I've been meaning to post about this for quite a while. I've been seeing a new pain doctor for about 2 months now. I try not to a doctor's name if I have something negative to say, but I only have positive things to say about Dr. Wilkin.
I've had a strong aversion to neurologists ever since a bad experience at Children's Memorial (no need to mention a name here). But Dr. Wilkin is awesome. He is so well-informed and up to date. He actually understands all about Chiari, EDS, and POTS. I didn't know that was possible outside of the Long Island and Baltimore.
He's be trying to help me manage my pain and my fatigue. It's actually quite a saga, so I won't describe every step of the medication experiments. Just the basics:
Tried replacing Provigil with Nuvigil. It was too strong and caused me to have a very scary episode of clinical mania. I'm back to Provigil, and at lower doses.
However, Provigil alone seems to only keep my brain awake...not actually give my body the energy to do anything about it. So, I've added a low dose of caffeine (about 30 mg) to my daily regimen. I'm very sensitive to caffeine, so this actually does a lot for me. When I see Dr. Wilkin next, I will ask him if he wants me to continue on caffeine, or switch to a different stimulant. I think if the caffeine is helping, I should just stick with this. Everyone else is addicted to caffeine. Why not me? And any stimulant will make your heart race. I've already learned that.
The only problem with all of the stimulants is that I am staying up later and later at night. It's getting out of control, with my average bedtime being around 3 a.m. and wake-up at 1 p.m. I have developed an immunity to Ambien, so I'll have to see what Dr. Wilkin thinks I should to about my new insomnia.
Unfortunately for me, my insurance company no longer wants to prescribe me Provigil, because, while I have the clinical symptoms of Narcolepsy, it has not been confirmed by a sleep study. So, we'll have to keep battling to keep getting Provigil. I don't think I could function anymore without it. At least I'm taking a low dose now, so the pills I have should last me a while...hopefully until the insurance company is willing to help me out.
For pain, we first tried Percocet. Unfortunately, I had a bit of a stimulant effect from it. So it also made me manic, without providing enough pain relief.
Next, we tried Ultram. Ultram (generic: Tramadol) is a non-addictive, non-narcotic pain reliever for moderate to severe pain. It has NO side effects (for me), and it truly does help me overall. The only thing it doesn't help with is when my pain level is above an 8. That type of pain truly does need an opioid (narcotic). Maybe Norco, since it is just Vicodin with less Acetaminophen.
I also plan on asking Dr. Wilkin about Trigger Point Injections and Nerve Blocks for my head and neck pain. We'll see if he is up for some needles!
I'll be seeing him again on Wednesday. I'll try not to wait so long to post this time. I've been so manic, that I've suddenly had a lot to get done (bipolar joke...some of you know just what I mean).
