Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2003 Posts >> Tired
        
(Message started by: fubar on May 10th, 2003, 3:21am)
Title: Tired
Post by fubar on May 10th, 2003, 3:21am
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
Title: Re: Tired
Post by stevegeebe on May 10th, 2003, 3:54am
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
Title: Re: Tired
Post by Jackie on May 10th, 2003, 4:59am
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 8)

PS...you've got mail  
Title: Re: Tired
Post by jonny on May 10th, 2003, 6:06am
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
Title: Re: Tired
Post by Bob_Johnson on May 10th, 2003, 7:23am
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.
Title: Re: Tired
Post by suzy617 on May 10th, 2003, 7:45am
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
Title: Re: Tired
Post by SommelierCH on May 10th, 2003, 8:02am
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.  
Title: Re: Tired
Post by ShariRae on May 10th, 2003, 8:55am
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
Title: Re: Tired
Post by Georgia on May 10th, 2003, 11:29am
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
Title: Re: Tired
Post by Marc on May 10th, 2003, 11:35am
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
Title: Re: Tired
Post by JDH on May 10th, 2003, 11:43am
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
Title: Re: Tired
Post by oringkid on May 10th, 2003, 11:48am
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
Title: Re: Tired
Post by cootie on May 10th, 2003, 12:00pm
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.
Title: Re: Tired
Post by Mastifflvr28 on May 10th, 2003, 12:25pm
VIBES going up FU,
I hope you find your light soon...
Take care,
Mast
Title: Re: Tired
Post by brain_cramps on May 10th, 2003, 12:33pm
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?    ;)
Title: Re: Tired
Post by Mark C on May 10th, 2003, 12:48pm
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  
Title: Re: Tired
Post by cootie on May 10th, 2003, 1:49pm
Grant.....naw you kiddin....I can't remember the words ta roses are red poem half the time..... ;) ;) ;) Poem illiterate Pam  ;D
Title: Re: Tired
Post by jonny on May 10th, 2003, 2:09pm
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.
Title: Re: Tired
Post by Linda_Howell on May 10th, 2003, 3:06pm

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
Title: HeyRe: Tired
Post by TomM on May 10th, 2003, 3:09pm
Hey, FuBar. Hang in there, bro. You can muster the will to survive. You must.
TomM 8)
Title: Re: Tired
Post by Sean_C on May 10th, 2003, 3:37pm
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'
Title: Re: Tired
Post by kim on May 10th, 2003, 4:50pm
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. :)
Title: Re: Tired
Post by fubar on May 10th, 2003, 5:27pm
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
Title: Re: Tired
Post by kim on May 10th, 2003, 5:38pm
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- :D)!!! -
..........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. :-*
Title: Re: Tired
Post by oringkid on May 10th, 2003, 5:45pm
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
Title: Re: Tired
Post by SFChris on May 10th, 2003, 5:49pm
Shawn,

Dude - sorry to hear that you are getting hit so hard - and all the other crap you are dealing with.   How often are you commuting to the office?  Let's do the lunch thing when you are in Santa Clara.  

Take care,
Chris
Title: Re: Tired
Post by Ree on May 10th, 2003, 5:59pm
Sorry Fu  Im a little late with the words and everyone has alread said what I would have said just know I am thinking of you too...sorry you have to go through this and from one "witness" as Anthem put it... I know what you go through... good thoughts and prayers going out to you... hang in there better days a coming.. love ya ree
Title: Re: Tired
Post by Wendy the Brit on May 10th, 2003, 6:29pm
Fu

Sorry, like Ree, a bit late here.
We've never spoken but I feel like I know you. I'm Wendy the Brit, pleased to meet you.

Vibes, kisses, and a cyber neck rub from over the pond and a big hug for your kids.
Hang tough, life will get better.

W the B
Title: Re: Tired
Post by fubar on May 10th, 2003, 6:53pm

Wendy,

I used to live in Windsor.  I was there for about 14 months while I worked in lovely Slough for my company.  It cracks me up to watch "The Office" now.  Fucking brilliant comedy, and they really show Slough at it's best.  I just wish they had some shots from inside the shopping mall off High Street.  I'm convinced there is a genetic experiment going on there (Slough) and it's gone horribly wrong.

Nice to meet you too.   8)

-Fu
Title: Re: Tired
Post by Wendy the Brit on May 10th, 2003, 7:02pm
Hey Fu!!! :D :D :D

Wow! I didn't know The Office had got to the States. It's the funniest thing I've seen in years. Do Americans who haven't lived in England get the jokes do you think?

And poor you. Not a good impression to get of the UK. Slough is the pits, crap name, crap place. I live quite near, but NEVER go there. Maidenhead's not much bloody better.
Come and visit 30 minutes away where I live in Bucks, it's much nicer!

W the B

P.S. Have a great video clip of Brent dancing which I will try and send you if I can. That'll cheer you up!
Title: Re: Tired
Post by Mark C on May 10th, 2003, 7:07pm
Hey Fu,
Give the Methylprednisolone (http://www.rxlist.com/cgi/generic/methprd.htm) a shot. Before Trex it was the only thing to give me a break...even if it was just for a few days at a time. As the dose taperd it tended to become less effective. Good luck brother...hang on.


PFDAN's
Mark
Title: Re: Tired
Post by fubar on May 10th, 2003, 7:09pm
I'm not sure most Americans get it, but there is a lot of on-the-surface humor to keep them satisfied.  The funniest bits are, in fine British fashion, not obvious.  The Office is on BBCA so we do get to see it.

I liked Maidenhead and Buck.  Slough was just work, and everyone knew that Slough was anything but representitive.

If I get back to the UK I'll knock you up, as they say.   ;D

You can't really say that here.   :o

-Fu
Title: Re: Tired
Post by Wendy the Brit on May 10th, 2003, 7:20pm
Knock away Fu! (Husband doesn't visit this board!)

American Clusterheads welcome in Cheddington, Bucks! We have spare rooms (I live in a converted Victorian Pub) and the view at the back of the house from the deck is a Rothschild stately home. Is that traditional British enough for American visitors?

Hope the clip worked and put a well deserved smile on your face.

W the B
Title: Re: Tired
Post by Miklos on May 10th, 2003, 7:52pm
Late. to post. Not chronic.

During the late '80s, I was going through a really bad episode. Wife had to go to California for two weeks on a family emergency. We had two junior high students, 7th and 9th. I was also premiering a two week highly technical class (bits and bytes) for IBM. Headaches during the day and at night. Lots and lots of oxygen to go with the lithium and calan.

Both kids jumped into help. The son made sure I got up to go to work. (Also learned some new four letter words if he did not know them already.) My daughter and son both helped to make sure the household functioned if I couldn't. Colleague at work had seen this before and, if he saw that I was in trouble, segued into the lecture as if it was actually planned.

Survived, as will you. Best and most inspiring was my daughter saying, "Daddy, are you alright now?" Goddam, how can you NOT come back?

Bless you, and hang tough.

Title: Re: Tired
Post by arby on May 10th, 2003, 8:02pm
fu

Haven't really met but you have to hang in there.  
1)First there is your family there.
2)Second there is your other family - here.  

They are both here for you  and don't you ever forget it!

It will get better soon.
PFDAN
Ross
Title: Re: Tired
Post by TomM on May 10th, 2003, 10:31pm

on 05/10/03 at 19:52:17, Miklos wrote:
Best and most inspiring was my daughter saying, "Daddy, are you alright now?"

That, my friend, says it all!
Hang tough, Fu.

TomM
Title: Re: Tired
Post by Callico_Kid on May 10th, 2003, 11:24pm
Fu,
I can't really add much to what everyone else is saying, but I am going through much the same thing as you although I thank God mine are not quite as severe.  I've been chronic for just over forteen months now and a few months ago I too was asking how to make it all work.  Fortunately I work as an independent contractor and my boss witnessed a strong 10 on the job one day, so he is very accomidating as far as the hours worked are concerned.  I just had to find a way to make 20 to 24 hrs match up to what 50 to 60 hours made a year and a half ago.  I was able to develope some business that I could do on a part time basis that actually pays better than my FT job.  Check your paper for bus. opps. and see what is there.  Most of what you will find is bogus, so check them out carefully.  I bought into a small vending busness that is starting to pay off.  E-mail me if you would like info. (No I don't make anything off of it.)

I struggled with depression mostly because I was not going out of cycle and the thought of doing this the rest of my life was hard.  My hat is off to so many of you who have been chronic for years.  My Dr. put me on Prozac and I absolutely hated it.  For the first couple of weeks it helped, but then the side effects were worse than the depression.  I took myself off (against orders) and replaced it with St John's Wort with better effect and no side effects.  You might want to try it.  (It's also a lot cheaper than what the pill pushers want to give you.)

Praying for you,
jc
Title: Re: Tired
Post by Aussie on May 11th, 2003, 2:37am
Gday Fu,

So sorry to hear that you are doing it tough at the present. You and all the other Chronics would have to be the toughest diggers around, I can't even imagine the life sapping effect of geting belted every day.

From reading your past posts, you're a good bloke who always contributes thoughtfully and inteligently, to help others like myself, all around the world. I wish their was some way that I could help, but all I can offer is my possitive vibes, wishing that everything works out for you and your family.

Hang in their mate.
Title: Re: Tired
Post by SommelierCH on May 11th, 2003, 5:37am
Fu,

Great to hear about Sandy, thanks for the update. That was one of the first, incredible miracles that I have witnessed on this board. I will never be dissuaded, that the positive energy exuded by this Family, can make manifest changes in the fabric of the Universe. So, can we practice on you?

I propose that: You tell us the time of day that your worst attack comes at, and all of us will spend 10 minutes, at that time, covering you in healing white light. We will not be trying to take over your pain (although like other PF Clusterheads on this Board, I wish I could make that donation), we will only be focusing all of our energies on you, all at the same time, all on the same wavelength. The wavelength of pure white light. (uh…I don’t know right off hand what that exact wavelength is, but I know that the Oboe, in an orchestra, sounds the tone that the entire orchestra tunes their instruments to. That wave length is A440). Mark C. will fill you in on the rest.

The winning touchdown in the Super Bowl, the goal that wins the Stanley Cup or the photo-finish at the Kentucky Derby, produces an incredible amount of energy, around the world (not forgetting World Cup soccer), all focused at one place, at one time. For a long time, I have wondered how that, spontaneous, multi-faceted explosion of energy, could be channeled or focused to achieve something good. You deserve the right to be our “guinea pig” (have you ever ridden a horse?).

As for the other stuff…$HIT!!!

Let us try to help you, it would make us feel good.
David J.
Title: Re: Tired
Post by JDH on May 11th, 2003, 9:42am
Fu,
Like a few of the others have said, you might want to try the Prednisone. It might give you a few pf days where you can actually feel like a normal person again and that can definitely lift your spirits even if it's only temporary.
pfdan's

Jim
Title: Re: Tired
Post by cathy on May 11th, 2003, 10:45am
:'(

Fu,

Im so sorry your having such a rough ride at the moment, each and every one of us is here to support you, sufferers and supporters alike.....you will get through this Fu, because we are here to make sure you do!!

Sending you pf vibes and prayers.

Cathy  :)
Title: Re: Tired
Post by Peppermint on May 11th, 2003, 11:11am
Shawn,

Reading all you have written, I really feel for you.  All the things happening to right now can certainly be overwhelming, aside from the hell of the clusters.  I want you to know, its difficult, perhaps overwhelming, but things will get better.  
From personal stories relayed to me about Depakote, it can be a nasty drug, messing with your head when you need it the least.  Different folks, as you know, react differently to each med so this may or may not be a part of the picture with you.  

Maybe you could consider DHE treatment or a Prednisone break for the clusters.  It would give you the break you need, at the very least temporarily.  
If you're not sleeping well, melatonin supplements or tea might help you get a few good night's sleep, so you don't feel like oatmeal.  I have a good friend who is chronic and this has recently helped him immensely to get a substantial amount of sleep at night, before his next hit.  Sleep would definitely help you function better and diminish that vulnerable feeling that happens when you don't get enough sleep.  
I don't know if any of this will help.  I just got a pang in my chest reading about what you're going through and so I thought I'd make some suggestions.  

One day at a time my friend.  I can't say I know what you're going through first hand, but I'll offer my support the best I can.  

Pep  :)
Title: Re: Tired
Post by kjaycox on May 11th, 2003, 3:20pm
Fubar, you responded to me when I needed it and I really appreciated it. I don't know your history with Depakote, but I quickly found out when I was taking it, my headaches got worse within a couple of days of the first dose. Different people react diiferently, but could this be a possibility? Didn't do shit for me but cause more pain. I am now in this bout for three months....longest ever (don't want to think about the C word). I am relatively pain free (still have shadows) on 480mg Verapamil and have O2 as back-up. Hope you find some answers to help you soon. kj
Title: Re: Tired
Post by tanner on May 11th, 2003, 5:06pm
fu, hang tight dude!!!

             i know that i have not been a great supporter lately............. too wrapped up in my own survival and assorted other shit but i am really happy that i chose today to take the time to come back and check on my friends here.

              man, your sense of humor, your sense of fair play, your down to earth input has helped me through many a rocky spot even though you didn't know it. i thank you!

              as to your ? , i have taken a leave from work, but only because i was working for very understanding people, and they didn't want to lose me permanently.

              well, i ended up having to leave anyway and change everything around these fucking ha's...........

                i don't know the particulars of your sit but if you would like please e-mail me or call 410-820-5024 and i will moan, cry, laugh, or vent with you as needed.

                but whatever you do.... hang tough bro!

we need you around here.............tim
Title: Re: Tired
Post by kissmyglass on May 11th, 2003, 6:13pm
Sorry Fuman  >:(
Hang in there......

Kev
Title: Re: Tired
Post by stuey on May 12th, 2003, 8:23am
Fu I understand some of what you experience.  The why me's, trying to get others to understand although most don't, wondering when the attacks will end.  Try the Prednisone taper I hope that can help you at least for a few days.  I'm still in my cycle so I definitely feel you.  If prayer and good thoughts can help then my prayers and thoughts are with you.  It makes you wanna give up I know but everyone says they will cease.  I don't know why we are afflicted with this - who knows but please remain as strong as you can and hopefully the sun will come out soon.  Look forward to that and embrace it when it comes like never before.  Everybody said good stuff before me so I will keep mine short.  Peace.  Stuey
Title: Re: Tired
Post by tannero on May 12th, 2003, 9:26am
I wish I had some words to help.  All of these other folks are so much more eloquent than Me.  I am a new timer to the board but not to clusters.   I swear to God I hurt when I read your post.  Hang in there, hang in there.   There is a light at the end.  Just wish there was something I could really do to help you.
Tannero
Title: Re: Tired
Post by ZAIRA on May 12th, 2003, 9:40am
Hi Fu :'(, we are all thinking good thoughts for you and praying that you will be pain free soon.

Zaira :-/ :-*
Title: Re: Tired
Post by Mack on May 12th, 2003, 12:49pm
Fubar,
Very very sorry to read about the hell you're goin through. Hang in there. Better days are comin'.  :)

On your question about disability, you might be able to get a break. Most(if not all) employers here in California have a benefit called Short-term disability. you may be able to get your Dr. to right you a perscription for up to 12 weeks off. It's easier than Social security. I believe it pays you 55% of you salary tax free, so it may work out about the same as your regular pay. Just one way to go if you need a month or two break. might be worth lookin into.

Keep on venting. we'll keep listening. That's why this board is here.

Empathically,


Mack
Title: Re: Tired
Post by vig on May 12th, 2003, 4:15pm
I'm not on any meds and still break down crying quite often.  I never did before.  This is all new.

I just started a new job and with it came a new episode.  I come into work after being up all night.  I look like I was drunk.  I feel retarded.  I know I'm not pulling my weight.  I just grin and hope nobody notices.   I met a really nice woman here, but it was while I was in 'zombie' state.  I don't remember it very well, but she won't talk to me and rushes right by.  I assume I said something stupid or acted like a retard.  I don't even know.  Don't let anybody tell you this doesn't impact your life, because it does it in all sorts of ways.

you just gotta live with all of it and count your blessings.
Title: Re: Tired
Post by 9erfan on May 12th, 2003, 4:39pm
Fu-

I'm sorry I'm reading this so late...you know what I've been going through lately...

What strikes me as amazing about you & this post is that you have been trying to help me over the past week and you never once mentioned how bad things were for you right now.  Don't I feel selfish?  Dude, don't worry about me anymore...I'm at the tail end of my KIP 10's (just going back to being chronic) so I can deal.  Take care of yourself instead.

You don't know how much it means to me that you were willing to go out of your way for me when you yourself have been struggling so much.

Well, now that I am starting to feel better it is my turn to worry about you.  If there's anything you need, no matter how big or small please feel free to ask me.  Even if you just need a ride to the ER or something, I'm available.  Or even if you just want to get together for a drink (i know, no alcohol) after work to vent...I'm there.  You know where I work...and I live up in San Leandro.  My cell phone number is 408-499-8678.  Please keep it for future reference.

On another note, I also recommend Prednisone for desperate times.  I didn't like the side effects, but not everybody has those same side effects...and it usually did abort a bad cycle for me.  Also, I disagree with the person who said not to mention suicide to your Dr....sometimes it's the only way a DR will take you seriously...just my opinion.

I know it sucks to be traveling right now, I'll keep you in my prayers that you can through this trip to Memphis with some sense of normalcy!

hang in!
Virginia
Title: Re: Tired
Post by Woobie on May 13th, 2003, 8:26am
Hey Fubar..
I'm sorry that you're goin thru this.  I don't know what to say.. Im not good at this..

just know that I'm thinkin bout ya... and I hope it gets better for you...

and I just want you to know that it brings tears to my eyes, reading 9erfan's post just now..

about the leave of absence.. use th FMLA.. get a doctor to write you a letter for the FMLA.. and take one.. sounds like you need it.   I cannot imagine being productive at ALL ...  I'm just so sorry!!

Tina :-*
Title: Re: Tired
Post by Roxy on May 13th, 2003, 9:09am
Fu, I'm so sorry I'm reading this late. I have been gone with no online access for a while.  I am so sorry you are going through this time right now.  Just keep remembering that it is a "time" you are going through....it will pass.  I wish there was something I could do to help you, other than to just put words up here on the screen.  It sounds like you have more on your shoulders than any one person should have to carry.  

I've been chronic for eighteen months too, but at least  I get to work out of the house, so I don't have to worry about a boss or job.  I honestly can't imagine how I would handle it if I did have to show up somewhere everyday.  That you have done it for so long says a lot about the type of man you are.   You do have the strength to make it through this period.  Try the pred to see if you can get a break, sometimes just a few days PF can change your whole mindset.  

Try to hang tough Fu.....just keep thinking..."I will kick it's ass!!!!"

Hugs and PF wishes,
Tracey
Title: Re: Tired
Post by miCHel on May 13th, 2003, 9:26am
Hey Fubar,

Man, your post really shook me.  I don't know you but I always enjoy reading you.  And by looking at this thread, I am not alone.

My only advice would be this : Hang in there and do try new meds (Pred or something else) cause we all need that little light at the end of the tunnel.  You will make it and I am pretty sure you will look back on those days with a big smile...

miCHel
Title: Re: Tired
Post by CathiP on May 13th, 2003, 3:18pm
Shawn-
Was gone for a few days, and I had no clue you were running out of rope.....I am so sorry!
I can't help thinking about the Fu-man, who always has some strength to share with someone else. This is when you get to lean on us. The CH's will subside- remember? Now is when your focus becomes surviving- rest, eat right, in general, take care of YOU- you cannot expect to have that amazing Fu- strength if you are exhausted & undernourished. You can also ask you Neuro to consider the Pred. burst-just might break the cycle.
As for the family/financial sitch-it sucks, I'm not gonna tell you I have a clue what you should do- all I know is that, if you have a roof overhead, and the awater's still running, you and the kids will be just fine. Keep us posted when you can.......oh, and I really like David's idea- and so, at 3pm, I'm going to focus on 10 mins of positive thoughts- vibes, juju, good karma, prayers, whatever- for those in need......hope it works!
PF,SHAWN!!!
Cathi  
Title: Re: Tired
Post by Woobie on May 13th, 2003, 4:59pm
Still thinkin bout ya..

How you doing??  

VIBES to you!!!   hope you're doing a little better!!!.. keep on ventin!!

tina   :-*


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.