Hey all,

Possibly a new member here, after getting the worst headaches of my life last night. I'm 28, male.

I've been visiting my doc due to having very regular headaches for last three weeks (daily like clockwork), but they were fairly mild and mainly annoying..

My doc prescribed Butalbital which seemed to help until I ran out a few days ago. After not taking them for two days I was completely devastated by the worst headache last night and ended up in ER trying to figure out what's going on. 

After a clean CT they told me to have a more serious conversation with my doc about CH and figure out next course of action. Sent me home after my headache subsided in a couple hours only to come back full force some 4 hours later.

So here I am, stiff necked, tired and reading about all the symptoms that spell out all the details of last night.

I'll be honest, I'm looking forward to this being my only post here, but am also glad that there is such a great supporting community out there for those who suffer!

Thanks!

That is exactly how mine started back when I was 15: a five minute long annoying pain in my temple every morning at exactly 9:20.  Docs at the time said it was a sinus infection.  HA.  They didn't get debilitatingly bad until I was around 21, and even then it took a couple of cycles until I was properly diagnosed.

I'd advise you to look into:
- prednisone and verapamil to try to lessen the frequency of headaches
- Imitrex and oxygen to treat the headaches you do get
- Get a referral if needed and see a neurologist who is good with cluster headaches (see START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for doctor recommendations).
- start keeping a daily log of what meds you're taking, when you get headaches and what you try to get rid of the headache, as well as what you were doing when you got the headache.  This way you can track what meds seem to work to prevent and kill the headaches as well as finding what triggers your headaches.

Hi Serd and welcome.

AJ has given you some good advice.

For any complex headache you need to see a neurologist who specialises in headaches for an accurate diagnosis and effective treatment.

Where in the world are you? We may be able to help direct you to suitably experienced neurologists.

Butalbital, (firoinal) was the only pain killer that ever helped my CH. That being said, there is a high potential for addiction, especially with a condition like CH which tends to get more severe with time. It should NOT be a frontline treatment. I haven't used butalbital since the early 1980's. There are so many more effective treatments out there now. Your best bet is a headache specialist neuro, with experience treating CH. If it turns out you have CH don't lose this website. It's the most comprehensive collection of knowledge on CH in the world.

I use a 3 pronged attack to treat my CH. I'm male, 51, a 33 year sufferer, episodic. Many use a similar program, although it seems everyone's is slightly different. Typical of the beast.

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attacks. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally there are the alternative methods for dealing with CH. They are outside of mainstream medicine but are providing relief for people when all else failed:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi Serd,

Like Giussepi/Joe I'm a 30+ year CH'er.

I implore you to not make this your only post here because this is exactly where you'll find out how to get around the rampant ignorance in the medical field regarding CH and find max relief, as has been the case for me and for so many others.

You've been advised very well indeed so far, and I'll just add a link to a pertinent Newsweek article about clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hey all, thanks for the welcomes and all the info.

Saw my doc today who referred me to a Neurologist - Marina Kasavin at UCSF in San Francisco, CA.

Also gave me a shot of Hydroxyzine and Demorol to chill me out at the office and a prescription of Sumatriptan Succinate 100mg (of which I got 9 tablets).

Said she wants to hear what the neuro says before we do anything like O2 or any other meds.

Anyway, I'll keep updating.

Once again, thanks for the support in such a crappy time!

You will pardon my frustration with the medical profession...and feel free to relay this info to your doctor.....

Narcotics.....no problem...we'll prescribe those like there is no tomorrow......who cares if they are highly addictive, cause rebounds, are bad for the body......




Oxygen...whoa...that's bad sh$# man..........must see a specialist to get something so freaking dangerous they let high school kids haul tanks of it around to welding class.....

sigh........their logic completely escapes me...sigh...

Rant over. ::)

Joe

At risk of stepping on any toes here. Like Joe said before, you may want to speak to doc about imitrex nasal spray or injects as the pills usually take too long for most CHers. By the time it starts to work you may be in the middle of a full blown K10. I too share in the frustrations of the narcotics as they do not understand that most dont even work for us and are much more harmful than the O2 could ever be. Best wishes. Stay with us. We'll help you get to where you need to be in this battle.

Pfunk 8-)

Well at least your doctor is referring you to a neurologist - that was a good call because it is extremely common and extremely dumb for doctors to prescribe the pill form of imitrex for CH instead of what actually works, which would be the inhaler or injectible forms.

Now we'll hope that's a headache specialist you've been referred to instead of a rank'n file, garden variety neurologist because they are also generally clueless. :(

You're not the first one today to report being prescribed pill form - just a typical day around here. Sigh.