Hi: 

I've been a lurker for a couple of years.  One day when I was 7 years old I was walking up the stairs and suddenly an invisible ax split my forehead...as I laid on the top step screaming my daddy scooped my up and put me into bed and had me chew on a few aspirin.  Daddy understood...

That was nearly 50 years ago.  All my life I've had clusters and classic migraines.  Most of my life I've known the difference between the two, Since I didn't know the term cluster till a couple of decades ago I always referred to them as "screamers" to differentiate from classic migraine. 

There are a lot of things I've learned since age 7.  Screaming into pillows, crying, pacing, and desperately banging my head against the headboard only triggered a nice accompanying classic migraine.  In the recent past when I've gotten screamers if at home I simply medicated myself to sleep through it, if at work or out and about I could only take prescription ibuprofen to subdue the screamer to a publicly manageable level.  A few times I had to leave work or school before I was overcome by it.

If you know me well enough you can tell when its coming on, I turn gray and facial expression becomes neutralized because I've learned to keep my emotions at a very level place so that I don't complicate the screamer with neck tension.  Honestly to look at me you would never guess that inside I just want to curl up in a closet to scream and scream and scream...

any way, last year I went to my doc and said, "I am tired of narcotics I pop at the merest hint of heat behind the eye to stave off what may or may not become a screamer, I just want something that will make it bearable when I know that little nagging pain is definitely about to become a screamer..."  He got that knowing look in his eye and pulled out his little white pad saying, "the pharmacist will tell you that you don't need to put this under your tongue, ignore him and put it under your tongue." 

Maxalt changed my Life!!!  It used to make the screamer go away within about 30 minutes but last year I had a strange reaction to it, it was like a serotonin overdose.  Made me confused, shaky, weak with tremors and collapsing; the E.R. doc told me not to take it again.  In between then and the next appointment with my doctor I had another episode, I took the risk but cut the tablet in half first.  Half a tab didn't make the screamer go away but it cut the pain in half which is endurable for the 2 or 3 hour duration of the thing.  When I got to the doc he told me I did exactly the right thing and we decided that since I'm charged the same amount of money for 10mg as for 5mg I would continue to to get the 10mg and cut them in half.

The episodes are not predictable sometimes I'll have several and other times just one or two.  There was a few years in my teens and in my twenties when I was episode free.  Lately I've noticed that I will get a series of screamers when we have several storms backed up.  A few hours before a storm a screamer, when the storm breaks the screamer leaves, as suddenly as a switch being turned.

Wow, So glad to see you have found the best web-site in the world for us!!!. I have learned so much from this web-site. I'm a breast cancer survivor. Mastectomy. That was a breeze compared to CH's. Try Red Bull concentrated as soon as you feel one comming. It works, keep them with you. Cuts down the amount of time your ch's stays. Get on Verperimil at least 320mg, but be careful if you have high blood pressure. some kind of triplane meds. And last but least I hear 02 works. I yet had the opportunity to try, But I'm working on that alot of info on this web-sit. Your not alone and most important your not crazy. I heard that alot with Doctors.

sueandrew

sorry you guys are going through this! My 2 cents is find a "headache specialist" in new york! there are many! could make ALL the difference!
good luck
anthony

mjones216 wrote on Apr 23^rd, 2010 at 11:49am:

There is a "letter to employer" on this site that can be printed off and shared with employers, colleagues, family, loved ones, treating doctors, etc.  Very helpful and well written for just about anybody to understand and empathize.    
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Dave Wolk, Pitman NJ, not far from Philly...cheesesteaks, pretzels, and tastykakes. 47 years old, 15 years in the club. Joined and made my first post yesterday, but floated around the site for quite a few years.

Hi everyone !!!!
Well I've just found this site today !!!! 
I'm Eric I'm 43 years old, 8 kids 6 boys, 2 girls aged between 23 and 14 and a beautiful grand-daughter who's nearly one !!!! single although I've met the most beautiful girl in the world in Susan and we've been seeing each other for a few months now !!!! ( she doesn't know what she's let herself in for !!! lol ) suffered with C H for the last 27 years ( since 1983 ) was only diagnosed in 2008, I'm 6.5 months into my latest attack ( the longest I've ever  suffered ) they normally last around 6 -8 weeks and then pain free for a year or so !!!!
Maybe turning from episodic to chronic 
I live alone and looking forward to speaking to people who can understand how hard things can get.
Speak soon 

Hi! I'm Amy! I'm 23 and just started having these awful headaches about a month ago. My dad and sister both get cluster headaches and have been diagnosed and I just was last week by my doctor.
I had NEVER experienced pain like this, but once my doctor said 'cluster headaches', I started googling. Wiki says that they're nicknamed "suicide headaches". Of course, this makes TOTAL sense to me. I definitely considered that as I was pacing and screaming at 4 am and my poor fiancee stood by completely helpless and unsure what to do for me. Had a few really exciting ER visits... Not much relief there at all. Nothing seems to help except reminding myself that it won't last too incredibly long and that I won't necessarily die, I'll just wish I could. I'm honestly surprised that my eyeball hasn't exploded yet... It always feels like it might.
It was really cool to find this website. I didn't realize how many people suffered this pain. Is there anything worse? I can't think of any pain worse than these headaches. It's cool to have support, even if it's only online.

I have an appointment with a neurologist in 2 more weeks. It's been slow going trying to figure stuff out! I switched doctors three times before I finally got to this one who gave me some answers and referred me to the neurologist.
My dad's given me some ideas here and there. He said for him, none of the medications worked, or if they worked the side effects were so bad, he wasn't sure how much he wanted to continue it because it didn't ALWAYS help.
So far, what I do is wake up, immediately go drink as much water as possible, have an energy drink (one of dad's suggestions, which helps) and take a LOOOONG shower. Sometimes walking around seems to help.
The doctor did suggest oxygen but I wasn't sure how expensive it is. Is it bad? I'm on a budget... especially after all the tests they did and all the doctors I've seen and the ER visits.
What doesn't work is their migraine cocktail in the ER. I think its decadon (or something like that, it's a steroid), toradol?, reglan, and phenergan. That combo does NOT work. Narcotics definitely don't work. I just get nauseated on top of having this skull splitting, eye popping migraine. They're always on my left side and always between 2 to 4 am. I've never had one during the day. Tylenol, ibuprofen, motrin, BAHAHAHAHAHA. Yeah right... So far...nothing has worked. They put me on compazine and the next 2 days in a row I still had them. They're trying a new nasal spray. I actually just got that Rx today, so we'll see how it works when I get one again (hopefully not anytime soon). I forgot what it's called but its a triptan? I think that's what they said. I'm a newbie. I'm learning.
I've been terrified to go to sleep because they've never happened any other time. I hate worrying about going to sleep and wondering if I'm going to be woken up by one again. They've never lasted more than 3 or 4 hours before, never shorter than about 45 minutes. The very first one I had was only about 45 minutes. I thought I'd had a stroke or something because my eye felt so weird.
I'll definitely let Matt (the fiance) know about the supporters section. I read him one of the quotations from the front page and he said it just sounded way too similar to how he'd felt taking me to the ER. I was ready to jump out of the car and run into the ER, yelling at him because he wasn't going fast enough.
Luckily, I work from home. The days I have these headaches, or the mornings after, all I can do is sleep, like it's completely sucked the life out of me. I'm exhausted, so I miss work. I do yoga, regularly, since I work at a yoga center, and thought that would help, but so far, I've only been experimenting with things for a month or so now, since they started. I keep a journal of what I ate on the days that I get the headaches and what I've done that day, maybe there'll be a pattern I can pick up on, but it never fails that they come at 2, 3, or 4 in the morning and feel like someone drove an ice pick into my eyeball and left it there. The first time I rolled around screaming until it suddenly was gone. I was so relieved. The feeling when they wear off...holy COW that's amazing. Nothing could feel better than that.
I'll take ANY suggestions I can get! I'm desperate for any relief.

Wow! I was expecting the oxygen to be FAR more expensive. That's something I could afford...even without insurance.
As I started explaining to my concerned friends what was going on, I found out one of them also has them! He made a couple suggestions on medications that he takes. Imitrex is one of them, I think. But he said his doctor will put him on steroids during his cluster periods.
I was on steroids for a long while over the last year, because they thought I had lupus! Turns out I'm just a young person with arthritis, had mono, and get cluster headaches! So, I'm starting to wonder if that prolonged my getting them. Or maybe even triggered them once I stopped. I'd never had migraines as a kid. My dad said his started when he was really young. My grandpa's did too, but none of the other women in our family have ever gotten them before. Emily, my sister, hasn't had any in years now, but she got them when she was young. LUCKY! She doesn't even take medication anymore because its been so many years since she had one. I'm jealous. I HATE nasal sprays. Seriously. But I think I'd hate giving myself a shot more. Then again, during a headache, I don't think I'll really care at all...

Thanks for all the info! It's something to take to my doctor for help!

I already have arthritis in my knees and back, and after some reading, I've found that steroids can damage the joints further, so it sounds like that might be a bad idea if I want to still be walking at 40.
Got my Rx, it's Imitrex. I'm sort of excited to have it and see if it works. Haven't had a headache yet, so based on my calendar, my very first cycle was about 2 1/2 weeks. That's not SO bad. And I get them every other day for the 2 weeks. But the day after, I may get 1 or 2 more. I'm hoping I won't have any for a while, but in case I do...I now have Imitrex... Watch out headaches. Ima knock you out.

The only med that makes sense to me is the steroid. We tend to use that as a transitional drug while we wait for our prevents to build up in our system. Our more common prevents being Verapamil, Lithium or Topomax.

For pain management, give up on the pain meds. The kind of pain CH'ers experience does not generally respond well to pain medication. Read the oxygen onfo tab on the left. I've been a CHer' for 32 years and haven't found anything that works as well or as quickly as oxygen does. I can usually abort an attack in under 10 minutes.

Imitrex injectables or nasal spray help many on the board. Try chugging an energy drink at the beginning of an attack. Red Bull, Monster, any that contain caffeine and taurine. Many can abort or reduce an attack that way.

Sadly few doctors have much info on CH. It's a rare condition. This means you ahve to educate yourself and become your own best advocate.

Joe

HiYa


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My name is Brian but I go by Greggles,

I'm 23, married, and from Grand Rapids, MI

I was diagnosed with chronic cluster headaches last year but have been suffering from them since I was a child. My mom used to think my headaches were just me trying to get attention and because of that It took almost 20 years to get them properly diagnosed. Growing up with CH was truly a curse but it was a bit of a blessing as well, I had an abusive stepfather who was heavy handed to say the least and the years of torture I had already endured allowed me to move past the pain he inflicted because he would have never been able to doing anything close to what I felt on a near daily basis. I also was afraid of doctors and hospitals (still kinda am afraid of hospitals) because of what happened to my dad in the past so I went years without going to a doctor or an ER to try to receive some sort of aid while having an attack. Over the years attacks became more frequent and would last much longer and I still refused to go to a hospital. My wife was actually the one who got me to goto the ER during one of my attacks, probably because she had never seen me cry out in pain like that ever before. Over the course of a few years of seeing doctors and a neurologist I've run the gauntlet of treatments and most that work for people have not helped me in anyway. The neurologist had me on verapamil, oxygen, depakote, lithium (which screwed me up the most because of a previous experience with it that caused toxicity),  my primary care physician tried nortriptyline, visiril, anti-depressants. And then the ER doctors tried imitrex which reacted violently with my body and closed my throat up, toradol didn't do anything nor did ultram/tramadol, and steroid treatment just made my headaches angrier. And the icing on the cake is when some cocky ER doctor/nurse doesn't listen to me and tries IV benedryl- they may have well have been pumping me full of pcp with the violent hallucinations and mood swings that creates (I can't even take benedryl for my allergies). Dilaudid shots work but like everyone here has probably heard I hear about "rebound headaches" all the time yet never have experienced one from a non-triptan med. Opiates have worked for me for years with the curse, as I was afraid of doctors I turned to heroin/methadone for a few years to deal with the pain and it did, however I naturally became a junkie. After an accident with it that left me dead for a bit and a date with a bag of narcan IV the junkie in me died. I even from time to time would try heroin again when attacks were flaring up and I had noticed I didn't experience withdrawal or any cravings for it like in the past, the few doctors that know about my OD would never administer a shot of dilaudid to me however despite the drug being much stronger than heroin I do not go into cravings/fiend mode from it and it actually does help me so I can get on with my day.  Sometimes when I have to goto the ER I get labeled as a drug seeker and faking pain symptoms to get a fix I will even appease them and have them try a non-narcotic method which so far every time has never worked and just wasted my time, their time, and their resources and caused more agony than they could comprehend .

I hate living in chronic pain like this, I'm a burden on my friends and family, I can't hold down employment, and half the time I can't do any of the things I love doing. I'm going to apply for disability despite my feelings about it. I wear tinted prescription glasses for my light sensitivity and tend to distance myself from people because I don't want to let them see me during an attack. However I'm hoping that since I found this site maybe someone on here will say the right thing that makes life for me a little more tolerable.



My scary picture of me on my oxygen
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