Really rough week

I haven't been able to do much this week. And I've had so, so much to do.

My cluster headaches started back up again. And they have been really bad this time. Cluster headaches come every day (or multiple times a day) for a period of about three months. When that period starts the headaches normally ramp up in intensity as the weeks go by. This time, however, mine went straight to some of the most painful headaches I've had and they have stayed that way for two weeks now.

For a while I was very lucky and drinking coffee was making them go away- something about the caffeine. But that stopped working, so I set out to find a neurologist. I went online and found a neurologist near Hachioji station, about a 40 minute bus ride away, that was listed as being fluent in English- or at least having a translator. I called to set up an appointment but, since I'm a new patient, I had to be seen during clinic hours first. I didn't need a referral from a physician, which is nice, but the clinic hours ended at 4:30 and I couldn't get the clinic until 4:15, a close call.

Luckily I made it the next afternoon just in time. I could tell by the way the staff stared at me and shuffled around uncomfortably that they were not prepared to speak English- the translator must not have been there. Three different people took turns helping me and with a few key English words they were able to get normal information such as health and family history. They gave me a magnetic patient ID card and had me walk around the corner to wait to be called into an exam room. After about 5 minutes I was called in and was talking to a neurologist. Well, not quite talking. He would say something in Japanese, I would be confused, then he'd say a couple words in English and I would answer in simple English. Then it would all start again.

Actually thats an amazing thing that happens sometimes- people continue to speak full Japanese sentences to me after I mime that I dont understand or even say so in Japanese. They just keep speaking in full, swift sentences. Like, try to say one word at a time. Pantomime something. Speak slowly. ANYTHING. I'm trying here but my vocab is tiny and I need you to talk slow! Give me a chance! I mean, if I didnt understand one whole sentence, what makes you think I'll understand another?

Anyways, I had taken a screen shot on my phone of the Wikipedia page about cluster headaches in Japanese, so I showed him that. He asked if I wanted an MRI that day- apparently if you want you can just ask for procedures like that and just get it done that day. I said no, since I'd had an MRI, and multiple other tests, and always had normal results. He asked how often I was having headaches. I told him once or twice a day. He then said that it sounded like migraines because cluster headaches usually happen many times a day. While they can happen many times a day, its also very normal at once a day. I just told him they're not migraines, they're cluster headaches. He didnt argue, but I suspect thats more because of the language barrier than anything else- I got the feeling he just wanted to give me what I wanted and be done with it.

So then we moved on to medicine. I told him I had been on Verapamil and Sumatriptan. He looked up Sumatriptan, which I use as a nasal spray to stop a headache once it starts, and asked if I wanted one or two. I was confused- if I'm having at least one a day every day then one or two would only help me two days at most. So I told him that, and he said oh, ok, so do you want seven? What?? So I changed tactics- I told him that what would really help is a daily pill to prevent the headaches. He said, "oh there's no pill to prevent migraines." That was extremely frustrating because there definitely are pills used daily to prevent migraines but also I told him they weren't frickin migraines! SO I said in the US I was on a daily preventative pill. I looked up Verapamil and showed him- then he goes "OH, Berapamil!" So he looked that up and said he could give me 14 of those. I just said screw it, that buys me two weeks to figure out what to do next, so I agreed to the 14 Verapamil and the 7 Sumatriptan nasal sprays.

I then went back out to the front desk where I paid ¥1050 for the visit. Then give me a couple slips of paper, all in Japanese, that must have been a receipt and my prescription. Then they directed me around the corner to the pharmacy. I handed the lady at the pharmacy counter all 3 slips of paper. She picked out the right one and talked in Japanese. I gathered that she asked if it was my first time there and she asked if I had some sort of a book. I said no so she had me pick out a design (polkadots) and she give me a little booklet that looks sort of like the bank booklets you get here. I gather that its a way of tracking your pharmacy use. Anyways, then I got a number and I waited for my prescription.

When my prescription came up the pharmacy tech give me basic directions in English, but I basically already knew it all. When I went to the counter to pay a lady in front of me was just finishing. As she'd about to leave she turns to me and says, in PERFECT English, "Are you ok? Do you need me to translate something for you?" I was frickin blown away. I was in a bad mood from the frustrating experience and I really wanted to tell her that it was bullshit to ask me now when my entire experience is just about done. I mean, I had seen her in the doctors office too, she was basically there the entire time I was, one step ahead of me. So I said that would have been helpful but no, I'm fine now, thanks.

So for the 14 daily pills and the 7 nasal sprays I paid about ¥3500. I'm covered under national health insurance, for which I pay ¥1000 per month, and it covers 70% of all medical expenses. I don't need to try to pick a doctor covered by my insurance and instead I just pick whichever doctor I want to see and go there. Its a very convenient system for me so far. So that was on Wednesday and I'm down to 3 more nasal sprays left and I haven't used them for every headache since you can't use more than two in a day and I've had more than that. Also, the daily pill he gave me is 40mg of Verapamil. Most people start at 120mg per day. I'm seriously concerned that this will not have any affect but I'm going to give it a week to tell.  I need to call and set up an appointment for next Saturday to get more nasal spray and maybe a higher dosage of pills. And I'll see if they can schedule a translator to be there this time.

For some reason I expected the hardest part to be finding a doctor. I didn't even consider that I would have the same problems I had back in the US- misdiagnosis. At least this time I am confident that I don't have migraines.

So lately, with my commute being about an hour and a half long this week, and with headaches happening when I get home, around 2AM or around 5AM, or all three, I've hardly had any time to do anything other than eat and be exhausted. And thats especially frustrating because this week I needed to finish prepping boxes to send to the US for Christmas. Now those boxes are still here and that means they're going to be late for Christmas. My headaches have basically ruined Christmas. And I just feel shitty, all the time. Tired, and in pain- because in between the headaches I have this constant buzzing pain in my temple. I'm so sick of these frickin headaches, they're really kicking my ass mentally.

And I'm not writing this for sympathy, you don't need to tell me that you're sorry I've had a rough week or anything like that. This is just the biggest thing I've been dealing with lately so I figured this would update everyone on whats going on here in Japan. And I don't often talk in detail about the headaches, so I saw this as a chance to inform anyone who's curious. I have a couple other posts lined up about cluster headaches, so just be ready for that. And for now, if I'm a bit unresponsive just be sure it's because I'm strung out and exhausted and mostly don't have much to say that isn't complaining about my current situation.  I'll keep you updated though.

And if you want to see more about cluster headaches theres a great website here: www.ClusterBusters.org

K+K