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elpo

busting but sick of doing this by myself

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Ive been here for a few years, i think my last username was elpo. Anyway, like all of you i've been down a long hard road. I'm female so that means that everything including ingrown toenails have been blamed on my menstrual cycle. I've had cluster headaches for 16 years but just diagnosed 9 years ago after the ER doc witnessed the lacrimation and dilated pupil during an attack that i went to the ER for. I only go when i can't stand it anymore, like the rest of you - near the end after i'm limp from pain and brainless and can't take care of myself anymore. They give me nerve blocks and opiods and oxygen, but nothing stops it, the pain continues, it bears down. Before that, i was sent for a number of mri(s) but just didn't hear back. I guess my brain looked normal, no guinea pig here, no case to study to publish. 

 

After 11 years, I was on a govt pension and completely a mess. I should note that i have wonderful parents, they saw my pain but felt helpless. My neuro put me on a host of meds, they either re-started my cycle or brought on a new one. Eventually, i decided that no meds worked, and in fact, they made it worse. This was after 12 years of agony, by myself. I've had boyfriends, etc., but lets face it, the majority of us do this all by ourselves. 

 

Now that i've been busting, i've gotten off the pension, i've got a great job - one i've re-trained for during my illness - and one that i've maintained for almost 2 years now. they are accommodating, they are wonderful . it is my dream job, i'm doing everything i can to show them that i am a hard worker. I bust every week, more or less depending on what i feel i can handle. But i knew the day would come that it wouldn't matter. It would get me. 

 

And now it's here. i'm sitting in front of the air conditioner at 1255pm and the next night at 955pm. the pain has returned, after many months i knew it would find me. i sit alone. my eye cries, i am in unbearable pain. I am 35 with no children, no little ones to love me. I am trying to be strong. but still I sit here, i sit here, i sit, rocking in agony, thinking of the life that i deserve. Trying my hardest not to think of those children, that life i should have. Trying to think of nothing, because thinking of something makes the pain so much worse.

 

I won't give up because i have people who love me. but still, I'm alone, i'm so lonely with this disease. I'm 35 but i feel like i'm 100 year old. And i may as well be.

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G'evenin elpo!

So sorry the Beast is having his way with you! Where are you located? I ask because our annual conference is next week in Austin!

So, since you didn't mention it, do you have hi flow oxygen?

DD

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So so sorry, elpo.  I know many people here (even some who do have people around them) can appreciate the terrible aloneness.

Since busting has been so good for you, I think many would suggest that sometimes when one busting substance seems to suddenly lose effectiveness, another one can still be effective. So, if you were using M, maybe seeds would work. 

Like Denny said, if you don't have high-flow O2, you should.  And if O2 was one of those meds that didn't work for you in the past, that might have been because the flow rate was too low, or you didn't have a good-enough mask, or even that you weren't using the best breathing method.

Stay in touch, please.

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Elpo, sorry to hear this.

Try using different breathing techniques, like taking a deep breath and hold it for 10 or 15 seconds exhale hard and deep breathand hold it again. This works beat for me. Keep trying until you find a flow rate and breathing technique that works for you. Good luck.

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hello elpo,hope you are feeling better,but try remember,you have got through the worse years like me and all us clusterheads! without

any hope whatsoever ,but with my personal battle with the beast the, discovery of mm and lsd has made my life liveable.also being a father of three

wonderful children,having my kids see me when in cluster hurts me even more knowing they are hurting for me!so try not to feel so bad

about that matter,we are all so lonely with this disorder,so hope you can find some comfort on this site,as i do!

your not totally alone elpo"talk to us"!hope this message finds you well.!

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elpo I know how you feel. I have been suffering for 32 yrs with this condition and sometimes I feel I can't do it anymore. My son moved out 2 yrs ago to St Louis and now I live alone in Louisiana. I have family near by but when this beast strikes it is unbearable sometimes. I won't give up --never-- too much to live for . I will beat this 1 ha at a time. My neurologist had me on many many meds that didn't work. Can't use Imitrex anymore. MM have helped and put me in remission for 1 yr after busting when I can get them. I work in the medical field so I keep a low profile on non traditional treatments. I seem to only visit this site after I start my LIVING HELL. I now resolve to be here on a regular basis to stay ahead of this BS condition. I am currently in my cycle and in desperate need of just a little sleep and the weather to get right for some meds. Hope all gets better for you. Hang in there. I will check out more posts for some types of relief for now

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