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Topic: Tired (Read 913 times) |
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fubar
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I’m sorry I have to vent. Please pass if you can't stand pity parties. I hatin' it right now.
I am sitting here, month 18 chronic. 18th year clusterhead, first time chronic. I have had the ups, the downs, the despair, the lame-ass why-me episodes, the occasional elation of a PF moment brought on by expensive medications or Oxygen (than God for Oxygen), but I am getting so f’ing tired of going through this, I cry at the drop of a hat. I feel like I’ve been reduced to oatmeal. Maybe that’s the depakote, maybe it’s the 2 or 3 guaranteed bouts per day with the beast that is wearing me down. Hell, I broke a rib in January when I got hit with an attack, and that just added some cayenne flavor to every attack since that day.
One thing killing me right now is, I can’t really produce work like I should. I mean, with the medicine and the headaches, I am about ½ productive, and that’s just not OK. What the hell I can I do about that? Has anyone ever taken medical leave from this beast? I can’t imagine that something like CH could qualify you as disabled, but I swear I feel disabled right now. I try as hard as I can to deal with it, but it affects my productivity for sure. What do people do about that?
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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stevegeebe
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Re: Tired
« Reply #1 on: May 10th, 2003, 3:54am » |
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You've got to know that you are doing the best you can. I'm new here and after pouring over what is written here, I feel certain that many will have more to say. I can not imagine what you and other chronics are up against. You all must be the toughest sons of bitches on this little rock. You just continue to be the best you can.
Steve
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Jackie
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Re: Tired
« Reply #2 on: May 10th, 2003, 4:59am » |
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Fubar,
Reading your post is like looking at Blake. My heart goes out to you. I don't have a bunch to say except to tell you that there are better days ahead....I promise 
Hang in there....it sounds like you are and know that you've got folks thinking about you and sending good vibes your way.
HuggingFubarReallyTightJacks 
PS...you've got mail
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jonny
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Hang in there Bro, see if you can get the doc to try something other than Depakote. When I was on Norgesic forte it depressed the hell out of me, that was my lowest point in all these years.
It could be your meds dude....just a thought.
Vent all you want you earned it!!!!!
....................................jonny
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Bob_Johnson
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Re: Tired
« Reply #4 on: May 10th, 2003, 7:23am » |
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Not knowing your history, I may be spitting into the wind giving cheap advice--but: It's so clear from the medical literature that fairly common for meds to stop working (both abortives and preventives) after a period of success. Secondly, as you know from ch.com, there is no one drug/combination which works for everyone. As frustrating as it is, seems to me that we must be prepared to be open to trying new drugs/combinations & dosing. But that does require a sharp doc who is up to date and accommodating.
My bias is to try and keep up with the medical literature via National Library of Medicine (PubMed) site and, if the budget will tolerate it, one of the journals devoted to headache. Unless you have a headache specialist as your primary care giver, your doc will likely not be fully up to date. Self-interest motivates us to know more than our docs!
Lastly, have yor tried Zyprexa to abort? Worth a try at 5mg, then 10mg (if 5 doesn't work). Works for me in 20-minutes very consistently and far cheaper than the triptans. You will know withing one or two doses whether it works for you.
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Bob Johnson
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suzy617
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Re: Tired
« Reply #5 on: May 10th, 2003, 7:45am » |
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Fu, sorry your having to deal with this for so long without a break. I agree with Jonny thinking maybe its time you try a different med. Have you been to the neuro lately to discuss that?
Hope you catch a break soon. Hang in there.
Suzy
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When God measures men, He puts the tape around the heart, not the head.
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SommelierCH
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Re: Tired
« Reply #6 on: May 10th, 2003, 8:02am » |
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Give it up dude, lay it on us, Vent baby, Vent.
Please remember that some of us are pain free right now, you are not adding to our stress, this our time to help and try to give back. The shoe will be on the other foot, soon enough.
Now, for the soapbox: If we work to get Cluster Headaches declared a disease, all the job questions that you brought up, would be covered by the Federal Government. Research grants would appear and relief would be found by untold numbers of Clusterheads because the Insurance Co.’s and the Government infrastructure would be put on notice that we are not FUCKING MEEGRAINERS!!!! However, at this time I am still classified by my Ins. Co., as a meegrainer, so I might be prejudiced.
Fight the good fight, brother. And please believe that you never have to apologize for giving it up. There are many lurkers, out there (as I was) who will find solace in your vents. Our home here, can heal, in so many different ways, that someone’s negative, can give rise to another’s positive.
PFDAN,
David J.
P.S. Send me your address. Barbara’s handmade Healing Doll, is just what the Clusterhead ordered.
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ShariRae
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Re: Tired
« Reply #7 on: May 10th, 2003, 8:55am » |
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Fu...
Go ahead & vent.. and DON'T apologize for it...we all have times where we have to & what better place to do it than to the people who TRULY understand! Have you considered "shroom" therapy? I have never tried it, but those that have seem to have had good results. May be something to consider if you have exhausted all other routes..
Stay Strong & Fight The Fight
Huggzzz
Shari
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Only two defining forces have ever offered to die for you,
Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
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Georgia
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Re: Tired
« Reply #8 on: May 10th, 2003, 11:29am » |
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Oh Fu.  You brought tears to my eyes. I know it doesn't seem like much, but I KNOW, god I know, what you are feeling right now. My head has been pretty good, as far as a chronic ch'ers head goes, since I moved to Texas. Well...that has all changed now...and just a few nights ago, after another one of my psychotic episdoes, I sat Dennis down and told him almost exactly what you just said in your post. I told him that I am tired...tired of fighting the constant pain. I am totally consumed with fear...in the past, these fuckers have led me to a cliff, one foot over the edge, sudden death waiting below, and I CAN NOT go back there, I am not strong enough anymore, at least I don't feel it right now.
I feel like I am constantly on the edge of a total breakdown...everything makes me cry...the littlest things seem just completely overwhelming...I feel like the beast has robbed me of my control, as transient as it was, and with it he has taken my power, my strength...and all that is left is, as you said, a lump of oatmeal.
I am not taking Depakote. I am not taking any preventatives at all. So, no, I do not think thats what is making you feel like this.
Somewhere, in the distance, is a small glimmer of hope....the hope that there is something that will stop this pain. Every step gets us closer.
There are ch'ers who have gotten disability in the past...who left work for a little while or permenently. It is possible. It is not easy.
My point in all this: you are not alone in this place.
Peace, love, and total empathy,
Georgia
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Marc
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Re: Tired
« Reply #9 on: May 10th, 2003, 11:35am » |
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Sean,
It's hard to follow a post like Georgia's - but I want to add that I too understand. As I've told you before, you're made of the right stuff to keep fighting.
Marc
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JDH
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Re: Tired
« Reply #10 on: May 10th, 2003, 11:43am » |
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Fu,
Man you sound like you REALLY need a break from this. Wish I could take a few days worth for you.
A lot of us have been through this too and we're here for you. Hang in there brother, and vent all you want.
pfdan's to you,
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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oringkid
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Fu, I'm so sorry you are up against the wall. I would gladly trade you one of my pain free months and take one of your pain full months if I could to give you a break.
Have you ever tried the Prednisone and if so, did it work at all? If so, it could at least give you a break so you can regroup. Do try another med combo, you never know!
And yes, as Georgia said you can get short term or long term disability, but, it can be a long and difficult process.
Feel free to vent, cry and lean. We're here.
Sherry
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cootie
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sumday I'm gonna be sumbody........ ..
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Re: Tired
« Reply #12 on: May 10th, 2003, 12:00pm » |
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For you Fu..........love ya......wishin I could do more Pam-coots.....
Tears
It gently slides down my face,
from a well of many to one of none.
Is it happy?
Is it sad?
Is it pain?
Is it mad?
A lifetime of misery.
A moment of happiness.
A weekful of pain.
A flury of anger.
Today it holds all.
It gently slides down my face
and crashes in my heart.
It breaks a healed wound
and the pain takes over.
Slowly I crawl back out
and start over.
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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brain_cramps
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Re: Tired
« Reply #14 on: May 10th, 2003, 12:33pm » |
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Shit, Fu. It really sucks to hear what you're going through.
Being episodic, it is hard for me to relate completely, and harder to know what to say. ???
Like Sherry said "I would gladly trade you one of my pain free months and take one of your pain full months if I could to give you a break.", I have told friends that. If only it worked that way!!! 
Remember, you never have to apologize for venting around here. 
Hoping that you get a break,
grant
P.S. Pam - was that your's? 
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Mark C
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Onward through the fog.
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Re: Tired
« Reply #15 on: May 10th, 2003, 12:48pm » |
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Talk about ON TOPIC!
I am sorry about the shit storm you been sittin in Fu. I wish I could add some pearl of wisdom. I cannot add anything to the above posts...they are fantastic. This place is fucking amazing.....I wonder how many years of experience there are in this thread....hundreds I am sure.
I can add PF vibes your way and tell you I am with you. Hang on brother.....
PFDAN's
Mark
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cootie
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sumday I'm gonna be sumbody........ ..
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Re: Tired
« Reply #16 on: May 10th, 2003, 1:49pm » |
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Grant.....naw you kiddin....I can't remember the words ta roses are red poem half the time..... Poem illiterate Pam 
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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jonny
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FU dude,
I contacted a clusterhead that has gone through the disability thingy and asked what he did....heres what he said.
Jonny, no problem on the info. But I’ll leave it up to you to reword and post it on ch.com for him.
First off, I went to my neuro and told him I was tired and I was going to give up…..permanently. What this meant (and I can not over emphasize that I was being completely honest) was suicide. I truly was at the end of my rope! He then suggested I take a medical leave of absence (this is called FMLA or Family Medical Leave Act). FMLA has to be offered to everybody – it’s the law. The allotted time out of work is 12 weeks, but some places give more.
As soon as I went out, I filed for Social Security Disability. Those folks then send paperwork to the neuro for him/her to fill out. I can’t over emphasize this either: BE VERY DETAILED AND EXPLICIT IN EVERYTHING YOU FILL OUT. EVERYTHING. ALL OF THE DR. VISITS, DAILY DOSES OF MEDICATIONS (PREVENTATIVES AND ABORTIVES), WHAT THEIR SIDE EFFECTS ARE, HOW MUCH ABSENSE FROM WORK YOU’VE HAD IN THE PAST 3-6 MONTHS, ETC, ETC, ETC.). My disability status was awarded the first time around due to how severe my CH were, but some have to appeal a 2nd or 3rd time to get it to go through.
Damn, shit, fuck, double fuck and mother fuck. I truly hurt when I hear of someone else going through this CH shit…….please let me know if I can answer anything else.
Alan
p.s. had my neuro not suggested me taking a medical leave of absence, I would have brought the topic up to him.
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Linda_Howell
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Re: Tired
« Reply #18 on: May 10th, 2003, 3:06pm » |
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Fu,
I, too am so very sorry to hear of the depression and anger and tiredness that seems to go hand in hand with these headaches.
We're all listening to whatever you need to do, vent away, scream, yell and curse. Just KNOW that there is a rope to hang onto to here. We're all holding the other end for ya!
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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TomM
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HeyRe: Tired
« Reply #19 on: May 10th, 2003, 3:09pm » |
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Hey, FuBar. Hang in there, bro. You can muster the will to survive. You must.
TomM
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"Everyone should believe in something. I believe I'll go fishing."
--Thoreau--
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Sean_C
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Fu,
Sorry to hear about your bout with the beast but it should pass. I was fortunate I guess to have been chronic first then episodic, and I hope it stays that way, but your not at the end of your rope, EVER. Nothing is that bad, especially clusters because they do pass. Even at chronic I coped for ten years, I ate kip 10's for lunch and I would cope for a life time if I had too. this is what I suggest.
First I would see my Dr. and tell him my meds arn't working and we need to try something else. There are many drugs that are out there for you, hell try them all if you have too.
Second, I wouldn't mention anything about suicide to your doc for disability. Thats a permanent scar on your medical record and the reprocussions will come back to haunt you forever. Unless thats what you are talking about, which I didn't read it that way, don't do it.
Third, take some time off, maybe your stressed out and its triggering the beast. Find that trigger. Keep a journal, and write down as much of your day as possible.
I'm gonna cut it here, sorry guys. I'm getting carried away.
Fu it will pass, kick his MF ass
Seano'
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kim
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Re: Tired
« Reply #21 on: May 10th, 2003, 4:50pm » |
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Fu,
Can't talk bout it past 3-4 months, but what got me through was my pig-head and capacity for plain ole stubborn "not gonna get me" thinkin.....
No one can advise another how to get through, because it is such a personal journey....
but. YOU WILL GET THROUGH. ALL ON YOU OWN. and we will all be cheering you on in heart and mind.
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fubar
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Re: Tired
« Reply #22 on: May 10th, 2003, 5:27pm » |
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Wow. I read these post a few hours ago and was too overwhelmed to write. Even now I'm losing it again.
I know it won't kill me. It's the collateral damage that’s going to kill me. I have been trying like hell to maintain a house and a job. I’m not even going to talk the hell that is (was) my marriage. Wife moved out Friday (people, Do NOT assume this is a bad thing). She really just couldn’t handle CH on top of all of her other problems. She left me with the house and the kids, but I guess she’ll be getting our business which is the only real source of money since the State and the IRS get 70% of my paycheck (another nightmare story to tell you guys about someday, we have some great tax laws in this country). I am thrilled to no end that I don’t have to worry about her taking the kids, so I should be jumping up and down. Instead, I’m trying to figure out how to deal with my issues and not end up pushing a shopping cart. Medical leave would be cool if I didn’t have crushing loads of bills to pay. They don’t actually pay you while on leave.
Instead, I try to pretend I am capable of doing my job, when in fact they should fire my ass. Eventually, their patience is going to run out.
I’ve been through scores of medicines. The only things left that I haven’t tried are Lithium, Neurontin, and Prednisone. I have only found (limited) success with Verapamil (1 240mg in the morning, 1 ½ at night), and twice daily 500mg Depakote. The problem is, I know the Depakote makes me stupid, but it has drastically reduced the severity and frequency of attacks. Every time I try to taper off either med, I get a new dose of reality and I run back. I am literally scared to death (of death) at the thought of going back to ‘try’ a million ineffective treatments to search for something that works better or that doesn’t have side effects.
I just want a break. Like I said, I’m tired. And the things I have to do to keep up are piling up. I don’t know how I’m going to do it. I just know it’ll happen somehow. Knowing that doesn’t give me comfort for some reason.
The other thing is, if you actually qualify and start getting social security disability, don’t they kind of frown on you working for pay? I would go out of my fuckin mind if I couldn't work on projects for people to keep my brain engaged. It kind of overheats when sitting idle.
Thank you all for the thoughts and words. It really does help. I haven’t cried that hard since I became convinced Sandy (the one who got the miracle lung transplant) was going to die. FYI, she’s doing well these days. It’s a long road for her too, but she’s still alive and I thank all of you for thinking about her back when it was needed. You may have been the ‘force’ that made it possible for her to be alive today.
-Fu
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| « Last Edit: May 10th, 2003, 5:40pm by fubar » |
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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kim
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Re: Tired
« Reply #23 on: May 10th, 2003, 5:38pm » |
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Hey Fu, there is NO SUCH THING AS A DEAD END.
You need only keep waking (riding, running, WHATEVER! ), and you will find a new and good street.
Thinkin of ya. If get too tired take kids to NY - (we can BBQ-  )!!! -
..........Plus ya know I'll have tons of books to talk bout...... ....
everything is a blink. Live and make as much happy noise as ya can -= b4 ya no it - its over. 
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oringkid
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Fu, see if your doc will give you a prednisone taper? I think its called that. You start at high dose and taper down over a specific period of time. It should give you a break while you are on it. It really is worth a try. Steroids can have some weird side effects on some, although I didn't notice any, but if you are on a say, 2 or 3 week taper (can't remember how long mine was) you won't have to deal with them for too long.
If it works, it could be the break you need.
Pullin' for you and great to hear about Sandy, I remember when you posted about her!
Sherry
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