Not really sure what to say so, I'll just go for it.

I'm 26 and my clusters started 2 months ago.  They started off lasting only seconds.  Woke me up from sleeping and such.  I drank Friday night, and I've had a stabbing pain in the top of my head since Sunday.  Ear aches, neck aches, and fatigue have been my big effects besides the pain.  Although, I don't think that mine are quite as severe as some of the others here.  Mine are slowly progressing and getting stronger.

Besides that, I live in New Orleans.  Work at a mortgage broker firm.  Big family.  Yadda Yadda Yadda.  Nice to be here. 

I've already had people reach out which is nice.  Can't wait to learn more to keep them under better control.

Hello, Jess, and welcome! Having read both of your posts, I am not clear how you know you have CHs. Did you come to this on your own, or were you diagnosed by someone who is experienced in headaches? I ask because there are a number of conditions that can mimic CHs but aren't. That can usually be good news since many of those other conditions actually have some specific interventions. Check out Indocin responsive headaches, for example.

The way you describe the pain is not typical of a CH, but we have found nothing is typical when it comes to CHs. Tell us what you are doing when you get hit. God bless. lance

Welcome to the board, really glad you found us. Like Lance, I'm concerned about your diagnosis. This is a list od sufferer recommended doctors near you:

Louisiana

Baton Rouge:
Dr. Steven Zuckerman
Covington:
Dr. Srinivas Ganji
Lafayette:
Dr.Steven J. Snatic
Metairie:
Dr. Daniel J. Trahant
New Iberia:
Dr. Timothy F. Himel

Working with a headache specialist, especially early on in your diagnostic phase, is critical. There are hundreds of headache types, and treatments for one can be harmful to another! Then there is the very real fear of masking an underlying, potentially serious condition, with well meaning advice! :(

Let us know a little more about where you are in the diagnostic journey, if at all possible work towards a referral to a headache specialist neurologist. There are too many effective treatments out there to just "grin and bear" it. Wishing you speed on your diagnostic journey and some pain free time soon.

Joe

Guiseppi wrote on May 16^th, 2013 at 8:19am:

Welcome to the board, really glad you found us. Like Lance, I'm concerned about your diagnosis. This is a list od sufferer recommended doctors near you: Louisiana Baton Rouge: Dr. Steven Zuckerman Covington: Dr. Srinivas Ganji Lafayette: Dr.Steven J. Snatic Metairie: Dr. Daniel J. Trahant New Iberia: Dr. Timothy F. Himel Working with a headache specialist, especially early on in your diagnostic phase, is critical. There are hundreds of headache types, and treatments for one can be harmful to another! Then there is the very real fear of masking an underlying, potentially serious condition, with well meaning advice! :( Let us know a little more about where you are in the diagnostic journey, if at all possible work towards a referral to a headache specialist neurologist. There are too many effective treatments out there to just "grin and bear" it. Wishing you speed on your diagnostic journey and some pain free time soon. Joe

Some one finally listened.

         Potter

Hey guys,

  Thanks for your concern.  I've seen 3 doctors who all say that I have it.  I've had ct scans done and all.  Made sure I did before I cancelled my insurance cause I can't afford it.

  I've been doing a lot of research because it is so painful and I just want it to stop.  I've started taking D3 vitamins, and I read that there was something in Red Bull that helps too.  Believe it or not, it subsided slightly. 

  I appreciate the concern for other possible problems.  Honestly, everyone feels confident that it's clusters. 

  They started as a burning pain above my left side ear about the size of a baseball.  It lasted for only seconds.  A week later, it happened again.  Since then, the burning or stinging pain has been on the top of my head while the left side is more aching now.  I still have the soreness and aching left over from Sunday.

  Please let me know if you hear anything.  Thanks.

Oh, and when I get hit, it's not totally unbearable yet.  Asprin intensifies it, so I stay very far from it.  Dark room, no noises, and most of the time I try to sleep through it.  Obviously, I can't even get to sleep.  They are getting worse fast though, so I need to find something to disarm it sooner than later that doesn't require doctors or prescriptions.

Hi Jess,
Pop off to your local drug store, and pick up some Melatonin
tabs. They will help you get some sleep and are known to
help in CH in some folk. Also avoid alcohol and foods containing
nitrates. hoping this will be of some help.
Hoppy.

jess_m wrote on May 16^th, 2013 at 11:33pm:

Oh, and when I get hit, it's not totally unbearable yet.  Asprin intensifies it, so I stay very far from it.  Dark room, no noises, and most of the time I try to sleep through it.  Obviously, I can't even get to sleep.  They are getting worse fast though, so I need to find something to disarm it sooner than later that doesn't require doctors or prescriptions.

I don't know, Jess. You're not going to like this, and I really don't like writing it, but from your description it still sounds more like something related to a trigeminal nerve disorder, or something. If you take the CH quiz at left, I think you'll find some indicators that are not "normally" part of this disease: for the most part we are neither photphobic nor otophobic, and aspirin tends to be chewed to the point of creating ulcers until we find something better. I'm not questioning you, I'm questioning your docs who probably know less about CHs than you do. Still, if it is CH, there are ways to manage the beast. While Red Bull chugged fast at the first sign of a hit can help, its more useful role is in conjunction with O2. Read the O2 link at the left. Good luck and keep writing to us. blessings. lance

Thanks Wimsey.  I looked it up, but it still doesn't sound right.  I'm not really getting in my face as much.  I get some around my nose but the pain that is staying stationary is on top of my head.  It feels like a bruise from someone pulling my hair too hard.  I haven't had what may be a cluster attack since Sunday, but this pain is just staying there.  I am also getting aches behind my ear that kinda feel like an ear infection but the doctors all said that there is nothing there.

I do get a pain similar to what you described, "The bruised head from a hair pulling". I've had my hair pulled so hard in a fight that my scalp bruised...in my previous occupation in law enforcement......I get a similar sensation on my scalp after a really bad attack. It'll linger for several days after the attack.

I'd try chugging the red bull with a couple of excederin migraine. I use this as an emergency stop gap if I get caught away from my meds. Not something you wanna use a lot because of the rebound issues with over the counter meds but as an occasional stopgap it might get you through this session.

Joe

Joe,

  I can't thank you enough for your post.  From the way the others were talking, I thought it may be a misdiagnosis and there was something else that was seriously wrong.

Thank you so much!

By the way, just finished an awesome 2 week bicycle ride from New Orleans to Memphis. What beautiful country y'all have down there...other then the tornadoes I mean! ;)

Joe

Tornados... Hurricanes... oil spills... it's home though.  Thanks

Good news!  After two weeks the soreness on top of my head is gone.  Still have aches but have been cluster free since the same 2 weeks ago.  I'm a newbie with clusters so they are still sparatic not incredibly strong. 

Thanks for all the advice so far.

great news, here's hoping it continues!

Joe