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ClusterBusters
Dana129

National Headache foundation article from last year

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https://headaches.org/2018/04/26/bob-wold/ damn this article really hit me hard, especially the start. Thinking about how I was so driven to build a future and make something of myself, to preparing for a life of extreme suffering. Even though I’ve recently started to take control of my life again, losing weight I had recently gained, regaining my focus on studies, and overall enjoying life again for the most part, sometimes things like this article, pull me back into that dark place temporarily. I’ve pretty much had to give up my aspirations of joining the military after university, that’s something I’m very bitter about to tell you the truth. Clusters have really robbed me of 2017 and 18. Within 2 days of my first ever cluster headache, I was already certain what I had was clusters, googling my symptoms, I wasn’t alarmed at all when I read cluster headaches...then, I clicked the article, Suicide Headaches, my heart sank when I read those words, once I had read that article, I knew my life was about to take a turn for the worst. I was so enraged that I pretty much destroyed bed room, punched holes I’m the wall, broke my computer, I had never been so angry in my life...after that I just sat on the bed sobbing quietly thinking about how this is going to destroy my life. I had graduated high school just only a year prior to my first ch...my life as an adult was over before it even started. My January cycle of this year pushed me over the edge big time. Timing could not have been worse, Family troubles, Studies, everything just crashing down on me. Thank God I found this website, I’d never kill myself, but I will say this place saved my life. For now I am back on the horse and doing my best to keep up the momentum, and this website has helped me do that so much 

Edited by Dana129

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Hey Dana,

 

I feel your pain, CCH has robbed me of my life as well. I had just gotten a series of 5 surgeries done to fix my neck and the first time since I was 14 (I’m 40 now) I wasn’t suffering from severe pain. Then wham the CCH started and never stopped. It will be 2 years come end of August. I just got an email for a locum job in TX for 4K a week. Too bad I need to retake my boards, too bad there is no way I could go back to doing cardiothoracic surgery again. Haven’t been able to work for several years now. My job used to define me to my core, at this point the best I can hope for is to get these CH better controlled and try and get a job doing dermatology or headache medicine or something. One day I’m sure I’ll be able to be a productive member of society. But for now all I can do is wallow in pain, pray my O2 works and wait it out until March when I may be able to successfully bust. In the mean time I am pursuing ketamine nasal spray. We’re both a fing ray of sunshine. Lol. I’m going to read that link now. Keep your head up. Things will get better. 

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Just read the article, I never feel alone, but I do get scared from time to time that this hell will be my life until the day I die. And then I take another dose of psychedelics and try try again.  So far no luck. I’m blocked until at lease March. The last 4 months have been hell, and 8months seems for ever to wait. Ever since I had a new “10” that made my old 10 a 5. It’s been miserable. Can’t say that post makes me feel any better, wish it did. 

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2 hours ago, Freud said:

Just read the article, I never feel alone, but I do get scared from time to time that this hell will be my life until the day I die. And then I take another dose of psychedelics and try try again.  So far no luck. I’m blocked until at lease March. The last 4 months have been hell, and 8months seems for ever to wait. Ever since I had a new “10” that made my old 10 a 5. It’s been miserable. Can’t say that post makes me feel any better, wish it did. 

Holy smokes! What has you blocked until March buddy?

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I became bipolar in my early thirties. Was on a drug called invega. I was on monthly injections when busting first worked. Then my doc switched me to the quarterly injection. He told me it doesn’t interact w 5-HT receptors but rather dopamine. So I said sure 4 times a year is better than every month. Then my CH came back and I haven’t been able to bust since. He was wrong if you read the fine print it says “does interact w serotonin but MOA is unknown”. It was too late, the half life is 3 months, it takes 5.5 half lives for a drug to clear your system. So that means 16.5 months!!!!  My last dose was oct 2018. When I dose I get a shitty body load and my eyes dilated but that’s it. No trip even at 10g or 4 tabs of L!  Crazy I know. So for the foreseeable future I’m clusterfucked...

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Find something that works only to have another med (for which there were alternatives you were not informed of) keep it from working for over a year! Without hesitation I give that a definitive... D#$% that sucks!

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On reddit there is a subreddit AskMenOver30 which is not my age group since I'm much older. I read it to see if I can answer anything. A young guy in his thirties was asking what he could do to support his wife when she "goes down" during a migraine episode. He helps with the practical things like the house and kids but he knew he had a "terrible bedside manner."

I was quite stunned at the number of young men who replied and their cluster headache experiences. They were talking about it to explain what it does to their lives in order to help the original poster understand what it was like to go down. Man do I wish that I had that type of resource thirty or more years ago when this started for me. I'm fortunate and thankful to have a spouse that knows when to sit with me and when not to and take care of things. That alone has been a godsend and helps me stay on the path of a decent life. In a sense I was fortunate because my grandfather had cluster headaches and I had some context to understand that it wasn't my fault. Still the anger and frustration that I was being robbed of days and weeks. That the headaches were stunting my life and stealing time from my young life. I didn't want to be an old man like my grandfather.

This year I had that awful feeling the cycle was starting up again and I didn't want it to become self fulfilling prophecy but there it is. I am very glad I also found the subreddit Migraines where a long ago post directed me here. The resources help but it is more knowing that it is not just me and I am not the only one going through it.

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