@tuckerp
The correlation of the experience that your wife had to my personal experience is amazing to me. My very first problem was excruciating body pain only at night. I was fine during the day. Fortunately, I soon developed a flare of uveitis which gave me some credibility that I wasn't making up the pain I was experiencing. A single large dose of Prednisone that an ophthalmologist gave me for uveitis also stopped the body pain.
I kept getting flares of uveitis along with more body pain. I only saw an ophthalmologist on a regular basis until I started having "electrical headaches" around my left eye. I reported the headaches to my ophthalmologist who said the headaches weren't an eye problem. My ophthalmologist referred me to a neurologist. The neurologist diagnosed trigeminal neuralgia but he wanted me to have a CT-scan of my head to make sure I didn't have a brain tumor.
Those electrical headaches didn't ever stop completely but I had some degree of control as long as I took Prednisone. Whenever I had another flare of uveitis my ophthalmologist supplied ample amounts of prednisone to me. Let's just say I had a large stockpile of prednisone that I could take for all kinds of pain but prednisone was only prescribed for uveitis.
I stopped seeing all the -ologists I was getting referred to because they could not determine what was causing of of my problems. I took Prednisone for 15 years while only seeing my ophthalmologist regularly for every flare of uveitis ... I thought everything was good as long as I had prednisone to take until I felt like prednisone was the problem.
One day I decided to throw away my entire stockpile of prednisone. Things deteriorated quickly after that. My wife took me to her primary care doctor who could not believe how much prednisone I was taking. I got a fast referral to a rheumatologist who eventually replenished my stockpile of prednisone and diagnosed PMR.
The electrical headaches never did go completely away. I called the headaches "zaps" of electricity until the zaps became more and more frequent. I once reported to my primary care doctor that I was having 1,000 zaps per day and needed more prednisone because I was going to take 100 mg per day for a few days to quiet it down. My primary care doctor believed me because he knew I didn't make up anything. He only asked me if I was sure 100 mg of prednisone would be enough.
It all culminated in having facial electrocution for hours at a time. That was only after many years of just the electrical zaps. Fortunately by then the imaging techniques for trigeminal neuralgia were much better. A specialized MRI scan showed the problem and I was sent to a neurosurgeon. It wasn't a brain tumor like your wife had. It was something microscopic. The surgery I had was called microvascular decompression (MVD) surgery.
https://www.facepain.org/managing-facial-pain/treatments/mvd/
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Unfortunately the blood vessel that was compressing my trigeminal nerve was "traversing though" my trigeminal nerve. The neurosurgeon said he did the best he could but needed to dissect the blood vessel away from my trigeminal nerve but couldn't completely separate the blood vessel from my trigeminal nerve. I have some post operative complications from the surgery but I'm grateful the electricity stopped.
I'm also grateful that it wasn't as serious as GBM.
@dadcue thank you. I do believe you are a medical marvel. You know your Prednisone. Fortunately my PMR journey was about 9 months and 6 months on steroids. As you know my wife's didn't end well.