Doc's Cluster Headache Journal

Sunday, March 09, 2008

A disturbing tought...

I am still in pain, my wife said I was moaning the entire time as I tried to sleep for a few hours this morning.

I think this is unlikely but I found myself wondering this morning if the migraine I was having now was the same one I was having for weeks and weeks before I started the Depakote.

I found myself wondering if this was my new "normal" state. If the part of my brain that was malfunctioning and causing migraines is now permanently malfunctioning and the Depakote was the only thing keeping it in check.

Like I said, I doubt that is what is going on... at least I hope.

Just to remind readers... I am a long time cluster sufferer, I hate to confuse things by talking about migraines here, but recently I have developed pretty severe migraines as well. They are significantly different in feel and intensity but can also be nearly as annoying in some ways, like the fact that they don't go the hell away. I am used to Clusters... I have learned to deal with that beast. But migraines thats a totally different skill set. You know how after a Cluster breaks, how sometimes you can feel so much relief, the pain just falls away, leaving you with all the adrenaline and endorphins pumping. I have to admit sometimes I feel almost good after an attack. I feels like I should not have survived, yet I did...

Migraines are nothing like that... just a boring long banshee wail of really annoying pain that makes it hard to move, think, enjoy anything... for long long long stretches of time. Oh, and just for fun the banshee kicks you in the side of the head now and again for fun. When the headache does die down, it takes its own sweet time.

I am afraid that my future is to be filled with a rotating lazy susan of severe headache pain flavors. Yay!


  • I hope you have a better day today than you did yesterday :(

    Love you,

    By Blogger Katy, at 3/10/2008 11:08 AM  

  • yes, I do know. And you pretty much pegged my beast for what it is.

    Like, Katy, I hope you feel better soon, too.

    By Blogger deborah, at 3/11/2008 6:30 PM  

  • You described my life...I am a chronic CH and have developed migraines as well...they last and last and last...I can't move...I vomit...they last about three to four days, and I mean around the clock.
    Thankyou for this site...Im not real fond of the site you referred to...we CH's need peace and support, not attacks. I know how you feel Doc....

    By Anonymous Anonymous, at 4/11/2008 6:24 PM  

  • Anonymous,
    I am very sorry to hear that you also have both migraines and clusters. It's a unique and hellish experience especially when they come together.

    Peace and support... That does indeed sound wonderful. I wish it was simpler to find.

    Thank you for the kind words.

    By Blogger Murdock Scott, at 4/12/2008 2:10 AM  

  • Im a chronic,med-resistant CH,for a very long time now.It has destroyed my life.I started getting CH's-(chronic from the 1st one)fairly young,w no time to establish my career,or finances, etc.//I've had to settle in many ways.Survival has been my only mantra.My husband,at one time,was a wonderful support system-incredulous as it were,he amazed me w his commpassion and ability to soothe me-in fact he was my only form of consistent support.//In the past yr or so,he isn't so good at being supportive.Im very seriously considering "busting".//I've tried it all,done every known Tx for CH and done all protocol-including having 10 inch q-tips w "wooden" sticks and the cotton buds saturated with lidocaine shoved down my nostrils and left in place for 20mins while I gagged,lifted my feet in air,etc.//I had to concentrate on a poster of a unicorn on the ceiling during the procedure,so I wouldn't either rip the qtips out or jump off of the exam table-it didn't work anyway-not even the slightest iota of pain relief in my face-wtf//My neuro told me that isn't even a treatment that is to be done for CH.So that was for naught too; as well as all of the other painful procedures//Even if it worked,there's NO WAY I'd have the ability to insert the q-tips IN MY NOSTRILS while Im ramping up to unspeakable pain.//I don't shadow.I either have a 10++++ or I don't have anything.No in between.// Nothing is left to do or try.I pray I will find some semblance of relief,and be able to have a job,make money, and make up for the time and money I've lost.I'm poor.Because of CCH's.Not because I'm lazy or dumb.It's due to livng w crippling,chronic pain.//I am educated and intelligent,even pretty from what I'm told-very good at what I do.You'd never know I am who I am-gifted and skilled-and so,so sad;if you see me on support groups,you'll never guess.//I'm funny,witty...upbeat w a positive attitude.That's the face I show to the world.//My prayer is for us all to find relief,get some rest,have peace of mind,have ALOT of support with ALOT to spare//For us to recieve validation,have medical professionals,our families and friends(what we have left of them-my parents turned their backs on me.Literally left me for dead and homeless even though they could've helped,they are fairly wealthy.They think Im "lazy"-even though they witnessed thousands of episodes.They also believe there must be SOMETHING,in this day and age,"they" can do-w no known cause or cure??????Had they bothered to read the medical literature I printed out,and hand-delivered, they'd KNOW this)to believe us and in us,to trust us//To understand that we're suffering beyond words and detest every second of it.Has anyone ever cried so hard that no sound came out when you realized how helpless you were/are?I have.//I was sitting alone,on the couch in the living room.It came out of nowhere.I didn't reach out to anyone.Why?//I too get migraines and various types of tension headaches that cause nausea,vomitting.They last for days.I'm unable to remember how long it's been,what day and time it is...and I don't care either.//I also have different "types" of CHs.Some burn,some stab,some feel like a dull knife twisting in my skull on the left side,some are centralized in the middle of my left eye-like the well-known ice-pik decription//sometimes my gumline and teeth ache unbearably...other times my left front tooth ACHES.//I experience facial pain on my CH side.Dead center on my chin bangs,radiating pain up my jaw and into my ear.//My left ear canal is excruciatingly achy.I get the sensation that scalding liquid is being poured into it,and the sensation runs down into that side of my neck,aligning w my ear canal.//I don't believe I've ever opened up to anyone this way before.//I am with all of you.Always.

    By Anonymous Anonymous, at 11/12/2011 2:51 PM  

  • Anonymous 11/12/2011,

    It's hard to respond, your post has left me feeling humble. So much of what you said hit home. I feel that I understand more than most anyone could, but also I feel reverence for people that may be in an even worse situation than me.

    I know how hard it is, I know what its like to feel like people don't believe you (or worse yet for them to openly not believe), I know the frustration of not being able to accomplish the things you know you are capable of, and I know the pain.

    I can only imagine what my life would be like if it was even worse.

    If this place is "about" anything... its about bravery and survival. You seem very brave to me. Thank you for your story. It may very well inspire others to be just as courageous.

    By Blogger Murdock Scott, at 11/12/2011 5:42 PM  

Post a Comment

Links to this post:

Create a Link

<< Home