Miserable

The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.

Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.

PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.

I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.

I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.

Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)

I hate MS.

Back On the (Weak) Juice

Today my neurologist put me on steroids again. (Head in hands...)

I am nervous, although I am not sure exactly what I am worried about. The main problems I have had from steroids were not sleeping (three hours and awake for the rest of the night) and joint pain. And blurry vision, but it was still functional. Joint pain was when I was on IVsolu-medrol, not prednisone, and this time I am taking prednisone.

This time I am on a much lower dose, though: 100 mg for three days then a five-day taper.

In addition to the prednisone, my neurologist prescribed a different sleeping medicine, Sonata. I am not sure it will be a good fit for me, because I read online that it only works for four hours. That is how long I got from Ambien, which works at least seven hours for most people. I will give it a few days. It looked to me like extended-release Ambien might be a better fit for me. I will ask about it if Sonata does not work.

Wow, I am feeling really anxious. I guess I am still not comfortable with steroids. I feel really sick while I am on them. However, they have helped my symptoms in the past, and I am struggling so much with my MS right now. I am in so much pain. It is worth a try.

I am worried that my sleep problems will get worse, but I am reminding myself that I worked through it in the past. I think I called out sick from work once or twice the last time I was on steroids. I was dizzy, not safe to drive, and absolutely miserable... but I survived, and then I felt better than before taking the steroids.

MS is not enjoyable.