Hi, I'm new the board but I feel like its time I started to figure out these stupid headaches! I've been suffering since I was 16, every year around summer/fall. I'm only 20 now and going to bed literally scares me because I have no idea if Ill wake up the next morning with a headache.. I work full time as a bartender and I am also a full time student majoring in physiology, I dont have time to spend all day lying on my bathroom floor trying to pull my hair out.. its just so frustrating.. i have finals tomorrow and here I am trying to keep myself from vomiting. These headaches have now put me in the hospital twice and cost me HUNDREDS in Imatrex shots, Fioracet tablets, and Frova. I simply just wish I could understand.. These demons feel like theyre killing me.. :'(

Adulthood has its down moments, no?

Welcome to ch.com. Sorry you have to be here, but glad you found us. Start reading.

I thought I was too young also when I first experienced CH's at age 11.  You have more info available here on this website than any resource in the world.  As Brew stated...start reading.  You are not alone.  We truly understand.  Hang in there.  It will get easier as you become more educated.  ;)

-Gregg in Las Vegas

Hi Meredith,

I'm very sorry for your pain. <Hugs>  Mine began when I was 16 as well and I'll be 38 in 5 days.  I understand your struggle and want to emphasize trying to live your life as best you can during your pain free time.

Read as much as you can on the meds page of this site and try not to panic.  We're here to help!

Take care,
:)mel

Where did I read, "Why? is the most painful word in the English language?" And a big waste of time, now.

You have a doc, it appears. Key question: someone with skill/knowledge/sophistication treating Cluster? Not a nice guy, not easy to reach, but effective....

You will be with "our friend" for many years and learning how to effectively cope is the critical goal. Most of us have a good life because we have achieved some grasp of how live with, while not yielding too much.

So, tell us your medical history, who and how are you being treated? Are you on a preventive as well as an abortive? What?, dosage?, how long using each?

Once you are sure you have the right doc, your attention here shifts to learning & learning: not why? (am I suffering) but how do I cope?

We've got lots of info to share but need some sense of what you want--some specifics about what would be helpful to you, now.

Explore but buttons (left) starting with OUCH. Then the PDF file, below.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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And more to come as we start sharing more.....

Welcome!

   

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Welcome to the board. Yes its a lifetime ailment no it does not have to rule your life. With my prevent med, lithium for me, verapamil is the most common first line prevent, and my oxygen to abort the atacks., I can't recall an ass-kicking hit! A neuro who knows ch is a rare item indeed. Educate yourself here and find a neuron who will work with you.

For now buy a couple cans of redbull. When you feel an attack coming on chug it as fast as you can. Many can abort or at least really reduce an attack that way. Glad you found us hope we can help you.

Joe

Why? To make you honey-badger strong! (But seriously, I know it sucks right now but in the long-term, this condition turns you into one tough cookie with the right attitude and support.)

Hi guys new here luis is the name. I can recall getting my first attack when i was like 6 or 7, am 23 now. I remember what trigger THAT  attack. They used gasoline to clean the floor at my school. My mom though says that ive had headaches when i was younger than that. Now, because my father has full blown migraines the doctors where expecting for one of us to get migraines or at least clusters and i was the one chosen. Again i am glad that i am not the only one dealing with the beast :)

Meredith,

welcome.  The first thing I would suggest is that you find a Dr who is knowledgeable in CH.  You obviously don't have one!  Any Dr that prescribes Fioricet for CH definitely is not conversant with CH.  When I was first diagnosed when in my early 20's after suffering with them all through high school I was put on Fioricet and another similar pain killer.  I got hooked, and spent the worst 3 months of my life getting myself off of them.  They did NOTHING for the pain.  I just didn't care. They are NOT worth the risk!

You need a Dr who knows about good preventatives and good abortives.  Immitrex is used by a lot of clusterheads, but I would strongly recommend you read the Oxygen Info button on the left of the screen (in yellow) with the caveat that you purchase your own regulator and increase the flow rate to at least 25 lpm.  I personally was able to kill a hit within 5 minutes if I got to it right away, and in 8 mins if it had gotten entrenched. 

All the best,

Jerry

BTW, I consider that I'm to OLD for them, but they are still here!  So what?  Life goes on and how you deal with it is a choice.  Live between the hits, don't feel sorry for yourself, but find someone else you can help instead.  That will do more to make you feel good than any painkiller!

Tim here at least 19 years walking this path just found this site myself last week and can't get enough. Don't sound like you got the right meds. I use imitrex and you should check out the info here about imitrex when I think back on all the imitrex I've taken that I didn't need too it just pisses me off but any way find yourself a good Dr.

To both Luis and Meredith, it sounds as if you are just beginning to explore the necessary means for fighting the beast regardless of how long you have been having these. Here's some general advice we follow ourselves. Tell us how you are doing:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance