Hi I'm Casey. I'm 18 years old and was diagnosed with CH two months ago. For as long as I can remember I've had headaches everyday in the same spot. They were never just normal headaches. These ones came on all of a sudden and extremely bad. I never thought about going to the doctor or anything until I got married and my husband was always getting worried. I'm new to this site and I dont know anyone else with CH. Nobody I know understands what my headaches are like either. I'm making another appointment with my doctor in about a week and he's most likely going to send me to a neurologist and I'm very unsure of what to expect. If you have any advice or anything for me I'd greatly appreciate it.

Hi Casey, and welcome!

Do make sure you get to a neurologist, preferably a headache specialist. And get a prescription for oxygen! You don't have to wait to get that prescription from the neuro, your GP can order it for you. See the 'oxygen info' link on the left.

The neuro can also prescribe a preventative med. Verapamil is most commonly prescribed I think.

In the meantime, you could try slamming down a cup of strong coffee or an energy drink (doesn't have to be RedBull, any brand with a high level of caffeine and taurine will do) as soon as you feel an attack coming on.

Great you have a supportive husband! Greatings to him as well and tell him he's welcome here to as a supporter.

Good luck and keep us posted!

Lottie

Thank you so much for that info I'll have to talk to my doctor about it. Not too sure what they will do for me because army doctors arent usually the best. But we'll see. So far they have me on hydrocodone to take when I get one. Usually they only last 15 to 20 mins if I take that when I first feel it.

First issue: pain meds are not appropriate for cluster and suggets your doc lacks experience/training in headache. Not at all unusual.

Study this entire article so that you can talk to your doc with some knowledge. Print out the list of treaments in the second link and give to the doc--and hope he will accept your guidance!
Many of us have had the experience of knowing more about Cluster than our docs and a good one will be willing to learn from us.
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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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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Thank you very much. It's very helpful.

Welcome lass.

Be vigil with the hydrocodone. I know when one hits you will take anything to get some relief, but there are better things out there.

Most have great success with 02. You need to make sure the script says use a regulator with at least 15  LPM (liters per minute) It takes a high flow and use a non-rebreather mask. For me it usually knocked it out in 5-10 minutes.

Also triptans injectors for the really bad ones also knocks them down in 5-10 minutes.

Good luck and again welcome.

Thank you very much to all of you. I'm getting more desperate everyday to learn all I can before I go to the doctor. My headaches seem to be getting worse and worse and nothing really helps now. I've started keeping track of what time every day I get them, how long they last, and what I was doing before it came on.

Hi Casey

o2 it's the way to go.

To PFD

Iddy :)

Thank God for worried spouses! I'd been bucking through my early cycles with aspirin and occasional bottles of firoinal, usually scored at urgent care appointments on the weekend! My wife finally got me organized in my approach and my treatemnt.

Bob's given you your required reading.

A popular approach to treating CH is the 2 pronged one:

1: A good prevent. This is a med you take daily, whle on cycle, with the goal of reducing the frequency and the intensity of your hits. I use lithium at 1200 mg a day. Verapamil and topomax are also popular preventatives.

2: A good abortive. Your attack starts, now what? Oxygen should be your first line abortive. Cheap, no side effects, and I can halt an attack in under 10 minutes, typical abort time for me is 6-8 minutes. Read the oxygen info link on the left as it has to be used correctly to be effective.

Imitrex injectables and nasal sprays are both popular abortives. For now, try powering down an energy drink at the first sign of an attack. One containing caffeine and taurine, monster, rock star, etc. Many find they can abort or substantially reduce an attack that way. Strong coffee will help with shadows for many.

Welcome home and try to get your hubby to check out the supprters section. A good place for our spouses and significant others to bitch about what pains we can be! ;)

Joe

My doctor told me last time I was in that if I come back because I still have the headaches then he's referring me to a neurologist or a headache specialist so today I made an appointment for Tuesday! I've printed off 100 pages of information about treatments and medications to take with me to discuss with my doctor. So I might finally be getting something that will help with my attacks!

That's great news, no knock on the GP's but there's nothing like a specialist to work with you on the head! Wishing you luck!!!

Joe

I finally recieved my first prescriptions for meds for CH today. I was so excited to finally have something that might work. But what ended up happening today was for the first time since atleast December I had a pain free day! Lets hope theres more to come!

Let's hope the cycle is done this go round. Keep the meds at the ready! :)

Joe