I am so glad to find a forum where people know what the heck I am going through and talking about. I wish I could say that my doctor understands and would quit pushing the "probably just a tension headache" on me.

I have had these for about 2 years (very mild) and would always put off going to the doctor. Soon remission would come around and I would forget about it.

I would have to say that remission stopped this week. It has been absolutely horrible. I have never had any this bad. I finally stayed up one night in pain and called my doctors office at 7:30 and pleaded for an appointment. I did suffer from sleep apnea (huge tonsils!!) and had a tonsillectomy and partial UPPP surgery to fix the problem (guess it wouldn't be called a UPPP anymore..). Surgery was successful and no longer sleep with a CPAP. The best advice I got from my doctor was to see the pulmonary specialist again to make sure I am getting enough oxygen :(

I'm about to scream and slam every door in my house as well as my head against every wall. I must say that tonight has been one of the worst ones ever. I can largely say that alcohol does not help me at all! Tonight I met a friend for a birthday party and although I was not planning on drinking, I did take a shot with her... BIG MISTAKE. It seems that about 15 minutes after the alcohol hits my throat I get a horrible feeling and about 2 seconds later I want to scream.

I cannot imagine living with this forever... I seriously want to rip my head open and put some ice in there.

Sorry for the rant.. I know everyone else is going through this as well!!

I am curious however - does anyone else only have vision issues in one eye? I wear a contact in my right eye - the same eye I would like to rip out of my face at the moment!!

You haven't said whether you have been diagnosed as having Cluster. There are many, many conditions which appear to be cluster but which are not, in fact. Proceeding with an assumption can be misleading and a real waste of your energy.

If your doc isn't experienced with complex headache disorders, then the first step is to find a qualified 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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See if this article gives you some insights:




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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See the PDF file, below.

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Hi Bts001 sorry you are going through such a hard time.

1st I would suggest you get a second opinion or request a referral to a neurologist just in case, if your doc really cares he'll do what's best for his patient and give him the referral.

For your info here is a good article on the different types of headaches, there are more than people would normally think...  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

For more detailed info on CH see this link
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
and
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I hope you find some relief soon!

Quote:

Tonight I met a friend for a birthday party and although I was not planning on drinking, I did take a shot with her... BIG MISTAKE. It seems that about 15 minutes after the alcohol hits my throat I get a horrible feeling and about 2 seconds later I want to scream.

I agree you must find a good headache specialist for a diagnosis. Abortives that work on clusters (O2 for example) can have little to no effect on other types of headaches (like migraines). Also, abortives that work for migraines are too slow acting to help with a cluster attack.

Regardless of the diagnosis, however, it seems alcohol is a trigger for you. It is for many of us who know we have clusters as well. I encourage you to stay away from those things you identify as triggers as much as you can. Other triggers can include rest, body position, chocolate, exertion, sulfates and sulfides, etc. Each of us is different but if you keep a headach diary of sorts you can soon spot those triggers you want to avoid. Good luck, and God bless! lance

Bob's right, the initial diagnosis is critical to an effective treatment regimen. You're sure leaning towards CH from what you've described so far, but not to worry, I've managed them for 32 years and haven't torn my eye out yet! ;)

Start a headache diary, make it as detailed as possible, when they start, how fast they build, how high they build, how long they stay at peak, how fast they go away, the kind of pain, stabbing, throbbing etc. Identify triggers, list what you've done that has and hasn't provided relief, the diagnosis is often in the details.

For now, when you feel an attack starting, chug an energy drink down. Rock Star, Monster, any containing the combo of caffeine and taurine. Many can abort or at least really reduce an attack that way. I prefer sugar free Red Bull just on taste.

Ice packs at the base of the neck on the affected side brings some relief. Some prefer hot packs instead of ice, it's a trial and error thing. Avoid alcohol, for many it'll cause an attack very quickly while on cycle.

If it turns out to be CH, don't lose this website!!!

Joe

Yeah BTS, nice try on the alcohol :D, trigger for most of us here.  I think before I knew what I had I would have alcohol and pay the price.  Once I figured it out, I totally avoid anytime I am even close to my cycle.

So don't sweat the cluster headaches, just get prepared to battle.  Oxygen and caffeine: yes!!  Find a preventative medicine and an abortive you like and have them on hand.  There is a lot of info here, enough for you to manage your CH's if that is what you have.

Go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE for alternative treatments that work remarkably well with (dare I say??) no side effects.

In conclusion, you are not a 'victim' of CH you are just a recipient and you can manage effectively with some serious effort.  Pain may sneak through every now and then, but you will figure it out.

--Shaggy :)