Growing Weary

Q: I'm having one of those days when I REALLY REALLY REALLY REALLY don't want to have a brain injury anymore. It's just too friggin' exhausting. I need some respite but sadly there is no way to take respite from ourselves.

A: You sound very frustrated and then some. I feel like I went to sleep having a bad dream 5 years ago and the nightmare keeps getting worse and I can't wake up. What's the part of this nightmare you are wanting to wake up from? I know it's been a much longer journey for you. Would it help if we just listen to what's wrong? or do you not want to share the specifics? I wish we could jump ahead 20 years or so in the future to a place where more is understood about brain injury, more can be done for us and that we all have homes where we feel like we are still loved and valued members of society and don't need to worry about our basic needs. I'm "just" beaten down from the migraine I've had literally 24/7 since late Nov. which has been much much worse in the last month. It turns out the reason it's been so bad lately is that a nurse at the Cleveland Clinic gave me the wrong instructions. The doc. wanted me to cut back on my old migraine prevention med when she added the new one but her RN told me to stop the old one completely. I questioned her repeatedly because I knew that that's not what the doc. had said was the plan but the RN insisted the doc. must have changed her mind. So, a month of medically induced hell later.... A couple of weeks ago I had a constant migraine for 5+ days. I usually have 2-4 migraines/week. Usually one dose of my medication works, but upon occasion I will get a 2nd headache the same day. It's as if my medication is slower to work than normal and the headache just keeps coming back.? When this has happened, my doctor has given me a steroid injection to get the headache to stop. Of course, steroids come with problems, but it only took 1 injection (or a couple doses of pills) to finally get them back under control. This has only happened a handful of times, but it is pure HELL. I had it happen again just a couple of weeks ago when I was in the hospital. I told the doctor about my previous experiences and asked him if the steroid thing made sense to him. He said yes and gave me an injection. I had forgotten whether I also took my pain medication at the same time and much too painfully learned that I needed the pain medication as well as the steroid injection. The steroid just broke the cycle....did nothing for the pain. Do you have a doctor you can call about this who would call in a prescription for a few pills? If I remember correctly, I was given 5 tablets, but it worked after taking only 3 (one per day).? Either that, or make a trip to the ER.

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