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        New Message Board Archives >> Oct-Dec 2003 >> New Clusterhead has a question
        
(Message started by: CHmess on Dec 5^th, 2003, 8:23am)

Title: New Clusterhead has a question
Post by CHmess on Dec 5^th, 2003, 8:23am

I am a new at this - into my 3rd week of the same pain most of you describe. I have suffered from migraines for 15 year but I knew right away these were nothing like that!! I had never even heard of CH's and 3 weeks ago I started having an average of 3 masive ones a night, the worst one being between midnight and 1am. after dealing with them for 2 weeks and keeping a well-informed journal, I went to the ER to make sure it wasn't a brain tumor. They did a cat-scan (that came out clear) and after reading all of my notes that I had written down (list of my symptoms, how often, how long they lasted) the doctor came to me with a huge book opened to the page titled "Cluster Headaches" her list of symptoms in that book looked just like the list I brought in. I was relieved to know that it wasn't a tumor, but these a certainly no picnic either. My search engine brought me to this website which has been a life saver! It is very comforting to know that I am not alone in this but heartbreaking to see how many people have to suffer with these! :'( I have been able to learn a lot from this website!
My question: 3 nights ago my neck started hurting BAD along with the CH's, there is a lump kinda under my right ear (same side as CH's) but more towards the back of my neck, when I turn my head to the left it sticks out farther and if I touch it, it HURTS! It feels like a pulled muscle but during a CH it hurts a lot worse than any other time. Feels like I'm having a bad migraine in my neck which leads up to the CH behind my eye. Not really very fun at all!! I read something somewhere about a common trait called a ganglion lump that should go away with the cycle. I am just wondering if this sounds like what I have??? I am hoping that this means they are exiting!!!!!!! The last 2 nights I haven't had a CH but the pain in my neck intensifies throughout the night and its still impossible to sleep. Then I get the Ch's during the day's now. Please let me know if any of these symptoms sound familiar! Any info from anyone will be much appreciated! I need all the help I can get!!

Thanks!!
New Clusterhead

Title: Re: New Clusterhead has a question
Post by thomas on Dec 5^th, 2003, 8:31am

I dont experience the lump, but there are people here who do. I think the common slang word for it is "cluster-bump". Welcome aboard try getting some O2 to abort if you haven't yet.

Title: Re: New Clusterhead has a question
Post by ClusterChuck on Dec 5^th, 2003, 8:40am

Damn, someone else suffering from this hell on earth!

Sorry to have to do it, but WELCOME ABOARD! Glad you found this group of loonies!

The pain in your neck is fairly common. Many times it is caused by tensing your muscles while enduring a hit. Some times messaging the area, even if it hurts some, will help. Other things may be an over the counter muscle relaxant, like MOMENTUM.

I have heard of the lump you are describing, but have never experienced it myself.

As far as your headaches changing time, GET USED TO IT! This is a VERY tricky bastard! He loves to mess with you! Just when you think you have it figured out, and treatment that works, the son of a bitch changes! I have had this for about 25 years. I can't begin to tell you all the different tactics that my beast has tried!

Again, welcome aboard, and continue to read, read, read! There is such a wealth of information here!

Chuck

Title: Re: New Clusterhead has a question
Post by kim on Dec 5^th, 2003, 8:54am

I get that lump all the time with clusters. It is between my neck and shoulder area. Painful. I apply heat to that area and it helps a little.

Title: Re: New Clusterhead has a question
Post by BlueMeanie on Dec 5^th, 2003, 9:24am

Welcome to Clusterville. As ClusterChuck said, the times and intensity constantly change from day to day week to week month to month. You just never know what the Beast has in store for you. I don't actually get a lump, but after getting hit with back to back KIP 10's, my neck gets very sore. I take Orphengesic Forte to relieve the soreness. It is a strong muscle relaxer. Makes you very tired, but it does ease the muscle pain.

Title: Re: New Clusterhead has a question
Post by CHmess on Dec 5^th, 2003, 9:26am

Thank you for the info! Its nice to know that I'm not just some kinda freak, well, maybe?! I just got out of a hot shower and the hot water really does make it feel better for the moment. At this point, I wouldn't trade the constant nagging neck pain for 10 minuntes of a CH that's for sure!

I think I may have had a CH "episode" about 6 years ago while trying out different birth control pills. I had troubles with them giving me high blood pressure so they had me trying a bunch of different ones for 2 week periods, well, while I was on the last set I experienced this same kind of headache but noone ever said anything about Clusters and I they stopped as soon as I got off the BC pills. I only had 1 per night back then that lasted 15 minutes usually. When these started 3 weeks ago - that was the first thing I thought of. I thought my blood pressure was ski-rocketing again so I kept track of it but when that didn't seem to be the problem that's when I headed for the ER. And that's my story.

I hate to read about you long time sufferers! Sometimes I start to cry when the reality hits! It is sooooo nice to have you supporters out there though. People who have never experienced these think, aawww its just a little headache ya big baby, so its nice to talk to people who can relate and sympathize!!
My heart goes out to all of you!!!!!!!!!!!!!!

I LOVE THIS PLACE!!!!

Title: Re: New Clusterhead has a question
Post by Paigelle on Dec 5^th, 2003, 10:35am

on 12/05/03 at 08:23:51, CHmess wrote:

My question: 3 nights ago my neck started hurting BAD along with the CH's, there is a lump kinda under my right ear (same side as CH's) but more towards the back of my neck, when I turn my head to the left it sticks out farther and if I touch it, it HURTS! It feels like a pulled muscle but during a CH it hurts a lot worse than any other time. Feels like I'm having a bad migraine in my neck which leads up to the CH behind my eye. Not really very fun at all!! I read something somewhere about a common trait called a ganglion lump that should go away with the cycle. I am just wondering if this sounds like what I have??? I am hoping that this means they are exiting!!!!!!! The last 2 nights I haven't had a CH but the pain in my neck intensifies throughout the night and its still impossible to sleep. Then I get the Ch's during the day's now. Please let me know if any of these symptoms sound familiar! Any info from anyone will be much appreciated! I need all the help I can get!!

Thanks!!
New Clusterhead

I have the same problem with my neck. Sometimes I almost believe my neck hurts worse than my head. Even after the headache is gone, my neck is a mess. I have a muscle relaxer now for that. Thanks to the advice from Chuck and Elaine.

Title: Re: New Clusterhead has a question
Post by OneEyeBlind on Dec 5^th, 2003, 10:47am

I don't get the neck pain, but it is a common cluster head trait. As for the birth control pills, if you read through the archives you will see that some of us believe that homones and serotonin drugs can bring on these types of headaches. If you jsut recently started with Paxil or one of the many other drugs that change your serotine level ... you may want to consider ditching it !!!!!!!!!! Good luck to you and welcome aboard !

Title: Re: New Clusterhead has a question
Post by mikeyd on Dec 5^th, 2003, 10:53am

I have the Cluster-bump too, I'm not sure what the heck that thing is but it hurts like hell during and after the CH for me...as well as neck pain. It's like I can feel my artery on the right side of my neck dilating and that is when I run for my meds.

And yes [smiley=sayyes.gif]...OXYGEN! it has been the best abortive treatment I have found with NO SIDE-EFFECTS! Sometimes I still have to take my abortive (I use DHE (di-hydro ergotamine)nasal mister) for the oxygen to work, but it works fast...almost immediately.

I sure hope you get a handle on yours soon. Best wishes for some pain-free time!
Mikeyd

Title: Re: New Clusterhead has a question
Post by CHmess on Dec 5^th, 2003, 1:12pm

I haven't taken any med's for anything in a long time, I haven't changed anything, I don't know what triggered these babies this time??? I wish I did! I heard about the hormone level changes too, thought maybe they came on because I was getting ready to go through menopause but since I'm only 31 - I dought if I could be sooo lucky! hee hee :D

I keep tellin everybody "THESE THINGS ARE INSANE!!!"

Title: Re: New Clusterhead has a question
Post by thomas on Dec 5^th, 2003, 2:19pm

Clusters don't always come with "triggers". They usually just come whenever the hell they want. It's more common to have them come with triggers while you are already in cycle. But the cycle just starts, because it's time to start.

Title: Re: New Clusterhead has a question
Post by pubgirl on Dec 5^th, 2003, 2:28pm

Hi CHmess

The jury is still very firmly out on whether CH in women has any hormonal trigger (although it DEFFO does for migraine)

For what it's worth, I had migraine for years, then for no reason I can fathom, although it was after I had a baby, I started getting CH about a year ago.
The only good news is that I get almost no migraines now, whereas before Ch I used to get them monthly.
Still rather have the migraines any day though.

Wendy

Title: Re: New Clusterhead has a question
Post by CHmess on Dec 5^th, 2003, 2:30pm

Thomas, I just realized it says "It's just the beast under your bed, in your closet, in your HEAD!" under your posts.
That's the song I scream throughout the house with every CH [smiley=laugh.gif] just before it kicks my butt!

Title: Re: New Clusterhead has a question
Post by Little Deb on Dec 5^th, 2003, 2:35pm

Just wanted to say welcome. This is a great place to be. It is a good thing we don't have to buy shower gifts every time a new "clusterhead" is born into clusterville!
Happy to have a new family member but sorry for the pain. Stick with us.

Little Deb
CHer for 25 years and counting..... :P

Title: Re: New Clusterhead has a question
Post by CHmess on Dec 5^th, 2003, 2:35pm

Hi Wendy,

I know, I used to get migraines all the time growing up, then it got to where I would only have them one time a month (you know when that is) so I was feeling a little lucky I guess. Well, I'm not feeling so lucky right now. Today has been a good day though - we'll see how tonight goes!

Title: Re: New Clusterhead has a question
Post by CHmess on Dec 5^th, 2003, 2:39pm

25 years, Little Deb, that blows my mind!! I can't imagine. I am hoping it will be another 6 or 7 years (if ever at all) before I have to go through this again. Wouldn't that be nice! Thanks for welcoming me! You all seem soooooooooooooooooo nice!!!! I think just having someplace and someone to talk to about them makes it sooo much better! :)

Title: Re: New Clusterhead has a question
Post by thomas on Dec 5^th, 2003, 2:41pm

on 12/05/03 at 14:39:23, CHmess wrote:

I think just having someplace and someone to talk to about them makes it sooo much better! :)

It made all the difference in the world for me.