Whew. So, I'm back at home now, freshly showered and in pjs and have just played with one of the two bunnies who wanted to come out to play and say hello. What a busy few days this has been.
I'm happy to report that my infusion for my NDPH was a pretty good success story, and I was released after the 3rd day today. The only medication that I had a problem with was the Solumedrol steroid - it made me feel as if I was on the sun, I was burning up so badly! I didn't have a fever of course, but I felt ready to rip off my clothing... which wouldn't have done anyone much good.
I was in the infusion room with a few other headache patients, and we all kinda shared stories amidst falling asleep to our meds... today was my 3rd and final day of infusion, and I didn't have to have the Solumedrol today. That was a plus.
Anyways, I'll be back, but it's time to finish unpacking and get settled back in... the nurses were kinda suggesting that I not go to work tomorrow, but I don't know that I can just sit around again. I need to be busy! I actually think that my afternoon client may be cancelled, so that would be a plus for me if I'm feeling tired.
Thanks for the well-wishes, and to new followers... thank you for joining me, and I look forward to connecting and hearing your stories.
Oh, yea... my pain level is pretty low right now... I feel almost naughty talking about it, as if I may jinx it... but still... yay!
Wednesday, February 4, 2009
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6 comments:
So glad your pain levels are down!! Hooray!
Great News! Congratulations!
So glad to hear that they got your pain level down. Can you tell us more about this infusion center. Is it especially for headache patients and what you think they gave you that helped the most? I ask because your story is so much like my daughter's and she's in Providence.
EmilyR, the infusion center is part of my headache doctors' hospital in PA. They really used a mix of things - there were about 4 of us in the room receiving treatment at the same time, and even though we're all headache patients, we all were receiving different medications. Even if we were receiving similar things, they were at different dosages, different intervals, etc. I live outside of Boston and am considering looking into other options that I could explore in the Boston area, as traveling to PA just tends to get pretty taxing after a while!
I live near Cinci, Ohio. I have a great doc, but he is not keen on inpatient infusions. He suggested I go to Cleveland Clinic or the Michigan Headache Clinic (or something like that). The criticism he has is that even if pain levels are decreased, it is only for a short time and it is very expensive. My thought is perhaps they can find a decent concoction that can be repeated. Has that been your experience Joanna? Thanks!
Dave
Hi Dave, thanks for visiting. My specialists were able to use the "concoction" that they used for me when I did my 10-day stay with them a few years ago... I honestly don't know about cost since it was covered (luckily) by my insurance, but I can imagine that it's not cheap. I have certainly heard about the Cleveland Clinic, and know that it's definitely a big name in the "headache world".
Already, since being back from my infusion, I'm feeling my old pain again, but the bad cycle was definitely broken by the infusion, and I needed that badly. I believe that neurologists/specialists who have their own practices and aren't within a hospital are less likely to turn to infusion because of fewer accessibility to beds, meds, etc. and other issues (like more individual liability vs. a big hospital). Who knows.
If you have a blog or anything, let me know!
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