AND AFTER ALL THE TESTS … Marilyn Armstrong

After Garry and I left our car with the valet at UMass Memorial, I looked at Garry and commented: “I should have just gone to an eye doctor.”

Considering all the testing and checkups, you’d think I’d have a diagnosis. Nope. I know just what I knew when this round of medical visits began. This was one of the times when two things happened at the same time. I wrongly assumed the two events were connected.

Back again

It’s a natural reaction. I had my little seizure, or what seemed like one and my vision went all funky at the same time. One plus one is expected to equal two, except when it remains one and one and they don’t add up.

Seizures? Not exactly.

I have narcolepsy. It’s one of the many reasons I don’t want to drive. One time, a few years ago I fell asleep while driving. The next thing I knew, I had an incident with a tree. I don’t know how far I drove (asleep) before I hit the oak. I also knocked off my rearview mirror somewhere en route to the big tree and no one ever found it.

It’s possible I drove for a mile or two (there was no traffic) before I drifted to the side of the road and conjoined with nature.

It turns out that narcolepsy can produce those weird sort of seizures I had and one of the ways you can tell it was not a real seizure is that it leaves nothing behind. You aren’t groggy or muddle-brained. It’s literally as if nothing happened. I remember once in the middle of a home barbecue, I collapsed in the hallway. On further checking, I had fallen asleep and just fell in a heap on the stairwell. Everyone thought it was funny. I didn’t think it was all that funny, but I didn’t know I had narcolepsy.

It can be a difficult problem to diagnose. My shrink finally nailed it.

Ever since I hit that tree, I’ve been wary of driving. It’s why I always have a stash of amphetamines with me. It’s no big deal if I fall asleep at home — as long as I don’t hit my head or face on something on my way down. Which I have also done. In that case, I was walking, said I felt funny, but apparently kept walking (but not awake) into a door frame. That time I also woke up screaming but with good reason. I split my face open. It required some interesting stitching of nose and lips … and a missed interview for a job I wanted.

I also was a serious sleepwalker for many years. I don’t think I still sleepwalk because it’s too hard to get out of bed … but when things go really missing and I eventually find them in some strange place, I suspect I did it while asleep. My granddaughter also sleepwalks. Is it genetic?

It never crossed my mind that all of these events were part of the things narcolepsy does, but that’s what they’re telling me.

The narcolepsy is not new. I have spent many hours sleeping in my car by the side of the road because I knew I was going under, only to be woken up by the cops telling me it’s illegal to sleep by the side of the road.

I would point out that this is exactly what they tell you to do if you feel you cannot continue to drive. It’s in all the books on safe driving. Nonetheless, they immediately tell me I have to move along. Have they missed the part where I say I was too tired to keep driving and had to stop or I was going to have an accident?

Stupid is as stupid does.

So that’s the story of the seizures. They aren’t seizures. They are my narcolepsy acting up, usually on a day when I not taken amphetamines. They don’t make the problem go away, but for at least four or five hours, they keep me reasonably alert.

Finally, the strangest part of narcolepsy is that you may have symptoms of its approach (intense sleepiness), or you may be hit by waves of dizziness. Or a sudden upset stomach. Or you are fine and fall over. Asleep.

It’s not a disease, though it is a condition and while the amphetamines help for short periods when I absolutely must be awake, it doesn’t cure anything.

Nothing cures it probably because they aren’t entirely sure what causes it. They have theories, most of which seem to involve sleep apnea except I don’t have sleep apnea. I do have exactly the right kind of insomnia, though. The kind where I fall asleep directly into a dream, then wake up every two hours until finally, a nightmare makes me decide sleeping isn’t a good idea and anyway, the dogs are barking.

What about my eyes?

It’s probably (drumroll) … cataracts. My right eye is relatively clear, but my left eye is cloudy.

I’m 72. Garry was treated for cataracts when he was barely 60 and my father had cataracts years before me. Actually, everyone gets cataracts sooner or later. Dogs, cats, and horses, too. I’m just a bit late, but by age 75, everyone either has cataracts or has had the surgery. It is THE most widely performed surgery in the world. They expect to perform around 30 million cataract surgeries next year. That’s a lot of surgeries.

You get old? You get cataracts. You can also get cataracts without getting old. Some babies are born with them.

There are no eyedrops of any other form of correction for cataracts other than surgery. You get them repaired or you don’t. If you don’t, eventually you can’t see.

So my next doctor is the ophthalmologist. It would appear that I may not need new glasses. I may need new eyes. Which sounds like a good idea. Garry and Tom both have had the surgery and they LOVE their new eyes. Finally — NO glasses.

Wrapping Up: Coincidence is not a sign from the Universe

Just because two things happen at the same time doesn’t mean they have anything to do with each other. We all read too many mystery novels where everything is a clue. This is particularly important when you are dealing with physical symptoms. Simultaneous doesn’t mean causative.

And this is also what’s wrong with having so many specialists who only look at your wrists or fingers or hips, but not your spine, brain, or eyes. I think most of us need someone who will look at all the stuff going on who can then tweeze the pieces apart and figure out what is really wrong.

Dr. House, come back! I need you!

23 thoughts on “AND AFTER ALL THE TESTS … Marilyn Armstrong

  1. Can we make a deal? You give me a tiny dose of your narcolepsy and I hand over some of my insomnia?! Sounds good, doesn’t it?!
    Although my insomnia is a changeling…. When I have FAR too much on my plate I hardly sleep at all, right now, although I’ve many unneeeded items on my plate, I’m sort of OK (OK for me is when I read and the book falls several times on my face before I realise I could possibly sleep now!).
    As always, you look at every item of worthwhile correspondance with great insight and depth. I love anything by Einstein and those quotes are great.
    About coincidence: We have a brilliant word in the German language: Zufall (not always used in the same as coincidence but made me think of this my fave!) – in German you can say – Zufall (happenstance maybe?) is: Es fällt einem etwas zu – something is falling your way – which you cannot explain so well in any other language I know. I’m fascinated by the power of words, the impact of language and you are a great example to show me WHY I like your posts so much.


    • Insomnia IS a changeling. Narcolepsy has its own version of insomnia. It’s one of those sleep-wake cycle problems. There are a lot of them and I don’t think they’ve done much research on it. They just assume everything is sleep apnea or drugs.


  2. Hope all goes well Spike! 🙂

    Narcolepsy/loss of/gaps in consciousness… curiosities of the human brain functioning. Possibly a chemical imbalance or insufficiency meaning the brain cannot generate the usual level of firing across synapses that it does to maintain our alpha and beta wave states and we slip back into theta and or delta – those associated with sleep/deep sleep. Stimulatoion by amphetamines is obviously one preference of Doctors to cope with the issue, but you may be able to train your brain also?


    • It is often a chemical imbalance (I forget the name of the chemical, but you could look it up) — but it isn’t ONLY that. It’s a package deal including a weird sleep pattern — waking every couple of hours and sinking into REM sleep immediately rather than eventually. Sleepwalking. Sleep talking. Nightmares, especially in the early morning. Restless legs and arms. And sometimes, a freaky reaction to ordinary over-the-counter medications. It definitely IS an erratic sleep-wake pattern, but it doesn’t seem to be caused by anything. But I’m betting they haven’t done much testing, either.


  3. My vision has stayed nearly the same for the last three years–thankfully, no new glasses to pay for yet; but, I am starting to develop a cataract in right eye… Oh, the glories of the aging process. As for falling asleep while driving–that has happened to me twice, thankfully with no dire consequences. This is nothing new–have pulled off the road many times to nap during long road trips over the years. Narcolepsy–think I’ve got it! 🙂 Take good care of you!


    • I think a LOT more people have narcolepsy than doctors think, but they don’t check for it. They assume everything else from drugs and drink to obesity or staying up late to read. Every EXCEPT narcolepsy.

      Cataracts at our age is normal. But hey, when you get your new eyes? You can really SEE which is GREAT. I know a lot of people, including Garry and Tom, who’ve had the surgery and they love the results. I’m actually looking forward to it 😀


  4. I’ve never known anyone with narcolepsy before, but I can quite imagine why you avoid driving. I would too. Poor you. And I hope the eye problem gets sorted out soon. As they say, ‘it never rains, but it pours’. I agree that a holistic approach is far more appropriate than looking at all the individual issues, because often there’s something perfectly treatable underlying everything. I go to see a herbalist and that’s how they work, and I’ve been successfully treated without the need for quacks at all. Take care of yourself, Marilyn, you have a lot to put up with just now. 🙂


    • The cataract surgery is no big deal. Not that it isn’t technically complicated, but it is so routine that its success rate is enormous, like 96% over tens of millions of surgeries. The narcolepsy was there as a diagnosed condition for about 15 years. Undiagnosed since I was a kid. I simply didn’t understand that it could do more than put me to sleep at inappropriate times (oh the embarrassing stories I could tell). Actual narcolepsy is considered rare. I suspect it’s rare because doctors don’t look for it and as a result, don’t find it.

      It’s easier to blame it on something else. ANYTHING else. These days, EVERYONE has sleep apnea … except this is one of those “is the apnea because of the narcolepsy or vice versa?”

      So when you fall asleep at every meeting, in every class, are reading a book and you head falls onto the desk and you break a tooth (when you are 10?) — everyone assumes you stayed up all night partying, are taking drugs, are fat and lazy, or just bored. My brother had it too. I think it’s why both of us had to keep actively busy. Kaity doesn’t keep busy and she’s always asleep or about to fall asleep. I really have to talk to her about this. I bet she’d find it interesting. It does sort of run in families.

      Liked by 1 person

      • I’m sure you’re right about doctors not finding it because they don’t look for it. That would figure. But it sounds as though it can be hereditary. You’re spot on about blaming it on something else though.

        My mum had cataract surgery, so at least that’s something they can sort out easily enough. Good luck with it all. 🙂


  5. When my vision started getting blurry, I thought maybe I had a brain tumor. Didn’t want to know that, of course, so I ignored it. Eventually, I did go to the eye doctor and found I merely had an eye infection caused by …. cataracts. Antibiotic ointment and eyedrops, and now everything is fine. According to my eye doctor, my cataracts “aren’t ripe enough” for surgery. Good thing ’cause I don’t think I could face that surgery.

    As for the narcolepsy, would it help if you told the cops that you had that condition? Maybe they could escort you to somewhere you could park safely and legally until you felt better?


    • And I found out that something I knew I about got worse. They said that the fact that my eyes were “coming and going” and settled down to a basic “I can’t see.” Which was a good sign because now, they could pretty well tell me “Yuppers. Cataracts.” Which is such a normal thing at my age, it relieved me of a ton of worry. And I didn’t realize the narcolepsy could play me like that. I hadn’t really gotten past the “falls asleep at strange times especially while driving” thing. I didn’t know about the rest.

      Liked by 1 person

  6. I have come to believe that doctors know a lot about a little and a little about a lot. Five specialists still cannot tell my daughter what has caused her blindness, and now, with her knees aching, the specialist in that area says he has no idea why. These conclusions occur, of course, after many tests. So much for the age of technology and its claims to ferret out all the medical secrets.


    • Sometimes, you need a very particular specialist and in a way, it’s just as well I started with neurology because once they realized there were TWO things happening, everything fell into place. You just need that ONE really good specialist.


  7. That was a lot of rigamarole to find out that it was something you already knew you had and that apparently there is not much to be done for the narcolepsy. At least the cataracts are not a huge problem, except paying for the surgery I suppose.

    Liked by 1 person

    • Ironically, the SURGERY for cataracts is fully covered. What I can’t afford, are eyeglasses. They cost REAL money. I’m hoping I get new eyes. It’s so much cheaper than glasses! Also, I had no idea the narcolepsy had so many entertaining variations. I think I will have to start taking the medication all the time and not mess around so much with taking it, not taking it, then taking only if I feel I might need it. The problem is if you take it ALL the time, it stops working as well and the only alternative medication makes my heart try to explode (did that for more than a year and it raised my blood pressure to scary levels). So not taking it for a while keeps you from developing immunity to that dose.

      But I’m still only taking half the dose I’m assigned, so maybe it’s time for me to give in and up the amount a bit.

      Liked by 3 people

      • My cataract surgery was covered but I had to pay extra to get the corrective lenses. Now I don’t need glasses to drive. However closeup, I need cheaters (2.5) which I buy by the dozen at Dollarama.


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