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        New Message Board Archives >> 2004 Posts >> Am I one of you guys?
        
(Message started by: brocktoon on Dec 6^th, 2004, 4:21pm)

Title: Am I one of you guys?
Post by brocktoon on Dec 6^th, 2004, 4:21pm

Hello everyone. My name's Mark. 37 year old male. I may or may not be a long-time clusterheadache sufferer. A friend suggested I may be, and referred me here to spill my guts and get some feedback. That said, here's my story...

For about ten years now, I am awakened each and every night with a piercing headache, usually at about the same time (maybe 4 am). It's like something "goes off" in my head and, no matter how deeply I'm sleeping, I'm abruptly stirred from my slumbering. I used to it, but it's made my life difficult, if only because my sleep is curtailed by 3 or 4 hours every night. After I am awakened, I can only halfway fall back asleep due to the headache. It also seems that when I am thrust awake, I get a funny taste in my mouth (but then again I'm a dreaded "mouth breather", so my mouth my be in a horrible state late at night anyway).

Describe the pain? Well, it's piercing, as I said, and it does not really slack off too much no matter how long I wait until I have to get up out of bed to face the day. The pain seems to come from the middle of my skull and radiate out to the temples, but it's hard to say. I don't think it comes from behind my eye.

Anyway, as I say, I haven't been diagnosed. A few general docs have just ascribed my early morning headaches/awakening to long-standing chronic depression...but I don't think so, not after 10 years of the pattern. The only thing I ever took that helped some in buffering the attacks is Depakote (and that only lasted about 2 weeks and was thereafter ineffective).

Thoughts? Ideas? Comments? Drugs? Docs?

Title: Re: Am I one of you guys?
Post by Jeepgun on Dec 6^th, 2004, 4:25pm

Hrmmm.... It doesn't SOUND like cluster headaches, but may be related, somehow. See if you can get your doc to switch you from Depakote to Verapamil and see if that helps. Good luck!

Title: Re: Am I one of you guys?
Post by nani on Dec 6^th, 2004, 4:25pm

Welcome Mark and I'm sorry you're having a rough time. I think the first thing you need to do is see a good neurologist who can evaluate and diagnose your headaches. If they are cluster headaches (try the cluster quiz on the left) there is a great deal of info here and at the OUCH site. I hope you find some relief.

Title: Re: Am I one of you guys?
Post by Jonny on Dec 6^th, 2004, 4:27pm

on 12/06/04 at 16:21:55, brocktoon wrote:

I can only halfway fall back asleep due to the headache.

Theres no sleeping with a cluster, at least not for me ;;D

Edit...to add, there aint even no laying down with a cluster ;;D

Title: Re: Am I one of you guys?
Post by Linda_Howell on Dec 6^th, 2004, 4:35pm

Mark,

Have you taken the cluster quiz link to the left of where you are reading this right now?

Besides not beiong able to lay down, sit still much less sleep...
Quote:

I don't think it comes from behind my eye.

This is a very telling area. It almost ALWAYS is the pain behind the eye. Like a white hot poker is being stabbed there.

Read everything here and get back to us. I hope it's something else for your sake Mark.

Linda

Title: Re: Am I one of you guys?
Post by john_d on Dec 6^th, 2004, 4:35pm

on 12/06/04 at 16:21:55, brocktoon wrote:

After I am awakened, I can only halfway fall back asleep due to the headache. .....
Describe the pain? Well, it's piercing, as I said, and it does not really slack off too much no matter how long I wait until I have to get up out of bed to face the day. The pain seems to come from the middle of my skull and radiate out to the temples, but it's hard to say. I don't think it comes from behind my eye.

It doesn't sound like clusters to me. for one thing, I can't imagine staying in bed; and for another, it only happens on one side around the eye and back from there. maybe it is, I ain't a doc, but it doesn't sound like it. hope you get a good diagnosis soon and good help soon after.

Title: Re: Am I one of you guys?
Post by marlin on Dec 6^th, 2004, 4:39pm

All good advice, especially the "See a GOOD neuro" suggestion. And I'm with jonny -- forget about sleeping during a CH. Can barely even sit still let alone lie down. That was until I found better living through chemistry and Imitrex.

Title: Re: Am I one of you guys?
Post by TomM on Dec 6^th, 2004, 4:53pm

on 12/06/04 at 16:39:53, marlin wrote:

Ditto, and sitting still or sleeping during a hit is impossible, no matter what the chemistry.
Find a good Neuro.
TomM

Title: Re: Am I one of you guys?
Post by marlin on Dec 6^th, 2004, 5:08pm

on 12/06/04 at 16:53:04, TomM wrote:

Ditto, and sitting still or sleeping during a hit is impossible, no matter what the chemistry.
Find a good Neuro.
TomM

Sorry tom, but for me, if I get hit in the middle of the night and slam a shot I can go back to sleep in 10 minutes if I'm lucky.

Title: Re: Am I one of you guys?
Post by TomM on Dec 6^th, 2004, 5:18pm

No problem, Marlin. Everyone is a little different. I can't go back to sleep until it is completely gone and I am totally exhausted.

Title: Re: Am I one of you guys?
Post by Mac_Muz on Dec 6^th, 2004, 5:38pm

Nope... You need help, but you most likely are not a clusterhead and that just might be a blessing.. Going 10 years with what ever you do have is nuts! Go get help today!

I don't think anyone will mind if you feel like hangin out here, but thank what ever it is that is your higher being that you are not one of us.. Mac

ps try the quiz.....

Title: Re: Am I one of you guys?
Post by maria9 on Dec 6^th, 2004, 6:39pm

Mark,

check out hypnic headaches on PubMed.

Marsha

Title: Re: Am I one of you guys?
Post by marlin on Dec 6^th, 2004, 6:51pm

on 12/06/04 at 17:18:02, TomM wrote:

No problem, Marlin. Everyone is a little different. I can't go back to sleep until it is completely gone and I am totally exhausted.

The same goes for me. A shot of trex and my CH is completely gone in 5 minutes. 5 mins getting used to the creepy trex feeling and ZZZZZZZ...... until the next one.

Title: Re: Am I one of you guys?
Post by OneEyeBlind on Dec 6^th, 2004, 8:01pm

The clusterhead quiz is usually dead on. Try taking that. I don't think you'll find you have cluster headaches, the symptoms just don't match up. Hopefully if you research headaches in general, you can help a neuro to figure out what you have. Suffering for 10 years with anything is the pits ... get yourself to a doc and try and figure out what it really is. Good luck !

Title: Re: Am I one of you guys?
Post by BobG on Dec 6^th, 2004, 8:22pm

Can't add to what has already been said. Just hope you can find relief.

And a question?

You're not an Elvis fan by any chance are you? ;;D

Title: Re: Am I one of you guys?
Post by cschick on Dec 6^th, 2004, 8:33pm

Mark -

Clusters are unilateral (see Don, I learned something!) and will feel like a hot poker pushing from the inside of your eye out. Temple feels like it will crack open at any moment and there is absolutely NO laying in bed dreading facing the day! That is my experience. True, clusters hit at the same time each day but if it isn't on one side or the other it probably isn't a cluster and be thanking the good Lord it's not!! I agree with everyone else in saying you need to find a good doc. Very important. I wish you luck in finding your answers! 10 years of pain is not something anyone wants to have to deal with - so many treatments available out there now so we don't have to deal with it alone anymore!

Good luck!
Karen

Title: Re: Am I one of you guys?
Post by cootie on Dec 6^th, 2004, 10:28pm

Well........Brad is odd guy out........cuz he lays down with an attack........on the couch........closes curtains and gets impossible to deal with but he lays part way down and I run fer the hills and leave him da hell alone. He's always been that way..........he used to go lay in the truck at the horse shows when he had an attack or we was out whatever. He doesn't rock or pace but.....he'll yell alot if bad enuff and trex isn't workin yet. It WAS HELL before diagnosed with no meds and so many attacks that lasted several hours a day for a LONG time. Monkey wrench Pam

PS: He doesn't sleep tho............maybe after the attack and he is wore out.......but sometimes he is hit again within the hour when he DOES go to bed.

Title: Re: Am I one of you guys?
Post by brocktoon on Dec 7^th, 2004, 10:01am

Thanks to all of you for the input. Guess I'm not a clusterhead afterall...but I am a step closer to getting this nut cracked...And Bob, yes, I am quite the Elvis fan. Thankyaverymuch! ;)

Title: Re: Am I one of you guys?
Post by Jeepgun on Dec 7^th, 2004, 10:06am

I'm glad you aren't a clusterhead. Just the same, get checked out, and don' step on ma' blue suede shoes!
[smiley=thumb.gif]

Title: Re: Am I one of you guys?
Post by ExplodingEyeBall on Dec 7^th, 2004, 10:22am

on 12/07/04 at 10:06:49, Jeepgun wrote:

I'm glad you aren't a clusterhead. Just the same, get checked out, and don' step on ma' blue suede shoes!
[smiley=thumb.gif]

http://im1.shutterfly.com/procserv/47b4ce24b3127cce9a7569f4ca6100000016108EZs2rJy0ba

;;D ;;D ;;D

Title: Re: Am I one of you guys?
Post by Jeepgun on Dec 7^th, 2004, 10:25am

Now THOSE are cool, Pat! Rock on!! [smiley=headbanger.gif] [smiley=laugh.gif]

Title: Re: Am I one of you guys?
Post by taraann on Dec 7^th, 2004, 10:41am

I sometimes lay down during an attack, in the fetal postion, rocking side to side. I usually alternate that and sitting up in bed rocking. Other times I pace and bounce. Just wanted to add my [smiley=twocents.gif] and say I hope you get to see a good neuro, get a diagnosis, get help, and that it's not clusters!

Title: Re: Am I one of you guys?
Post by thomas on Dec 7^th, 2004, 9:08pm

You could be a clusterhead, but you should see a doc first, I know my first couple of cycles were very mild compared to them now. Hope you get some relief soon.

Title: Re: Am I one of you guys?
Post by stevegeebe on Dec 7^th, 2004, 9:40pm

Oxygen.

See if it works. Good luck Mark.

Steve G

Title: Re: Am I one of you guys?
Post by Charlie on Dec 8^th, 2004, 2:59am

I hope you stick around and let us know what you learn. The one thing that makes me think that you may be having a form of this horror is that they wake you out of a sound sleep. It's clusters that do that.

With clusters, one does not go back to sleep until the attack has subsided. I know of almost no one who can still still during an episode. I would be in a chair after going through some standard stuff such as cold water, wet cloths and making sure no one came near me as I was probably dangerous to be around. I must have looked bizarre as I went though some wild contortions until they drained away.....clusters seem to do that for me.

Can you relax during the attack? If so, it's almost certainly not a cluster. That they wake you up makes me wonder. You need to get more information and to see a neurologist. The tests are mostly boring rather than frightening.

Good luck;

Charlie