WHEN THEY CANCEL YOUR MEDICATIONS – Marilyn Armstrong

I really wanted to somehow fit this into one of the many prompts going around, but nothing fit. Sorry.


Twice during the past two weeks, medication on which I depend — and could afford — have been discontinued. The loss of Demerol wasn’t a big surprise. It’s an old medication and not many people use it anymore. It was one of the few opioid-type medications I could take. Anything based on morphine makes me sick. Some of them make me VERY sick and cause hallucinations. Once, Dilaudid stopped my breathing and they had to come in and get me breathing again.

But Demerol is not morphine-based, so I could use it.

It didn’t work terribly well. To be fair, it was weak compared to other opioid medications, but my body tolerated it and wasn’t addicted to it. It has been increasingly difficult to get for a while. There was only one company producing it and sometime over the past few months, they just stopped distributing it anywhere. No pharmacy has any. Not even the hospital.

Then, today, the pharmacy called to tell me that Adderall was no longer available, either. That surprised me. A lot of people depend on it for a bunch of different reasons. Children with ADD. Adults with narcolepsy or exhaustion due to constant time changes at work and those with uncontrollable apnea.

And people like me who can’t drive without medication because I suffer from intense road hypnosis. It’s uncontrollable. I can’t tell you how many times I’ve had to pull off the road and sleep only to be awakened by a policeman telling me to move on. Mind you, that’s what I’m legally required to do if I’m unable to drive. It says so in your “learning to drive” manual … but the police don’t seem to get it.

In any case, pulling off the road is not always a viable alternative. I’ve had at least one serious accident because I went unconscious at the wheel. Lucky me, I live here and there wasn’t any traffic so I’m alive to tell the tale. I don’t even know when I went unconscious. Apparently. the car continued to roll forward for some miles before I veered into a tree. Messed up the car. I was afraid to tell the cops what happened because they would have pulled my license on the spot. Narcoleptics — not surprisingly — are prohibited from driving. But I was still working at that point and if I couldn’t drive, I would be in big trouble.

That’s when my doctors started giving me “keep awake” medicine. First, it was something called Provigil, then Nuvigil. Both drove my blood pressure sky high and I’m not sure those two medications didn’t have something to do with my later problems with my heart. Without Adderall, which is relatively benign, those are the only two drugs left … and taking either one of them would kill me. Which means — I can’t drive. At all. While I don’t drive often, I like to know I can if I must. It’s not like I can grab a taxi. There are no taxis here. No buses. No trains. No nothing.

I spent the entire day trying to find some kind of herbal thing that would help. To some degree, Gingko Biloba and Ginseng can help a little, but they don’t help everyone and aren’t dependable. I ordered some Gingko and the theory that it can’t hurt and maybe it will help.

If you are an herbalist and have suggestions, please be in touch! I can use all the help I can get.

I think I’ve found a medication that deals with the pain. At least it did last night and it did it so well, I have to admit it is a major improvement over the Demerol I was taking.

Nothing is going to keep me awake. Once I start to go under, I can open the windows and have the snow and ice coming in. I can literally hit myself in the head repeatedly. It won’t help. I will still become unconscious very quickly. I’m also both a sleep talker and a sleepwalker. It’s all related.

I will also fall asleep multiple times during the day and not even know I’ve been asleep until I realize the show on TV is different. Or the people I was with have gone home. Once I collapsed and fell asleep on the stairs (Cataplexy). I just folded up and was gone.

Why are these medication disappearing?

Because they are cheap. The companies who make it aren’t making a big enough profit. I’m betting these medications will eventually show up again but with new names and a far higher price tag.

So that was MY day. How was yours?



Categories: Health, Marilyn Armstrong, medication, Photography, sleep

Tags: , , , , , ,

31 replies

  1. Thank you for the insight into what one of our relatives has to go through.

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  2. I have always had trouble staying awake during the day if I had to sit still for more than fifteen minutes listening to a speech, or driving. I would wake up when my passenger would scream or the tires ran off the pavement. Never caused me to have a wreck but some close calls. Driving at night was ok. For safety tried to tune my trips so I drove at night. Enjoyed driving all night

    Good luck with your meds. Not sure what will happen with our nation’s health care, but a lot of people are very unhappy about the way it works now. And a lot of people do without.

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    • I did without for the past two days. I basically slept all day today. I finally got out of bed and passed out on the sofa. I’m hoping when I’m able to get in touch with the doctor, we can fix this. My son takes Ritalin and apparently they are still making that, at least. Yes, this stuff runs in families. Notoriously.

      I also do better at night. Not driving because I have trouble with the shine on the roads. Near-sighted and glasses aren’t great on the roads at night, especially in the rain.

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  3. No real solutions to offer but a ton of empathy. I recently had a very minor bout with diverticulitis (first and hopefully, only time)…which they automatically treat with antibiotics, most of which I am allergic to.
    I tried to tell them.
    5 different antibiotics and 2 anti nausea meds (also allergic) later, I ended up in the ER in kidney failure from all the dehydration from…well, you can guess.
    Then, to treat that they gave me stuff that caused such serious constipation, I was back in the ER again with a hugely impacted bowel. (ER Doc said “baseball size”.)
    My PCP, who was gone during this series of events, did something wonderful. She wrote out a short letter, explaining my sensitivities. (Most standard medical professionals do not call what I have “allergic” because there are no rashes, throat closings, etc.) This letter follows me everywhere I go now for medical treatment…like the equivalent of a med alert bracelet.
    She is an NP, by the way, my only choice from now on.

    I know there are no answers for you in my story, but I do wish I lived closer.
    I can DRIVE, and would, for you!!

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  4. The state of health care and health insurance is pitiful. Hope your doctors can come up with some solution.

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  5. Dilaudid is one of the things I can take without feeling all dopey.

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    • They just loaded me up on it and finally, I stopped breathing. I’m really super-sensitive to any kind of narcotic. I can take some, but many others make me very ill — and the thing is, this isn’t all that unusual. A LOT of people are hyper-sensitive to narcotics and hospitals don’t LISTEN. Even Beth Israel, which was pretty good about everything else, had me so doped up on Fentanyl I was hallucinating that fanged creatures were attacking me. Good thing I knew they were hallucinations, but they were very unpleasant. Until I finally got a doctor to listen to me and take me OFF it — and put me on Demerol — I was SO sick.

      That whole “not breathing” thing was also not a lot of fun … and it was because they weren’t listening to me. My blood pressure was up over the moon and I told them I was sick and they needed to NOT give me those drugs. They thought I was crazy, so they called the head shrink. He told them to TAKE ME OFF THE NARCOTICS AND DON’T WAKE HER UP EVERY HALF HOUR. He actually put a sign on my door. I was SO grateful.

      Liked by 1 person

  6. My day hasn’t begun yet. I am still working out how to get to the station parking to bring my son to the train in time

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  7. I’m sorry but I have no words of wisdom and no knowledge about what you can do. It is all very perplexing.
    Leslie

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  8. Have you tried cannabis? When I had terrible back pain that nothing helped, Yolanda recommended I try cannabis and it worked like a charm.

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    • Yes, I did and no it didn’t. Actually, I wrote a post about it that’s up tomorrow. The Tramadol really helped a lot, so maybe there’s one probably solved — at least until they take Tramadol off the market. I don’t know what I’m going to do about the narcolepsy, though. If they take away the only drugs that are safe for me, there’s nothing else.

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  9. I wish I had the answer for you. Perhaps the Mayo Clinic might. My friend was slowly dying under doctors’ care in Las Vegas and applied to and was accepted to the Clinic where they saved her life and have her on medications that work. I don’t know what kind of health plan you have, but that might be an option for help.

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  10. That’s really scary Marilyn.

    Like

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