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Clusterman59

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

VENTING TODAY!!
Sep 22^nd, 2012 at 12:46pm

Hey Fellow Clusterheads!
Impatience!! You would think after 35 years of these God Dam headaches I would have more patience with them....BUT I DON'T!! I think it's just the opposite!!! I have started this new med (Depakote) along with Topamax that I have been taking for about a year and feel NOTHING!!! Except like I drank a fifth of fuckin Rum!!! I don''t drink by the way and I don't know how long I am supposed to keep fucking WAITING!!! I have never and I mean NEVER had relief from my Clusters on a preventative basis!!!!

15 years ago I almost died from having a perforated intestine and full blown peritonitis and then almost died 7 more times over a 10 year period due to infection complications.
I suffer tremendous nerve damage and pain, lost 4 feet of my large intestine and my left testicle due to botched surgeries and now live at a 5 on the pain scale just from all that shit never mind the CH!!.

Can you imagine waking up from surgery and having a fucking CH!! Now I am at the point where just don't give a shit anymore!!! It is my opinion that I was put here on this earth to suffer. Whether it was back breaking work all my life to CH to 17 operations.....IT JUST NEVER ENDS!!!
Please don't take this as Whining because I am not a fuckin whiner!! (I love hard work by the way!!) Up until I found this online family a month ago I have never said a word to anyone EVER about my problems with pain other than my immediate family or doctors directly involved with my treatment and they don't have a clue what it is to suffer.

I take that back....My ex wife of 17 years knew my pain and that is why she said she went to the bottle left my son and I and went to Florida with some other guy. I guess I can't blame her he was pain free?......Johnny

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« Last Edit: Sep 26^th, 2012 at 9:15am by Clusterman59 »

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Mike NZ

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
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Re: VENTING TODAY!!
Reply #1 - Sep 22^nd, 2012 at 5:49pm

It's easy to see and understand your frustration. However it is only in the last few weeks that you've started to get really good neurology care as you've documented in your posts. For preventives it can take multiple weeks for a dose level to become effective so it really can be a case of needing some patience, as hard as it is, for things to happen.

Stick with it, re-read some of your own posts where you have explained how things are improving.

I just wish you get the relief as soon as possible.

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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: VENTING TODAY!! Reply #2 - Sep 23^rd, 2012 at 7:36pm I'm so sorry Johnny. I wish there was some way I could take some hits for you, so you're not so overwhelmed.
Back to top	Diseases can be our spiritual flat tires - disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way. ~Bernie S. Siegel IP Logged

BarbaraD

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: VENTING TODAY!!
Reply #3 - Sep 24^th, 2012 at 6:00am

Johnny, I can relate to your pain and frustration. I've stood on the back porch and screamed to God to kill me NOW! But it DID pass and I'm still here..

I think the secret is to LIVE in between hits. Vent when they get too bad.. we DO understand here cause we've all been there.

Have you got O2.. that's always been my help.. When the CH first starts, if I can get to the O2, I can usually abort within mintues. A can of Red Bull (or other energy drink) if I'm out somewhere away from my O2 will sometimes abort an attack. You might try this.

And Melatonin at night for the night hits. I very SELDOM get a hit during the night since I started the Melatonin back about 10 years ago. That gives you the "rest" you need to fight during the day. It took me three tries before it began to work and about two weeks on it before I "saw" it working. And when you wake up - GET UP.. don't lay there and wait for a hit (and you will get one if you lay there - trust me on this one).

Hope you're doing better and have some PF time.. Kiss

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What don't kill ya, Makes ya stronger!

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: VENTING TODAY!! Reply #4 - Sep 24^th, 2012 at 11:56am Amen, Barbara! blessings. lance
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Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: VENTING TODAY!! Reply #5 - Sep 25^th, 2012 at 2:27pm Very sound feedback when very much needed my friends!! Much appreciated.......Johnny
Back to top	Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

ChefChris CH.com Veteran Offline Posts: 245 Virginia Beach, Va Gender:	Re: VENTING TODAY!! Reply #6 - Sep 25^th, 2012 at 5:49pm ive lost a few girlfriends and one wife due to these fucking headaches. the one im with at the moment says its no big deal, but i think she'll be sick of it soon. trips to the ER and shit. i feel you on this one.
Back to top	life is great clean. thanks NA and rehab. clean date August 4, 2010 IP Logged

Clusterman59 CH.com Veteran Offline Pain free is AWESOME!! Posts: 237 San Diego, California Gender:	Re: VENTING TODAY!! Reply #7 - Sep 28^th, 2012 at 8:02am Yeah Chris, Unfortunately When the the goin gets tough the people you need most split!!, Sorry to hear about your troubles This world sucks sometimes but I do believe we do have a soul mate out there somewhere cause if we didn't believe that were all fucked.....Johnny
Back to top	Gaining knowledge and obtaining an education about cluster headaches is the key to success to shutting down the beast. The Vitamin D3 Anti inflammatory Regimen is one of the best treatments ever! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: VENTING TODAY!! Reply #8 - Sep 28^th, 2012 at 10:11am Hang in there Chris, my wife is the one that found this board for me and saved my sanity. We just celebrated our 30th wedding anniversary, there's tough ones out there, I was lucky enough to find one. Maybe your current gal will be the one stroing enough to hang with it. Joe
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thbaker41

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I Love CH.com!

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Bowlinggreen Kentucky
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Re: VENTING TODAY!!
Reply #9 - Oct 6^th, 2012 at 7:04am

Man Chris I know how ya feel brother along with my CH I have degenerative disk in my neck so it locks up on me all the time and well if I am not getting stuck in the eyeball with a needle by the ch i get to experience the wonderful sensation of what I can only compare it to is having a bigger needle rammed in my ear all the way down my jar and shoulder and stops at my fingers. So yep seems ch could give us a break since other crap is messed up already. I found this sight myself not to long ago and these folks on here have been a blessing. For so long my docs kept telling me my headaches were caused from my neck injury and I would just come home and cry thinking I am just screwed and dealing with idiots. This went on for so many years and went through so many women but back then didnt know it was CH so they just thought I was crazy I guess. And one other thing it's ok to get pissed and you were whineing just a little but man sounds like your one tough SOB to me to have lived your life with all the pain your in just think it cant get no more painful well hope your ok though man take care

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Jrcox CH.com Veteran Offline I Love CH.com! Posts: 123 FARMINGTON, MN Gender:	Re: VENTING TODAY!! Reply #10 - Oct 8^th, 2012 at 1:47am Yes im back again. Johny stay tuff. I know i say this and then I vent ten minutes later at how, I just started getting my shadows and now afraid to sleep. We are in this together. Hearing your vent helps me as well.
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AppleNutClusters

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2012, Year of the Honey
Badger

Posts: 261
Richmond, Virgina, USA
Gender: male

Re: VENTING TODAY!!
Reply #11 - Oct 10^th, 2012 at 9:09pm

Well I'm frankly fucking glad you posted that, Johnny, because it saved me the trouble of doing the same. Wink

I'm also in a bad spot right now, newly chronic and going through a fall peak. I can even commiserate on the relationships, only it was a miserable ex who gave me a concussion and split. But this ain't about my crap, it's about yours. Can you reach out to a parent, aunt, uncle, sibling, adult child? I find that when I'm doing the worst, I forget to ask for help or just crawl under a rock. Sometimes it seems like the world is reduced to an oxygen mask and the sickly taste of Monster.

I'm thinking we just need to put our inhuman pain tolerance to good use. Hm... sideshow act? Bed of nails feels downright comfy after a visit from the Beast. Cheesy

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Clusterman59

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: VENTING TODAY!!
Reply #12 - Oct 12^th, 2012 at 1:37pm

Sorry for not getting back to you sooner,
YES!! Right now a fucking bed of nails sounds very comfy!!
It is good to vent and much needed especially for people like us who deal with horrific pain on a daily basis.
I'm really glad that my venting helped a few and believe me I feel more coming on soon as my new meds were a complete failure!! But what else can life throw at me? PLEANTY I'm sure!
CH has made me/us very strong tuff people and able to handle things that would put most in the bin. But one thing for sure is that we have to let loose every now and then and and say those 4 letter words that are always at the tip of our tounge......pfds.......Johnny Wink

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Jrcox CH.com Veteran Offline I Love CH.com! Posts: 123 FARMINGTON, MN Gender:	Re: VENTING TODAY!! Reply #13 - Oct 12^th, 2012 at 1:58pm I am the point of knowing it is going to start. Small shadows, depression, Scared. Haven't even had a taste of a big attack yet. My remission this time was two years. Going to be long 6 weeks. FUck
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Clusterman59

CH.com Veteran

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Pain free is AWESOME!!

Posts: 237
San Diego, California
Gender: male

Re: VENTING TODAY!!
Reply #14 - Oct 12^th, 2012 at 2:27pm

Hey my Cluster friend!
It is a sickening feeling knowing they are coming on, my last and only remission was when I was about 30 and I am 53 now it lasted 3 years but I still remember clearly when they came back. It was bliss to have been pain free but to suffer these God Dam things period is our curse and we must rely on each other to make it through the dark days and enjoy the pain free ones. They didn't have sites like these in the past so take full advantage of VENTING!! Talk to these guys about your meds, I don't know if what you used before worked for you but some things have changed in the last 2 years. I am here for you to as a fellow clusterhead to talk to anytime you like and please feel free! I was out of the "Loop" for along time and am also getting informed on some new things like vitamin D3 therapy....Talk to Pete Batch about that one here. I think that is going to be my own next attempt to stop these CH's.....Nuff said for now....Am here for ya bro!......Johnny

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