Cluster Headache Follow-up
I've been feeling desperate to come off the prednisone and not surprisingly, I got too aggressive with my tapering plan and made a mess of my headaches yesterday. I was at 42mg on Monday and stepped down to 37mg on Tuesday and 32mg yesterday. That was too much and it resulted in a day full of headaches that didn't even respond to my oxygen therapy. I recovered nicely though and only had one headache during the night.
We saw Dr. Sethna this morning for my two-week follow-up. It seemed to us like he was trying to find some sort of correlation or common thread for why my headaches are happening but there really is none. I told him that I felt "They happen because they happen".
Considering that I'm more prone to my headaches at night while I'm sleeping, he wanted to make a case for this being a melatonin issue. He said that melatonin is suppressed by the body during daylight and that it enters the bloodstream when you're in a dark environment and that perhaps by sleeping with a light on, I could help lessen the frequency of my attacks. I don't think so. I just don't. He also mentioned neck and muscle tightness being a possible trigger but again, I don't think that's an issue. We tried the muscle relaxer Tizanidine and it was of no benefit at all in stopping my headaches that I could tell. Still, he wants me to try another drug from the same family called Baclofen. I dunno—I told Tammy on the drive home that I think I'll take a pass on it. I think I'm just going to have to allow the headaches to run their course and that throwing drugs at the problem is maybe only going to exacerbate it and I don't want to risk that.
We agreed that my coming off prednisone too quickly doesn't help matters as we saw from yesterday's experience. I showed him the "My Pain Diary" app from my phone so he could see the frequency of my headache attacks.
Tammy mentioned how this latest phase of clusters seemed to be brought on when I was exposed to some strong oil-based paint fumes while doing the work in our laundry room last month. While I think she's likely right, I also think there's something to be made of the fact that my testosterone level is very low at 137. I mentioned to Dr. Sethna that I still hadn't been able to get the prescription for Androderm filled because of some necessary back-and-forth between his office and my insurance company but that I should have it in the next couple of days. He said my testosterone score was the lowest of his cluster headache patients and talked again about the possibility that increasing that level could help to break the headache phase. I'm still hopeful of that and feel it's my best bet apart from just having the cycle play itself out.
Rachel came by yesterday afternoon to spend some time with us. That was so nice of her. She and I sat at the kitchen table for most of the afternoon and evening and chatted and caught up. I really enjoyed our time together because it allowed me to think about stuff other than when my next headache might hit me. We all went to dinner at Outback Steakhouse later in the evening and just really enjoyed our time together. I love her so much! Tammy told me this morning that she came here to spend time with me. I sort of thought that but I wasn't sure. How sweet of her. She mentioned to Tammy that she could see my tiredness in my eyes. I'm teary-eyed as I write this.
This has been going on a long time now. It was 4 months ago today that I crashed my bike when I fell asleep on a ride; a sleep no doubt caused by my prednisone use and the lack of sleep it was causing me. I'll never take my headache-free life for granted again should I ever be so blessed to make my way back.
We saw Dr. Sethna this morning for my two-week follow-up. It seemed to us like he was trying to find some sort of correlation or common thread for why my headaches are happening but there really is none. I told him that I felt "They happen because they happen".
Considering that I'm more prone to my headaches at night while I'm sleeping, he wanted to make a case for this being a melatonin issue. He said that melatonin is suppressed by the body during daylight and that it enters the bloodstream when you're in a dark environment and that perhaps by sleeping with a light on, I could help lessen the frequency of my attacks. I don't think so. I just don't. He also mentioned neck and muscle tightness being a possible trigger but again, I don't think that's an issue. We tried the muscle relaxer Tizanidine and it was of no benefit at all in stopping my headaches that I could tell. Still, he wants me to try another drug from the same family called Baclofen. I dunno—I told Tammy on the drive home that I think I'll take a pass on it. I think I'm just going to have to allow the headaches to run their course and that throwing drugs at the problem is maybe only going to exacerbate it and I don't want to risk that.We agreed that my coming off prednisone too quickly doesn't help matters as we saw from yesterday's experience. I showed him the "My Pain Diary" app from my phone so he could see the frequency of my headache attacks.
Tammy mentioned how this latest phase of clusters seemed to be brought on when I was exposed to some strong oil-based paint fumes while doing the work in our laundry room last month. While I think she's likely right, I also think there's something to be made of the fact that my testosterone level is very low at 137. I mentioned to Dr. Sethna that I still hadn't been able to get the prescription for Androderm filled because of some necessary back-and-forth between his office and my insurance company but that I should have it in the next couple of days. He said my testosterone score was the lowest of his cluster headache patients and talked again about the possibility that increasing that level could help to break the headache phase. I'm still hopeful of that and feel it's my best bet apart from just having the cycle play itself out.
Rachel came by yesterday afternoon to spend some time with us. That was so nice of her. She and I sat at the kitchen table for most of the afternoon and evening and chatted and caught up. I really enjoyed our time together because it allowed me to think about stuff other than when my next headache might hit me. We all went to dinner at Outback Steakhouse later in the evening and just really enjoyed our time together. I love her so much! Tammy told me this morning that she came here to spend time with me. I sort of thought that but I wasn't sure. How sweet of her. She mentioned to Tammy that she could see my tiredness in my eyes. I'm teary-eyed as I write this.
This has been going on a long time now. It was 4 months ago today that I crashed my bike when I fell asleep on a ride; a sleep no doubt caused by my prednisone use and the lack of sleep it was causing me. I'll never take my headache-free life for granted again should I ever be so blessed to make my way back.
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