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Cluster Headache Help and Support >> Cluster Headache Specific >> I hoped I'd never have to come back here...
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Message started by MathenyMan on Jun 20th, 2008 at 11:33pm

Title: I hoped I'd never have to come back here...
Post by MathenyMan on Jun 20th, 2008 at 11:33pm
But here I am. This time with a twist! I no longer have medical insurance. Why they call these things suicide headaches becomes more evident everyday. I have a few VERY SMALL oxygen tanks left, and the company that delivers them calls me everyday, with a not so friendly lady, to say the least, all the time. I have one more imitrex shot. Still, I'm scared to use it, both because I don't want a "payback" headache, and just because I know its my last one, and it should be for emergencies. That alone has been driving me crazy. To have the 100% cure, but not using it. Other than that, I have 2 jobs, that I may be losing because of these things in the near future...Let me see what else...I just got my car fixed (yay), but I cant drive it now that I'm back in cycle (aww). Also, fixing it emptied my checking account, so even if I did want to pay out the pocket for imitrex or topamax (the only 2 that work for me) I cant! I can no longer afford it. The next thing I'm gonna try is RC seeds but honestly, I dont think they'll work, since the prescription vasoconstrictors never did. I did meet a clusterhead today, that was cool. I never met one before. It was shocking actually that anyone had even heard of em.
    Man, I tell you, I'd literally give my right arm for the cure. I'd even give up a sense or 2. This sucks. Looks like I'm about to dip into some extreme depression. I did before, and I had medical insurance! Let's see how things are this year without. I wouldn't say that I'm suicidal, but if you asked me how much I valued life at this point, I could tell you I envy those that got an early out. I'm totally against suicide, but if I guy put a gun to my head right now, I cant say that I'd put up much of a fight. I don't know how bad everyone else's is, but ALL of mine are 8+ and these next few months are gonna suck. Even though I've quit cigarettes and drinking all together since my last cycle I do know that my WORST headaches have always been the untreated ones. I really feel bad for my mom...she has to watch me suffer, and I know it kills her inside.

I guess that was all I needed to get off my chest for now.

Best wishes to everyone. Hope you don't have the same luck as me.

Adam Matheny
Sacramento, CA

Title: Re: I hoped I'd never have to come back here...
Post by tuck on Jun 20th, 2008 at 11:51pm
Adam, I think at one time or another most of us have been where you are now. depression has got to be the beasts little brother, he seems to tag along wherever big -brother goes. I know its hard, Hell, we ALL know its hard, but hang in there kid, you have found the right place to vent, we ALL understand. just remember, we are here for ya, and you can and WILL whip this thing!!!!! They dont last forever and they dont kill us!!!!! (allthough sometimes we wish they would). Remember , there are alot of little tricks some of us use to fight the beast, and alot are cheap. things like melatonin and red-bull. Brisk exercise, strong coffee, etc. I know they dont work for us all but maybe you can find one that does for you. DONT GIVE UP TRYING!!!!!!  Good luck and God bless,   Tuck          P.S. give your mom a BIG hug,, it wont help with the headache,,,, but it wont hurt either!!!!

Title: Re: I hoped I'd never have to come back here...
Post by debOUCH on Jun 21st, 2008 at 12:00am
adam.....................u have a right to have a pity party!  HOWEVER..........................you can & will beat this!!!! stay in the POSITIVE.......tho it may be difficult, you WILL get through!!!!!!!!!!!!!!!!!!!!i FIRMLY believe mind over matter...........................tho difficult to handle now in cycle, you WILL prevail.....yeah, it SUCKS big time, but, believe it or not, you will get through.....................................vent all u want, but remember life is so valuable.........CARPE DIEM...........................tho it does not seem posssible @ this moment, it will...............PFDAN to u and  [smiley=hug.gif]
deb, from long island

Title: Re: I hoped I'd never have to come back here...
Post by nani on Jun 21st, 2008 at 12:20am
Hi Adam, sorry you're having such a hard time.

I was uninsured for a few years... it sucks, but...there are ways to control your CH yourself. I own an oxygen tank that I purchased from a welder supply. I got a 540 regulator from ebay and a mask from a med supply. Here's an even better mask you can build yourself:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Energy drinks can be used (alone or with oxygen) as an abortive.

Read all you can here:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
Read the LSA FAQ on the upper right.

Good luck and welcome back.

Title: Re: I hoped I'd never have to come back here...
Post by MathenyMan on Jun 21st, 2008 at 3:07am
I'm hangin in there for now...I just drank a TON of water, and will drink nothing else for the time being. I must be fast here though, I think I heard the beast...He always sits and waits to see if I'm doing something productive or fun so he can ruin it.

Title: Re: I hoped I'd never have to come back here...
Post by Chappy on Jun 21st, 2008 at 5:10am
Adam,

I can relate to what you're going through.  I spent $30k last year just to get my diagnosis after getting to the point where I couldn't work any longer with 8-20 hits a day, and now I'm watching the business I spent 10 years of 16-hour days building, with 15 employees when I left, slowly die without me.  If I was cured tomorrow, I'd spend the rest of my life paying off debt.  My wife tries her best, but most days just seems to hate me.  I have 2 boys, 8 and 6, who probably can't remember when I was able to wrestle with them, or when I had more than 1 or 2 hours a day pain free.

But you know what?  Just when I reached what I thought were the edges of sanity, and the depths of depression, I found strength in places deep inside of myself, and somehow was able to fight back.  I now spend 14 of my 16 waking hours in pain, with 4 1.5-hour kip 7-9s every night, but somehow have figured out how to be happy, laugh, and enjoy what I have in between.

I also think you should give the rc seeds a serious try, and there are other less-expensive remedies like kudzu that some people swear by.  Topomax gave me a few days of relief, but I quickly built tolerance, and nothing else worked.  RC seeds have given me 3-5 days pf quite a few times, better than anything else so far, and they're very affordable.  They're not just meant to be vasoconstrictors like ergots - they act on receptors in your brain and continue to be effective even when the medicine has long left your body.  Feel free to PM me if you have any questions.

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