The Importance Of Understanding A Doctor’s Instructions

I called my doctor’s office yesterday and asked the nurse if she’d ask the doctor a question.

I’m currently taking Gabapentin for trigeminal neuralgia. But when the symptoms go away, I stop taking it.

So I told her that my friend Laura takes it every day for nerve pain. And would it possibly help me to take it on a regular basis for my nerve pain. (Neck, wrists, hands, ankle.)

Calling The Nurse Later On:

Later I talked to the nurse again. And she said: “The doctor said you’re already supposed to be taking Gabapentin every day.”

I was confused. I told her that I thought it was only when I was having symptoms of trigeminal neuralgia.

She said no, that wasn’t what the doctor meant or how it was prescribed.

Well, I’m quite literal as you know. And I had not understood this. I’ve been suffering with this nerve pain since January 2018 on a near constant basis.

I have other medications that I’m only to take when I have symptoms. So I guess I thought Gabapentin was to be taken the same way.

It Wasn’t Clear To Me:

I said to the nurse: “Oh. I didn’t get that.”

So yesterday I took 100 mg of Gabapentin three times a day, as noted on the bottle, and the nerve pain did let up some.

I was shocked. Might this be somewhat of a game changer?

Now what it did not do was take the trigeminal neuralgia pain away. Usually I only have that on one side of my face on and off. But yesterday it pulsed in my right temple all day and all night.

I had to bunch a small pillow up next to my head so I wouldn’t be laying right on it, because that made it worse.

Hopefully that will let up in a few days.

Aging & Complaining:

Here I am, the typical aging woman, complaining about aches and pains. I know. It gets old hearing or reading about it.

But I just wanted to mention that it is absolutely and vitally necessary to make sure you’re clear about a doctor’s instructions.

Because I might have had less pain if we had been clear with one another. I went to doctor’s appointments on a regular basis and we somehow never got this figured out between us.

The Ambiguity Of Instructions:

Instructions are often hard for me. Always have been. Because there seems to be no gray areas in my thinking. It’s either black or it’s white.

I had trouble in school with this problem and it’s been that way my whole adult life.

But I would think someone would have noticed that I rarely fill that prescription.

When they’d ask me at the pharmacy if I wanted the Gabapentin filled, I’d say no. And tell them I only took it when I had symptoms of trigeminal neuralgia.

So everyone was on the wrong page. Mainly me.

If Laura hadn’t been talking about taking it for nerve pain, I would never have thought to ask my doctor about mine. And it’s taken me months of talking to Laura on the phone to put two and two together.

Gabapentin helps her nerve pain. So might it help mine?

Heavens, the things I miss. I promise not to even mention the word pain tomorrow. I will write about a totally different topic. Possibly decorating I think.

Charlie’s Vetmedin:

On a different note having to do with medication, I cannot find the Vetmedin for Charlie. The vet doesn’t have it and no one I’ve found online who sells dog medication has it either.

I was told it is made in one place and they just run out toward the end of the year.

There are only about 4 or 5 more pills in the bottle and he takes one and a half pills per day. Starting to panic here.

If the vet can’t get it they will have to give him something else. And nothing works like Vetmedin. That’s why the manufacturer runs out. Almost everyone who has a dog with congestive heart failure buys this medication. Because it truly is a game changer.

So why don’t they just make it in larger quantities I wonder? It’s expensive and they could be making even more money with this drug.

Note: My doctor managed to get double the size I need of the Vetmedin medication for Charlie. I’ll go get that and just cut it up with my pill cutter.

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32 Comments

  1. I must ask…how did you get that beautiful ivy to cascade on one side? Do you trim the runners? How do you keep it full in the middle?

    1. This plant spent the summer outside. It became more lush and full out there. I repotted it and brought it in. It already looked like this so I didn’t do a thing!

  2. Years back, I was given Lyrica for terrible leg and foot nerve pain (pins & needles). Kept me awake constantly. Was not able to sleep nights. So, that was the end of Lyrica for me. Also, with knee issues, another doctor prescribed the Gabapentin meds. No relief at all. Made me worse. Especially thought process. Everything seemed backwards to my memory. I completely disliked this drug. Reading these various stories, I’m glad (both) meds work well for some people. Not myself though. Always in pain 24-7. Best I can do is take Motrin all day. Awful 😢 way to live a life.

  3. Brenda, I was put on Gabapentin by my Rheumatologist for extreme nerve pain in my foot for dealing with a nerve damaged during surgery. That surgery was done repair ligaments that had been damaged too many times that they were no longer working. Even on a very large dose, it wasn’t helping significantly. So after months on it, she (rheumy) pulled out a much stronger drug called Lyrica. It was like a magic bullet! My family practitioner was horrified I’d been put on it because of its strength and the reasons she uses it. She also participates on a health team that cares for people who are dying. Lyrica is used for these people to help the extreme pain caused by their cancer to help free them from the pain, in conjunction with their pain meds. At the end of a cancer patient’s life, the pain is often intractable. The problem is, both Gabapentin and Lyrica have a side effect of making it difficult to remember new things. If you read about them, it’s because they can stop the formation of new neural pathways in the brain from forming. For the pain cycle, they break the neural pathway of pain messages. I had noticed I’d become forgetful on Gabapentin but chalked it up to having to end my career due to disability and not having developed a new routine to function with my new disabled lifestyle and the ongoing pain. (So hard to think with extreme pain all the time.) When I started on Lyrica, the pain was gone and I soon noticed how I seemed to be increasingly ‘stoopider’. I could tell my husband and friends noticed it too by the way they looked at me when I fumbled for words or ‘forgot’ things I had been reminded many times. So I knew I had to stop taking it. The good news? I had been on it long enough that the cessation of the pain signals had tricked my brain into no longer expecting them to arrive. Apparently, in some cases, if you have been in pain for a long time, your brain becomes trained to expect those regular pain messages coming in all the time, and will continue to read/react as if there is pain even though the pain actually stopped happening at the source! These types of meds stop the ‘fake’ and even real messages but sometimes at the cost of a new side effect, no new neural pathways for memory. So keep an eye out for any new and possibly developing side effects. As I’m aging, I need all the brain power I’ve got!

  4. I have trigeminal neuralgia so I feel for you. Nothing touches mine when it flares. It is the worst pain I’ve had and I have a lot of things wrong with me. Good luck to you. I hope you get relief.

  5. Yeah for Charlie👍It’s so difficult to find a doctor who understands you. Good luck on ur meds. Love ur blog. Makes me feel normal!!!!!!!

  6. Dear Brenda- it is very difficult to remember all information after a visit with a doctor- especially when not feeling your best.If you are alone at the appointment- record the meeting with your phone – you can listen to the information at home. Amazing what can be missed during these visits.It happens to most of us.

  7. Glad you got your medication issue straightened out. Sometimes it can be very confusing, it’s not just you. Last time I had to have a medication, the doctor told me one way of using it and the label said something completely different! I always read both the prescription label and the insert when I get a new medication. So I had to call the doctor’s office and see which one I was supposed to follow – her instructions or the one on the label. Turned out, it was HER instructions. I’m surprised they didn’t print that on the label.

    Have you tried 1-800-PETMEDS for Charlie’s medication?

      1. Brenda, try Valley Vet online. I just looked for Vetmedin (which I used for my pup for years as well). They seem to have it in stock. Fingers crossed!

  8. Canadapharmacy.com currently has Vetmedin in stock. Their prices are in line with what I pay @ Wal-Mart Pet-Rx but shipping charges and delivery time not so good. I have a 2 month supply on hand but if I can get a prescription from the vet when Capo has his bi-yearly visit next month I’ll set up an account with them to use as a backup supplier. When Covid first began I was critical of those who hoarded toilet paper, wipes, etc. and here I am doing whatever it takes to “hoard”” Vetmedin.

    1. Well, yeah. We have to take care of our babies! I’ll check into this. Because the vet can only give me one month of the larger dosage. They told me they only get a few from the company every month themselves.

  9. So glad you got your medication straightened out. Poor little Charlie, I have a 5 pound Chihuahua who has cushings. She takes a compounded drug and I start to panic when her meds are late. She has never run out but has come close. It is even more important that Charlie takes his on time. We have dealt with congestive heart disease before and know the fear that comes with it. Cutting the pills should work well for you.

    1. They told me that when they cut the 5 mg in half, it’s fine. But when they try to cut that in half, which would be his evening dosage, it falls apart. I said “Well at least he will get his meds even if some is wasted.” Gotta do what you gotta do.

  10. I go with my husband to his MD appointments because he has some hearing loss and I can pick up on some things he misses. But even with both of us there, we didn’t catch a detail about the dosage for his high blood pressure medicine. The correct information was on the bottle and we still didn’t catch on. Fortunately, he goes to that doctor every six months and didn’t go a really long time with that misunderstanding. Now, we are even more careful about asking questions and taking notes. Also, his doctors all have websites where we can go to check on things and ask questions. If your doctor has a website, sign up so you can ask questions that way also. Try not to dwell on the mistake and try to move forward knowing you now have more information. Take care!

  11. Brenda, maybe you could think about asking one of your daughters to accompany you to future doctor appointments. A third party can listen more objectively than a patient who is focused-and maybe overwhelmed-with everything going on during an appointment

    1. Doctor’s offices won’t let anyone accompany you into your appointments now because of COVID – unless you need physical assistance.

  12. It is so important that you understand taking a newly prescribed RX. I have to say I think your doctor dropped the ball on this. Even though she said to take it three times a day and it was prescribed on the bottle like that she should have followed up with you to see how it was working after giving this to you new. Doctors always should have a patient follow up after starting a new drug. This is not just you not understanding. As a nurse I cannot stress this enough with people starting new medications make sure your doctor has you follow up after a certain amount of time to make sure the medication is working. If she would have done that then you would have been corrected right away on how you were to take it. Just glad you now know you have to take it as prescribed to get relief. My mom takes that to help her sleep at night it is also good for people that have a hard time sleeping beside nerve pain. I hope after you take this as prescribed it will start to help you.

    1. You must have better doctors than where I live! Husband had to start multiple new prescriptions 18 months ago due to a medical condition he’d chosen to ignore for years. Not one doctor’s office called to follow up!

  13. I have Multiple Sclerosis and was prescribed medication for my nerve pain and it is to be taken daily. Just curious what the instructions on the prescription bottle says. If it says take one tablet 3x a day, meaning daily. If it says ‘as needed’ then that would mean only when having nerve pain. I believe the medication has an accumulative effect which is why you take it daily.

  14. I’m glad you were able to get the medication issue straightened out and hopefully it will help with your nerve pain, fingers crossed. Manufacturers of drugs often intentionally keep supplies short in order to keep their prices high – which is awful but that’s our capitalist system based on “supply and demand (and greed).” I did a quick search just for links/information on vetmedin in Canada and there are vendors who are listed as selling it – lots of them. You can order online and have the medication mailed to you, assuming it’s available. Maybe they have the same supply issues that the U.S. has, but worthwhile looking into. Meanwhile, at least you have some supply from your vet that you can use, fingers crossed you can find more.

    1. It said take three times a day. I just thought it was three times a day when I was having symptoms of trigeminal neuralgia. But she was prescribing it for both that and nerve pain.

  15. When you go to the doctor and you are in pain or have any kind of problem it is hard to focus and remember what they tell you. My daughter always goes with me and I always have to ask her what the doctor said after we leave the office. It also helps that she is a nurse! Hopefully taking the Gabapentin three times a day will keep the pain under control!
    As far as the Vetmedin goes, hopefully whatever the doctor prescribes will help until the Vetmedin becomes available!

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