Snowflake Posted August 6, 2019 Share Posted August 6, 2019 Good day Fellow Survivors, I hope you are all coping. Just wanted to let you guys know that I completed my season this year about 2 weeks ago. Started in Feb and I find that my recent cycles have been worse. I did have some really nasty ones. This year left me climbing up walls in hospital, pushing my wife through the window and breaking some stuff at home, all whilst damaging both my hip replacements in the process. Yep, It got ugly. Unfortunately all these events took place during moments that I ran out of o2 of course and the little that I had ran out during treatment, which I think is worse off than not doing the treatment at all, if you gonna run out. as always, I learn and never learn at the same time. Morphine did nothing either so Iv'e learned. It got ugly. If I look back at previous cycles in the last 24 years, It seems I tried something different each time and in the process end up messing myself up even more and of course it all comes back to oxygen in the end once again. I really don't know why end up making wrong choices, but I know that I was experiencing really bad PTSD just before this cycle started so my mind was messed up also... Ok, so this year I came to many points of suicide. The word "suicide" even now, seems heavenly to me and in my mind, I have killed myself a thousand different ways. I ended up staying awake after my first attack at night until the mornings to save on o2 cos to be honest, I am financially drained. Aside from being emotionally and physically drained as well. Anyways, I had occipital nerve blocks done on 4 occasions this year and it lessoned the frequency, but was unsuccessful. So I decided to try the sphenopalatine ganglion block. I know this has been discussed on here before, however, I just had to do something. I didn't care of the consequences cos I was prepared for the worst and to be honest I am so tired of living like this. I must say upfront even though we suffer with Cluster Headaches and we all can relate to the pain associated, that this procedure is really not for the faint hearted. I had it done under no anesthetic and wide awake with my head just in the entrance of an MRI machine as they took imaging each step of the way. It was really sore. It was a hectic long needle as well. Once he was behind my eye up to the forehead on the affected side , he triggered a MOTHER of a CH and then released cortisone and alcohol to see if it aborts the headache in an attempt to eventually burn off the affected vessel. It did abort the attack. I was left with severe numbness and my face felt like it was drooping quite badly. I had double vision and thought I had a facial stroke. The Dr reassured me that this feeling was normal and would eventually subside. Which is did later that evening. Once that numbness wore off, the pain of where the needle was inserted started to set in and was uncomfortable. I still have slight discomfort up until now. The attacks then stopped for 2 weeks straight. No shadows. Nothing. Then it started again for another month or so. But mild attacks and less frequent. Then it stopped. However, I know for a fact that this procedure didn't stop the cycle. It was nearing the end of my season as well. I am glad that I went ahead and tried it though. As I mentioned, I would try anything as I really don't care what happens next. I know that sounds selfish and stupid but I have reached my threshold for pain and I don't thing I could be anymore depressed or anxious than I am right now even though the season is over for now. I have heard from some doctors in the past that It can end completely when you reach 40 in "some" cases. Depending on when it first started. But I obviously think this is a joke and at the same time I have a tiny spark of hope as well since I will be turning 40 next month. I don't mean to diminish any hope fellow sufferers have. I am merely just updating on my experience this year. I tend to update on the group once in a season. I have attached a copy of the x-ray regarding this procedure. I still have an oxygen tank in my car and take it wherever I go. But I need to let go of it soon since the season is over for now cos rental kills me as well. Thanks for taking time to read and PF wishes always. Quote Link to comment Share on other sites More sharing options...
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