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Topic: On the edge (Read 771 times) |
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Tachometer
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On the edge
« on: Dec 23rd, 2002, 12:03am » |
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First of all this is probably going to be long...simply because I want/need to vent to people that understand what this is all about.
A little background, I'm 28 and had CH's since roughly '95. I'll never forget the first one...it scared the living hell out of me. But it went away...and I was a poor college dropout pizza delivery boy and couldn't afford to see a Dr. I didn't even want to...for fear it was something extremely serious. Turns out it is huh?
So I've had them off an on since then. The last time was extremely serious...a couple weeks long. Lots of Dr visits and not a lot of results (one Dr. perscribed 800 mg of Advil 3 times a day...lot of good that did). I was given Imitrex and it had some positive results but nothing really worked...so I sweated it out and the cycle eventually ended.
But this time....I don't know. It started at least 3 weeks ago and just isn't ending. At first they were only hitting me at night...I'd wake up in that sort of pain we all know well. But that ended...and I thought it was over.
But the cycle hasn't ended. Foolishly I drank beers a couple times...I think part of that is due to the fairly massive amount of depression right now. Sometimes there are no effects from alcohol, sometimes it hits instantly. I'm too scared...no, I'm not scared...I'm too TIRED to drink now.
The part that is making this so hard to handle is my life outside of CH. I was a Senior Financial Analyst making extremely good money, on a career path...but it wasn't something I wanted to do with my life. I quit that job to go to culinary school....and I don't regret that choice. But fiscally that was a poor choice. Obviously being unemployed for 3 months doesn't make life easy. So I got a job working at Macy's to have some cash flow. It's not great money but it's income. It's hard work but oddly rewarding...thankfully I haven't had one at work.
But I work long hours....all day on my feet. I come home so tired. I have so little cash, barely enough to cover my bills. And to make a long story short my parents are in the process of getting divorced. Lovely. Merry Christmas....
What's just putting me on the edge here is that I can't get going...you know what I mean? I work all day and want to do other things...but it seems that these things hit daily. My apartment is a mess...I want to clean it so bad. My car is a mess (I'm a certified car maniac...just ask around!) and I haven't been taking care of it. I'm avoiding my friends because I am so damn unhappy right now. Before anyone asks I've seen a shrink...and that pretty much sucked...and now I owe him money too. Fantastic.
I came home today feeling great...I had gotten my first paycheck and have money in the bank. I kicked ass at work and my manager knew it. I had just gotten Citizen Kane and I was looking forward to watching it. I came home, watched the movie...and with 15 mintues left I felt one comming. I wanted to cry, I wanted to scream, I wanted ANYTHING BUT THAT HEADACHE! So I stumbled to my room...my mess of a room...to hide...just in time to hear a friend calling about going out tonight (with some old high school friends that I love dearly).
I feel like I'm being punished for something. That I've wronged the world somehow and that I must pay for it. @#$% I'm crying right now thinking about Christmas and how much I've enjoyed it in the past...and hate it this year. I'm thinking about how my dad is at the house alone...my mom is at her apartment alone...how I can't afford anything...how I just want to have the energy, the happiness...to do SOMETHING. How I don't even want to cook anymore...even thought I quit my job for it.
I don't want to die...I want to live damnit. I want to live again. I HATE THIS.
To anyone that has read this entire thing...thank you. I know it's a lot and I'm still going. I don't know what else to say. I feel better having said all this...and I know that all anyone out there can do is say "it's going to be OK"...and I KNOW it will be....I'm just so tired of WAITING for it to be OK. I want the strength to MAKE IT OK AGAIN. I want the energy to DO something...to LIVE my life again.
I want....a vacation. lol
Neil
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domm
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Re: On the edge
« Reply #1 on: Dec 23rd, 2002, 12:13am » |
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Neil - go ahead and vent. That's part of why this site exists (Thank you DJ). Sorry to hear you getting the trashy end of what this condition does to good folks. Any meds working for you? Oxygen and Verapamil are relatively cheap. Vera is almost as cheap as OTC aspirin. Read up and pull up a chair.
It does come to an end (for episodics anyway)
Hang tough
domm
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paul_b
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Re: On the edge
« Reply #2 on: Dec 23rd, 2002, 12:25am » |
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Vacations are good. Take one each day by noticing and enjoying the pain free moments. They are there but at times we forget. It seems the hardest when we are deprived of sleep and other factors in our life aren't as we would like them. Tough time now, that is why the good moments need attention. Hang in there, going through a rough time myself now; don't get depressed, go emotionally numb. Check out if depression is a clinical problem. Body chemistry can effect moods. One day at a time fellow survivor.
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Tachometer
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Re: On the edge
« Reply #3 on: Dec 23rd, 2002, 12:35am » |
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I'll check out those other treatments...of the inexpensive variety. But for me the absolute best cure is to keep on moving...be it physical exercise, emotional exercise...whatever it may be. Complacency is the killer for me.
And you bet I think about those pain free moments. The hard part to overcome is the desire to do nothing during those times. Sitting and relaxing....closing my eyes...melting away....sleep...bliss....BANG it hits and I'm forced to crawl up into a ball anyway.
When the reason I am unhappy now is due to my inactivity (I've had enough shrink experience and read enough books to know myself well enough to understand that now) and the beast is causing serious problems with that.
Tomorrow....I start work at 6:30am. I end at 3. By 3:15 I am going to be changing into a some sweats and running shoes... I am going to run until my heart pounds. I almost WANT a CH then just so I can work my body through it.
It CAN'T last forever. The cycle WILL end. There is no doubt in my mind. I have a life to live...and NOTHING is going to stop me damnit.
It's time to get tired enough about being too tired. Ha!
Thanks for the support...I appreciate it beyond measure.
Neil
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suzy617
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Re: On the edge
« Reply #4 on: Dec 23rd, 2002, 6:10am » |
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Neil, Sorry you are in so much pain. I have not much to offer to you but just my wish for you to be pain free soon. Yes, it will go away and you will be back on track again. Hang in there!
suzy
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Charlie
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Re: On the edge
« Reply #5 on: Dec 23rd, 2002, 6:23am » |
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Damn sorry to have to welcome you to our little world. That is great post describing clusters and how they can get in your way. We all thought we were dying, had a tumor, or stroke. At least the thing isn't lethal. By the way, your running may be a help. Exercise has been helpful to some. I think it has a positive effect on the vascular system. On that note, here is a technique I found very helpful:
Dr. Wright's Circulatory Technique:
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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SommelierCH
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Re: On the edge
« Reply #6 on: Dec 23rd, 2002, 6:37am » |
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Hiya Chef Neil,
Welcome to our loony bin. Dark^Angel should be around soon to give you his classic “Cluster Greeting” and to clue you in on our secret handshake.
In the meantime, I’ve got one word to say to you (like in “The Graduate”, uh.. that might be one of those “only if you’re over 40” references, so you might have to GOOGLE it.) …HOLLANDAISE. I know with the fat consciousness in this country, hollandaise is rarely found on any menu any more, all the better for my purposes. When I’m putting together a new restaurant and hiring staff, I pick one standard thing for every position and have the applicant do it. For a bartender, I ask them to make a martini up, then watch how they prepare it. For a chef or sous chef or even a head line cook, I ask them to make hollandaise (duck confit would be my first choice, but I generally don’t have the 3 weeks to wait). Almost all chef applicants are graduates of some culinary institute, and I like to see if they were awake during the section on “the seven classic French sauces”. Screw that “exercise until sweat is dripping from your ass”, grab your whisk, refresh yourself on the classic French “jacking off” motion, and get into my newest exercise craze. No, it’s not “Jazzercise” it’s “Hollandize”.
Well now that I’ve solved your career anxiety, let’s move onto the real stuff, Cluster Headaches!
Feeling a little sorry for yourself, huh? Wallowing in that trough of self pity, are you? Well you’ve come to the right place, son (shit, did I really just call someone son? Charlie, HELP). As Jonny says “Been there, done that, and got the T-Shirt”. We all have wondered at one time or another, “Why Me”? Tell you what to do, go through this message board and read about our (your) family. When I see what all these other people are going through (Hell, just having to deal with kids while you’ve got CH’s trumps ALL of my cards) you will gain enormous perspective on your own situation. Now don’t get me wrong, listening to people vent is one of the things we do best!!! So go ahead and post away. But to really heal your soul, read about us, and you will find yourself looking at your own life differently…. positively. If you are episodic and enjoy at least some pain free remissions, reading just a couple of posts about our chronic brothers and sisters will have you singing like you just won the lottery.
With that being said, I think we all learn from each others track record with the BEAST. So, what works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets, NOT the regular tablets) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
Good luck Chef, and let us know how you are doing,
David J.
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Jackie
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Re: On the edge
« Reply #7 on: Dec 23rd, 2002, 7:07am » |
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Good Morning Neil,
You are getting some good advice here. These folks know what they are talking about and they will help you in this fight against the 'head dragon'. This is not an easy battle but you CAN win.
My hubby, Blake, is a chronic (many years). The two things I want to stress are....1) NO alcohol while in cycle... 2) Keep moving!! The demon is a sly, sneaky bastard and if he catches you relaxing to much he'll get you. Taking a triptan at bedtime will help you through the night. Some try Dramamine (the motion sickness OTC drug). It will keep you out of REM sleep and that's when most CHers get hit.
The depression seems to be a by product of CH. I've always thought it was the demon's way of getting CHers down and then beating them up. Get your 'dobber' up, son, and kick his butt 
Now......clean up your house and cook something wonderful for a couple of friends. It will make you feel better and they will love it. ;D
Good Luck
Jacks 
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Ann
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Re: On the edge
« Reply #8 on: Dec 23rd, 2002, 7:42am » |
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Dear Neil,
First of all welcome and sorry you had to find us. Secondly, you are in the right place. Everybody here has been where you are. We have all lived with the beast for a number of years. DO NOT LET HIM WIN!!! Last spring I was exactly where you are. I was so depressed that taking a shower was the big event of the day...when I actually got the courage to do it! LOL Even coming to this site was too much for me. I had nothing to offer. Do not let the beast control your life. This fall I was very close to being right back where I was last spring..but I fought like hell. I'm still fighting and I'm glad to report that I'm winning! Remember, if you want to go out with friends...GO! The people who are around me know that I have this afflication, and if he makes an appearance, they let me deal with it and we move on. I almost stopped myself from going to see Peter Gabriel in concert last month because I was feeling like crap. Had a long chat with my sister about it and she said, "If you get hit, you give yourself your injection, we wait for it to take effect and then we go back to the concert. No big deal! Now get your ass in gear!" It was what I wanted to hear. I ended up having the best time and even got to shake the man's hand! That's how we clusterheads have to live our lives. Take advantage of the good times. They are what keep us going. You have a disease. It disrupts your life only if you let it. This is what I have learned only recently! 
As far as meds, Jacks, David and the gang have pretty much covered everything. I have nothing to add there.
be well my friend and don't let him win!
hugs
Ann
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Roxy
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Re: On the edge
« Reply #9 on: Dec 23rd, 2002, 9:52am » |
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Neil,
I know it's hard to even exist through these times when the ch's get you down. But, you have to get up and keep moving. It will get better. Try all the advice the good people on this board offer you...they know what they are talking about. They are the best! I am also going through the worst time I have ever had with these things. Life just seems unbearable right now, and it is so hard to keep telling yourself that it will change...but you have to do it. Repeat the words like a mantra...
Get up and cook, clean, vent...scream at the walls. Print of the info on ch's, and give it to your friends to read, you will be amazed at how understanding they will be, and they will know what to expect if you go out and happen to get hit.
Hang tough--good thoughts headed your way,
T
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Brassbear
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Neil, sorry to hear of your pain bro. I can't offer much advice yet, I'm new to the CH world myslef. I can say I feel for you.
No money for Christmas? Help paddle this boat, will ya? Hey, that's ok. You're a CHEF right? Shoot man, cook them a nice meal for Christmas. Not too many people don't like to eat dude!
Michael
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Azrael
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Re: On the edge
« Reply #11 on: Dec 23rd, 2002, 1:44pm » |
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Welcome to the board! Sorry that the beast is whisking your cranium until stiff peaks form. Good luck!
PFDAN...................................... Drk^Angel
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Tachometer
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Re: On the edge
« Reply #12 on: Dec 23rd, 2002, 5:14pm » |
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I don't even know how to express the overwhelming gratitude I have for you people. Finding those that truly understand is so wonderful (and painful too...knowing you suffer as I!) and your stories and advice is just what the Doctor ordered.
It was especially great to get the chef advice...it's encouraging to hear when you are so...well....discouraged!!
I don't know what else to say right now... I'll search through this place and see what other gems I can find. You people are beyond amazing... I couldn't have asked for a better Christmas present!!!
But right now...I gotta put on the running shoes and enjoy this beautiful day!
Thanks to all...and have a wonderful holiday.
Neil
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Ann
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Re: On the edge
« Reply #13 on: Dec 24th, 2002, 8:11am » |
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Neil!!!
That's what I love to hear! You go out there and run your ass off! Enjoy the sunshine, the wonderful smells of Christmas, and the smiles people will give you as you whip around them! There's nothing like doing what you love to do!!!! Make sure you remember that feeling for when you don't feel so hot. It really does keep us going!
Merry Christmas Hon! Be Strong!
hugs
Ann
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firebrix
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Re: On the edge
« Reply #14 on: Dec 24th, 2002, 1:30pm » |
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Welcome Tachometer!
Pleased to hear the blues have passed! We all get there some days. You are not alone.
Great to hear you're a chef! I'm going to hit on you for input from time to time! Maybe you have some good vegetable dishes? The world certainly needs better food.
I'd just like to add that O2 can be a life saver, but must be used with a non- rebreather mask. It is safe, relatively cheap, and in many cases when used as soon as the first signs of a headache occur, effective.
Imitrex injections work for most CHers too. Read as much on this site as you can, then check out the OUCH site (and join!) There's heaps of info there too.
Its hard to realise that every day's a gift, but it is. Even with CH. Enjoy the PF moments and never weaken.
Wishing you love, peace, health and happiness
firebrix
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j.halber
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Re: On the edge
« Reply #15 on: Dec 25th, 2002, 3:37am » |
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I find that you have been given good advice.Clean up the mess, cook, eat and be as merry as possible in the silent head times!And do something that makes you smile every day,if you can.As a cronically cronic I find that cheap kids toys do wonders!For example, blow some bubbles in the sunshine, makes the heart smile, even if it's just for a little while.Every little bit helps! Strength to you.
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rumplestiltskin
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To be painfree
...and
........................................................Rosebud
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