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Topic: Self pity, whining and bitching. Feel free to skip (Read 692 times) |
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phydeaux
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Self pity, whining and bitching. Feel free to skip
« on: Jan 19th, 2006, 11:33pm » |
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Warning:
This post is filled with self pity, and plenty of whining. Feel free to skip it. I just have to vent a little somewhere...
I have had chronic CH for just over four years now. O2 has no effect. In fact, to date, only one preventative worked at all. For almost five months or so I lived the good life with Verapamil.
Then the side effects put me in the hospital for 5 or 6 days. No more Verapamil.Back to the pain.
Since then. no preventatives or abortative has had any effect worth mentioning at all. I'm reduced to regular trips to the ER for pain meds, and then the joy of the next day's rebound. On a daily basis, I have several hours of Kip scale minimum 4 fun. Most days I have at least two Kip 8 to 10 events.
In the last four weeks, I've been to the ER 7 times, and three of those required a return visit after two or three hours, as the 4mg of Dilaudid didn't relieve the pain. Actiq (at 1200 MCG) is a daily thing.
My life sux0rs.
I'm exhausted from the daily battle. My medical bills have me on the ragged edge of filing BK. My wife is on the verge of moving out. Really REALLY on the verge, she had her mom setup the spare bedroom at Mom's place, and has clothes for her and the kids there.
My work is suffering extensively, to the point where I'm almost out of a job.
My kids hardly know me, as I stay in the bedroom alot so I don't growl at them. And all the meds make me a different person anyway. That's one of the reasons my wife is leaving.
I suffer from long bouts of extreme depression. I have NO intention of killing myself, but often, at the peak of an attack, or after a long day of dealing with it, I can understand the value of a well placed bullet, just to put an end to it.
My doc (Raskin, at UCSF) has me meeting with the surgeon for a meeting to discuss the electrode surgery. Scares the hell out of me.
Kids that are scared of me, marriage foundering, constant pain and suffering. Just sucks. I'm out of happy thoughts.
And this doesn't EVEN really begin to get across the suckiness of it all. But I know those of you who have bored enough to read this far understand, probably all too well.
I guess that's it. I just felt I had to whine somewhere.
These are not the droids your lookin for, you may go about your business.
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My PC glitched, and this got posted twice. Sorry, I deleted the other one though...
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| « Last Edit: Jan 19th, 2006, 11:36pm by phydeaux » |
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BC_Battler
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Stay strong
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Re: Self pity, whining and bitching. Feel free to
« Reply #1 on: Jan 20th, 2006, 12:00am » |
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I'm really, really sorry man. I thought I had it rough - instead of saying a prayer that my own headaches will go away, tonight I'll say one for you and your family instead.
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zwibbs/Scott
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Stay Strong !!!
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Re: Self pity, whining and bitching. Feel free to
« Reply #2 on: Jan 20th, 2006, 12:52am » |
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Ditto--I'll be keeping you in my paryers . When you least expect it things will get better. Keep your faith strong---especially in yourself. To alot of people you might be their hero.
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Barry_T_Coles
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Re: Self pity, whining and bitching. Feel free to
« Reply #3 on: Jan 20th, 2006, 12:55am » |
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Vent all you wan't friend, thats what we are here for.
Hope thing's start looking up for you.
Kind Regards
Barry
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gobby
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Re: Self pity, whining and bitching. Feel free to
« Reply #4 on: Jan 20th, 2006, 1:17am » |
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Damn I wish they could find a cure for these things!! Dude I wish there was something I could do to help.  Somehow you'll get through this........Keep Fighting and vent all you want.
May the Force be with You!!!!
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Self pity, whining and bitching. Feel free to
« Reply #6 on: Jan 20th, 2006, 3:11am » |
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I'm so, so sorry that the beast is giving you hard time right now... 
I am glad that you did get some relief from verapamil, that helped me. I do recognise many of the feelings you're feeling... I'm chronic myself. I know what it's like to be depressed because of ch. It sucks big time. 
I wish I could suggest that try this, try that and ch will vanish... I wish it would be that simple! I tried so many things... ice cream, magnesium, ice, hot shower, cold shower, driking lots of water, yoga. Some helped a little, some didn't do a thing. And naturally, lots of meds.
All I'm trying to say is, that don't lose your hope. I nearly lost mine, but then meds worked. There are things you can still try, I'm sure of it. But you did the right thing when you wrote to us. This is the place where you can vent as much as you want about ch. We get it.
I hope you don't mind if I'll say a prayer for you... 
Best wishes & PF time asap,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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BarbaraD
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Re: Self pity, whining and bitching. Feel free to
« Reply #7 on: Jan 20th, 2006, 6:04am » |
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Been right where you are now....
Then one day (out of the clean blue) and thanks to this MB, a guy in Denver mentioned a drug study that he was involved in up there. (Topamax). I'd never heard of it and called my neuro about it (only thing I hadn't tried at the time). He'd read something about it and we tried it. Lo and behold it actually worked. My point being - THERE is hope!
I'm still chronic and I STILL have headaches, but I'm so much better now than I was back in 99 and lead a half way normal life today.
I really think being a chronic Cher is like everything else - you have to go thru the "stages" till you finally come to the "acceptance" stage of it. When you get to the acceptance stage then you can go on with your life. You quit apologizing for having them and go on and live with it. Someday they'll find the cause and maybe a cure, but that day is not today, so accept what life gives you and make the most of it.
The good news is - you've got this MB and people who DO understand what you're going thru (I didn't have that when I went thru my darkest hour - it wasnt up and running back then), so you have a place to go when things get too bad. That's a big plus. Go ahead and vent, whine, rave. There's always someone here to understand.
Hugs BD
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Richr8
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Only episodic here..
« Reply #8 on: Jan 20th, 2006, 7:40am » |
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..and only recently found this board , but after this bout I'll be thinking about and praying for all that have the misfortune of having to look for this place. I had no iidea so many sufffered. My sinceresest heartfelt best wishes that you find peace. I too recently switched to Topamax and have nothing to report, but continue to look for relief from this horrible condition. If I suffered as you, I would say I would'nt hesitate to look into all alternatives including cluster busters, surgery, RF, and laser techniques, I have already ordered a cluster mask because the miracle of O2 works for me on many attacks. Any improvement on that is welcome.
Good luck my friend, and many PF moments.
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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MJ
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Re: Self pity, whining and bitching. Feel free to
« Reply #9 on: Jan 20th, 2006, 11:22am » |
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mornin phydeaux.
Though my longest cycles only lasted just over 3 years I can certainly relate to where your at.
During my times no doc nor med could help me. My situation went much like yours the last long cycle.
I had no days off and 8-12 hits each and every day seldom below a level 10. That sucked. Marriage went to hell etc..etc..
I went to extremes to find relief rather than succumb. I found a natural adrenaline rush to be one of the greatest abortives of all times but It was experimentation with illegal drugs that finally broke my cycle wich I am not reccomending. I never took another drug for 10 or more years after that for CH except ephedrine to keep me alert wich I am also not reccomending.
This is partially the reason I turned to the clusterbusters treatments this cycle with RC seeds and the reason I was willing to stick with it trying different doses. Its worth a shot if you havent tried it, even if you just get a couple days off to re-assess the situation. Seeds still havent totally busted my cycle but definately have made life a lot, lot easier. And the side effects are very minimal, mood alterations are none so far.
Be strong.
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MJ
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nani
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Re: Self pity, whining and bitching. Feel free to
« Reply #10 on: Jan 20th, 2006, 11:30am » |
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We all need a good whine now and then. It's cleansing and a great way to dump 500 lbs of garbage.
Don't despair, there are still things out there that may work. Keep looking.
Pain and depression free wishes, nani
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Cathi04
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Re: Self pity, whining and bitching. Feel free to
« Reply #11 on: Jan 20th, 2006, 12:07pm » |
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phydeaux,
It's soo hard to see you suffering this way! I'm gld, however, that you spilled it all out!
Eric already mentioned the things I had in mind..MOSTLY, so many people have tried 02 for the second time, with help! Amazingly, with the clustermasx, or some special help in the controlled breathing and focus they find the 02 works!
I am constantly reminded that life for a clusterhead, is what happens between hits....... please, try to focus on that time, even if it seems impossible.
And.. hang on....you've got friends......
Big hugs,
Cathi
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phydeaux
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And I, of course, am innocent of all but malice.
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Re: Self pity, whining and bitching. Feel free to
« Reply #12 on: Jan 20th, 2006, 1:07pm » |
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on Jan 20th, 2006, 11:30am, nani wrote:We all need a good whine now and then. It's cleansing and a great way to dump 500 lbs of garbage.
Don't despair, there are still things out there that may work. Keep looking.
Pain and depression free wishes, nani |
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Thanks to all for your good thoughts. Nani hit it best, i think, BUWAHAHAHA!!
Got cheeze for my whine?!?!
Still, some good advice. I'll try the better mask (I currently have just the little tube things, and they irritate the hell out of my nose anyway!) And those places you mention, E-Double.
All your good thoughts, in a wierd way, helps a little. Much love to you all...
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