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Title: Frustrated! Post by MarkHW on Jun 26th, 2003, 9:59pm I'm really frustrated and have to vent. As many of you know I've had CH for 15 years, 10 of which I've been chronic. I have had migraine since I was 3 years old (I'm now 40). I'm also a single father and just started a new job and relocated back in November. I had about 10 months with very few clusters while on Sansert and then it stopped working back in January. Since then I am back to 3 clusters a day, every day.... My boss has been extremely understanding and has let me work from home, come in late, etc. Yesterday I went to a pain management center to get a treatment (some anesthetic infusion) that gave me almost 3 weeks cluster free. I took off work all afternoon and had this done and then poof - this morning I had a cluster! What the fuck is up with that? I am on prednisone and had the treatment yesterday and I'm still having them!!!!!!!!!!!! My friends are telling me I should consider disability - I can't/won't do that because then I will have no insurance for my kids and I WANT to work. My neuro says I should consider Gamma Knife - I WON'T do that! I am going to Arizona in July to Mayo clinic to be considered for occipital nerve stimulation - but I'm having trouble belieing it's going to work. I'm starting to get down and think that every attempt is just a waste of time & money.... I have not tried shrooms for a couple reasons. 1. Random drug testing at work. 2. Being a single parent with ex-in-laws who would use anything to take my custody away. 3. Not being able to take imitrex while using the shrooms. If the occipital nerve stimulation doesn't work .... I think I'm going to have to try the shrooms anyway. Am I ever going to have a normal life?????? You know if it wasn't for my kids I'm not sure what I would hold onto to get through this.... Ok... I'm rambling... it's almost 11:30 EST and I have to be up early for work. I'll probably be up injecting anyway! Thanks for "listening". Mark |
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Title: Re: Frustrated! Post by Not4Hire on Jun 26th, 2003, 11:51pm Quote:
Dear Mark...a couple *unsolicited* (it WAS your post) observations/possible thoughts(?).... this MOFO will take...and TAKE ...and TAKE ....until there is no more left. When there is no more left, he will work on your head until you start thinking about taking it back. That's when YOU win. Maybe it IS a waste of time and (esp.) money, but if you give up: the MOFO wins. Re: shrooms....#1--Random tests... my understanding is that 'shroom testing is RARE, expensive (for the employer), and the metabolites leave your system in less than 48 hours..(i.e.undetectable).....#2--Ex-inlaws...Are you gonna tell them? Take a weekend off...go camping alone/with a *friend* (this helps!) and get YOUR head fixed....repeat as necessary.....#3--Imitrex is an effective abortive...but you are *married* to CH, NOT to Imitrex..... sorry, bro, but that part is just a lame and selfish excuse. If you have other reasons, well, that's your business. But these three don't get it. At least it seems you are *open* to the idea--I hope you try it..... it worked for me when I was at 6" BELOW the end of MY rope. Know what you are doing before you do it......and Remember those KID's scared faces when you're punching walls and moaning at 2 dark o'thirty.... Meanwhile, hold on to *us*.....and Good Luck.... Steve(N4H) |
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Title: Re: Frustrated! Post by paul_b on Jun 27th, 2003, 12:29am Mark, pay heed to Steve. He stated things so well. Being married to CH is a key perspective. It requires us to make adjustments. Stay connected with us. There is no better place to vent and soul search when times are tough. My worst bouts with the Beast were around your age. Hang in there bro. |
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Title: Re: Frustrated! Post by MarkHW on Jun 27th, 2003, 1:39pm Thanks guys... I'm just scared of not being able to take the imitrex. The last time I was on something where I couldn't inject I wanted to die! I've decided that if the occipital nerve stimulation doesn't work... then shrooms are my next try. I'm usually in more control than I was when I posted the other night... just got soooo frustrated after taking off work for the infusion and then having one anyway. Mark |
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Title: Re: Frustrated! Post by don on Jun 27th, 2003, 1:58pm Frustration will do that and thats why we are here. You are living a normal life. The normal life of anyone who is afflicted with an illness that prevents us from living like other "NORMAL" people. But thats OK. We have our ways of dealing. Seems your dealing just as you should be. Coming here to vent and exploring other methods of treatment. Thats just what productive afflicted people do. I think Not4 has already given the best advice that can be given for your situation. Keep exploring......Keep fighting.............Keep venting. |
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