds good when I read that back. So why can’t I do it?
I do relate to much of what you are describing, having never been diagnosed with narcolepsy, but finding myself in many situations over the years, just needing to close my eyes and lay down my head. Whether driving, or working in an office, or even when I was teaching, many times I had to pull into a restaurant/store parking lot, or go into the “ladies lounge,” wherever, just to close my eyes. What helped me the most was undergoing a “sleep study” and being diagnosed with sleep apnea. Apparently I was “almost” waking up hundreds of times each night. I’ve also gone up and down the list of antidepressants for many years, with various doctors deciding at times, that I had been on a particular one for long enough. But you are so right that we are clients of the medical profession and final decisions are ours to make. Finally, I thought once that I would just stop taking my antidepressant–big mistake. There can be serious issues in withdrawal. I do believe that there is a chemical element in the brain that the antidepressants help to balance. Anyway, as the saying goes, I feel your pain, and I do hope things get better for you, soon. Thank you so much for the daily pictures; they are something I look forward to each day.
Thank you, Barbara!
I’m sorry that you have had to go through this. For years I would come down with bronchitis once or twice a year. One year I would get a cold, get better, get a cold…. I went to my doctor and told her I was tired of this. She ran blood tests. Turns out I had had chronic mononucleosis (Epstein Barr virus) for years. I went to see a holistic practitioner with my doctor’s blessing. I became much better.
Research is finding that many things are related to gut health. Maybe this is something to explore?
Many blessings.
I’ve always thought that there is probably a simple answer. If there was anything seriously wrong, I should have departed the planet long ago. It’s a matter of finding a practitioner you are comfortable with and have faith in. Perhaps there is one here for me!
Sorry to hear that you have not gotten right treatment from the doctors. But don´t give up, you are so brave when telling your story here. And your photos are so great! Thank you 🙂 and take care!