I have a cranial cavernous malformation (low pressure AVM 2.3cm x 1.2cm. I had a bleed about 8.5 yrs ago with light stroke. I’ve had headaches all my life, and after 1998 every minute of everyday. There is 100% risk of complication for surgery. I had my first seizure about 2 years ago. At around 6 yrs after the bleed the pain was worse than ever and I couldn’t function because the pain was so bad. Ive been on morphine daily for about 4 years. Im also on Pregabalin for Glossopharyngeal Neauralgia, and immiprimine. Doses are on the high side. Every specialist I see says they don’t know how I do it. I almost went on full disability about 2.5 yrs ago, but I’ve been hanging on, and am definitely in a better place than I was 2.5 yrs ago. I modified my work days to work 7 hrs, not take a lunch, and go home at 3:30, working 7 hrs a day. I take meds when I wake (I wake with a headache), and then take none while I’m at work. As soon as I get home I take doses 2 & 3 immediately, and try to hold off on the last one for as long as I can. This allows me to function at work and drive. I DO NOT RECOMMEND THIS TO ANYONE!!! By the time Im taking meds right after work, the morning meds are wearing off very quickly, the Pain starts to increase dramatically, and I start getting dope sick, while I wait for the afternoon dose to kick in. Most often, I don’t start feeling relief and a little better by 8 PM or 8:30. This is a daily re-run of a horrible horrible nightmare. The pain never goes 100% away. The docs have told me they can’t make the pain go away completely, only make me feel more comfortable. It does seem its catching up with me and I seem to be sliding down the hill very slowly as pain levels increase, and I get more weerry from daily, continual, very strong drug therapy, strong headache pain, and strong left side nerve pain.
The support from Ben’s sites is the greatest contributer to me being able to keep moving forward. Truly a blessing.
Perhaps my greatest fear is that I’ll have an accident while driving and someone will get hurt. I absolutely do not go out after dark. Ever!
Best wishes to all!!