Hello!

My name is Kayla. I'm 22 years old and I've been experiencing cluster headaches for just under a year now... Here's my long sob story.  ;D

Initially i started getting these bad headaches that wouldn't seem to go away with ibuprofen which is usually my drug of choice. Helps with all my other pain issues (IT Band Syndrome, Costochondritis... etc).  I had an anxiety attack and started a Prozac around that time so I thought maybe the prozac was causing these headaches. I switched to wellbutrin after talking to the doctor, but no help. Was still getting headaches. I went on for a few months like this, and stopped the drugs all together with still no headache relief.

Then they would come and go, i had a couple weeks or so of relief and thought maybe the prozac had finally found its way out of my system. (From what i understand SSRI withdrawl can last several months). But i was disappointed when the headaches started again.

I talked to my mom about them and she talked to the doctor with me. She told me then AND the doctor that we have a history of cluster headaches in the family and thought that might be what I'm suffering from as well. My uncle suffered from them for a long time, and nearly commited suicide because of them. They ended up cutting a nerve in his neck to stop the pain. According to him he "still has them, the just dont hurt anymore." My brother also suffers from them. The doctor said given the symptoms and family history it's probably not due to side effects from the drugs and probably is in fact.... clusters.

I feel like a zombie when it happens, i can't think of anything else besides the pain going away. Often i'll be dragged somewhere with my boyfriend (like grocery shopping) while one is occuring but i am completely useless. I dont want to think about anything and often get irritable because he's asking me about groceries and i tell him I DONT CARE what we get i just want to go home and get rid of this headache , which often puts us both in a bad mood.

Nothing over the counter helps. At all. I take 800mgs ibuprofen on a regular basis for my ITBS and it doesn't come anywhere NEAR touching my headaches. I thought for awhile maybe it was sinus headaches or migranes and tried migrane pain killers and caffiene but those did not help either. I AM often able to fall asleep (after laying awake for a long time, writhing in pain) but even as I wake up (no matter how long ive slept) I'm still in horrible pain. I often find myself waking up and think, oh no, no, please go back to sleep, no pain, please... because I know "the beast" is still waiting for me. It's always in the upper-right quadrant of my face. You can usually tell when it's happening because i have my hand pressed over my right eye, moaning and groaning... or with my eye burrowed into a pillow or something in hopes it will stop it, but it never does. Sometimes i have "shadows" of pain before along my eye/top of my nose and my brow... and sometimes it comes out of nowhere. So far I haven't been able to find any kind of "schedule" with them but i will often get them late at night before i get off work, which is at 2:30 am. And i have several attacks that seems like id ont get any relief until 12 hours later, at least.

The Doctor hasn't prescribed me anything it (>:() and I'm thinking of asking him for a referral to a neurologist. My brother takes some kind of preventative drug for while he's "in season", if you will, and also takes vicodin to try to take the edge off while he's actually having a cluster, but as of yet i haven't convinced my primary care doctor to give me anything for it (and now for the moment i'm not on insurance.) I've been pain free for about 2 weeks now but I never know when it will strike!  [smiley=hammer.gif]

Anyway, I'll stop now, since this is long enough! LOL
It was nice to run into this site, where people know how it feels.... look forward to making friends and talking to you all  ;D

Welcome!

OTC pain meds won't touch Clusters so your Doc needs to prescribe both a preventative and an abortive. There are many treatment options out there and if he is unwilling to work with you to treat your CH then perhaps a trip to a neurologist is in order.

Take some time and read the O2 paper linked on the left hand side of the screen. Many people, including myself, find great success with O2 as an abortive.

Bill

Hi Kayla,

I like your emoticon selection for "but I never know when it will strike!"   ;D

Whew, sounds like you and your brother could REALLY benefit from info and advice to be gained here.

For starters I'll mention 2 things that there is a wide consensus about amongst message board members:

• Try to make sure any neurologist you end up seeing is a headache specialist.
  We see time and time again that run of the mill neurologists typically don't know JACK about CH, and aren't helpful.
  

• There are powerful ways to abort a CH attack, Check out the oxygen info link on the left of this webpage - it details what is probably the most popular treatment here.
  

One more aside - Just going thru and reading replies to other "getting to know you" topics is a good way to get indoctrinated quickly.

It's not wise to rush about trying this and that for a condition which has not been diagnosed by a doc who knows his stuff. Find a good doc....
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Start to do some basic learning about CH, on the assumption this is your problem, so that you have some knowledge to guide your discussions with the doc.
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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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The PDF file below is also good.
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Then explore the buttons, left, starting with the OUCH site and its many internal links.

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Hi Kayla and welcome.  Yes, you are still new to the cluster world and your cycles will most likely take several years to show themselves fully.  I started around 18 and couldn't figure it out until about 40.  OK, I am not the sharpest tool in the shed, but that story is actually fairly common.

What you describe does not totally convince me that the pain is cluster headaches, but could be.  So a knowledgeable doctor diagnosis may be appropriate.  We don't diagnose on this website.

Read all the stuff on this site if it turns out to be clusters or just read it anyways and you can start to get a feel for classic symptoms and then see if it matches.  Many times, just as you start getting a lot of info,  the episodics among us will end our cycle and forget about it for a year or 2 and get surprised down the road by it again.

Oxygen works great for most people here if done correctly.  Caffeine/red bull works too, but may suck for you night-timers and keep you up all night.  Try the melatonin cocktail people talk about here.

Check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for 'alternative therapies' that should be mainstream.  Works like a champ for many of us, no side effects if done well.

Good luck, stay in touch. :D

--Shaggy