I really don’t have much to say about this week other than it was overshadowed by headaches. Mama mouse, Baby mouse school house went well, even on Friday when I was downed by a terrible headache for about 3 1/2 hours. Luckily we had gotten most of our subjects done when it hit and then Sarah was very kind and patient and even did her math all by herself.
Most of my daytimes really were good and I had two nights that only had two headaches each, lasting only 30-60 minutes so I was feeling hopeful. I was thinking maybe all of the dietary changes I made were helping. No sugar, no chocolate, no caffeine, no dairy, and no gluten. Celery juice and magnesium daily. Breathing more fully more often. Making sure I drink enough water. Yoga every morning. And no way to tell if anything is actually helping! I know many of these are good to do no matter what, but some of them certainly make some moments feel harder. I’m scheduled for a series of injections in the back of my head tomorrow morning to hopefully function as a nerve block to help my system reset. I intend to continue with most of my lifestyle changes anyway, but I wonder for how long.
When I share with people about my headaches there are often questions. Here is what I know. On a continuum of headache varieties, clusters are put at the farthest end of the worst. They are called the suicide headache. Clusters are rare as headaches go and even more rare for women to get them. Sometimes people with clusters can’t have jobs or maintain relationships. The headaches usually come in the night, so a person wakes up feeling like a knife is going through their eye to the back of their head or their head is being carved out by lightening. For me it is always the right side and it feels like my upper right back, right neck, and right side of my head are on fire. Sometimes massage and touch help. Sometimes they make it worse. It can seem appealing to smash my head into something hard to make it stop hurting. It is hard to be still. Sometimes a headache lasts 15 minutes. Sometimes 3 or more hours. Sometimes mine last longer because they decided to take on migraine attributes too. They are called cluster headaches because they come in a cluster of time, daily/nightly for 4-6 weeks, usually. Except when they shift to being chronic and then the cluster doesn’t end. Mine are chronic when not controlled by meds and this cluster has broken through my usual level of meds and persisted through all of my attempts to stop the cluster. I don’t know when they are coming and the onset can be sudden, especially when they come during the day. I expect them to happen almost every night and try to find just the right position to help ward them off. I am scared to go to bed even though I know I need to sleep. It is miraculous if I have a night without a headache. Sometimes the zomig nasal spray works to clear a headache in 5-15 minutes, but if it doesn’t work within that time it’s not going to work. It is approximately $100 per zomig spray up my nose!! I am still waiting for the emgality injections and every party working on it seems to be doing their part and yet… I have nothing and it has been weeks since my doctor prescribed it.
I appreciate all of the concern and compassion that has been forthcoming. I wish that doctors and insurance people could add a similar level of compassion. I wish that in addition to telling me things will take longer they could also say, “I’m so sorry you are in such pain.”
When I’m not in pain then I feel either normal and great or completely worn out from having survived a headache. I’m so tired of this. It is physically, mentally, and emotionally draining.
On the plus side of things, Sarah has been reciting Goodnight Moon to me every night in her room with great enthusiasm. When she says, “goodnight socks” she delightedly picks up her foot and points to her sock. She also calls me “Mommy Sincere.” Amy continues to enjoy being a witch and has been beating me in a game of Catopoly.
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