I haven’t posted a personal update in awhile. The snow is blowing and I’m not going anywhere for at least the day, so now is a good time.
My doctor has taken me off all the preventives and put me on Verapamil 180 mg. During the first two weeks, I mistakenly took the pills twice a day and only had 4 migraines. Then I dropped back down to just one pill a day and went through a nasty cycle of migraines, including one that had me crying “It’s a 10!” and calling 911. Fortunately it was “just a migraine” but I was only convinced it wasn’t an anyeurism after the CT scan came back clear. At the current dose attacks have slowed to 10 or less each month. I think we are going in the right direction but it remains to be seen just how infrequent they will be in the long run.
After my 2nd round of Prednisone right after Christmas, my neuro started weaning me off Gabitril and prescribed Verapamil. It is a dual-purpose calcium channel blocker that can help reduce both migraines and cluster headaches. During my 2-week double-dosing mistake, I didn’t have one single cluster attack. Once I dropped back down to the “normal” dose, I went right back to my cluster headache routine of 3-5 days of attacks every other week. I was scheduled for a med check this morning, but this Midwest snow storm closed his office. So, I sent him a message asking if I could go back up to taking the Verapamil twice a day. We’ll see if he goes for it.
I continue to use my CPAP every night. If I forget, my family will complain that my snoring keeps them awake. My sleep quality is better, although I still wake up at 3:00 a.m. with a cluster attack at least twice a month. Treating the sleep apnea really didn’t help the migraines or cluster headaches. I was really disappointed by those results.
All that back and shoulder pain I was complaining about has been aggressively treated in the last several months. Thanks to physical therapy, my shoulders are now moving properly and I have begun strength training. I have to go very slowly because too many reps or weights over 1-2 lbs. will flare up the pain. It’s a delicate balancing act. They also found a bulging disc at C5-C6. A cervical epidural stopped the numbness and tingling in my thumb, but did nothing for the pain. I had my first round of Trigger Point Injections about a month ago and experienced total pain relief for a whopping 3 days. Then it returned with a vengeance, so I called to complain. A second round of Trigger Point Injections did nothing to improve the situation. So now I’ve been diagnosed with Myfascial Pain Syndrome. It’s similar to Fibromyalgia except the pain is concentrated in specific locations, not all over the body. The best help I’ve found are things I can do at home: heating pads, Tiger Balm, and a lower back support wrap. All of these will cut the pain down but never take it away completely. I’m learning to adjust and pace myself. This is very hard because in my mind I can still work as hard as I used to. If I mask the pain with Tylenol, I can push it hard for about 4 hours. Then I crash for 2 days. That’s not worth it. So I set my expectations low and do what I can.
Getting some relief from head pain has highlighted how much pain I was able to ignore from the rest of my body. Now that my head has quieted down a bit my back is screaming for attention. I’m really hoping this is just a temporary stop and not what I can expect long term.