This is my first post, i having been reading all i can in the last few days but still have questions. On monday i was playing a game of chess in my garage and began to feel preasure building behind my left eye and in my temple within a couple minutes i was in the house on the couch preasure still building i went to my bedroom and tried to lay down. I tossed, turned, sat up, layed back down, tears flowing from left eye but at time coming from both came back down stairs about an hour later i'm told. By this time the pain had reduced some but still the tylenol nor the excedrin migrage have done nothing. My headache started just after 5:00 and i went to the ER at 11:00 the pain droped again to just being uncomfortable just before the cat scan which came back normal. Since monday i have had a semi constant preasure behind the eye, in the temple, and behind the ear all on the left side. I've had a few headaches before and after monday but none near the pain level or length of the one monday. The ER doctor mentioned cluster headaches and told me to follow up with my regular doctor who could not fit me in so i spoke to his physicians assistant yesterday who said i have text book cluster headaches. The headache monday seem to be everything i have read, but nothing to that level again. Is the preasure i feel a shadow? Will they become more regular like most of what i'm reading says,  On the kip scale monday was a 10 but nothing worse than a 5 or 6 before or after and they happen with in a pretty close to the same time give or take an hour. Any advice will help thanks

rick

It's impossible to make a diagnosis on the basis of a couple of attacks but they are a sign that you would be best served by starting to seek a headache specialist. Avoid, if at all possible, a doc who does not have training and experience in what is a small but very complex area of medicine.
---------
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.
========
You can help by starting to learn some of the basics of Cluster. This will help guide your discussions with the doctor.
---
 
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]
=======
Please don't start playing around with treatments until you have a good understanding of what you are working with.

You could benefit from exploring the buttons, left, starting with the OUCH site and the many internal links you will find.

Hi Rick, hang in there.  I concur with Bob.   It would be hard to diagnose clusters with only 1 cycle or just a part of a cycle.  If I were you I would also keep a headache diary/logbook and write down everything you can about your headaches.  I would stay away from alcohol just in case it is CH.  Although if you drank alcohol and it did not trigger the pain than maybe it is not CH since most of us can't do it during our cycle.  Could be a painful experiment.

You could also try all of our remedies while you are figuring it out like redbull/caffeine-taurine at the first hint of a CH attack etc.

If you get diagnosed CH don't leave the doctors office without an O2 scription with a high flow regulator.  There is a good chance however that if you have CH your cycle will be over before you figure out what is going on, you'll forget about it for a year or 2 and get nailed again.  If you really think you have CH then get all set up in the off season to fight back next time.  Read everything here, get your oxygen set up or grow room or whatever, but if it is Clusters, they will be back and you'll have to wait another month to see your neuro and by then it is too much pain.

There is plenty more but it is covered well and extensively on this site and clusterbusters.com.

Good luck and keep us posted. 8-)(sunglass dude for you today)

--Shaggy

Hi there

I finished my first ever cycle late December it started very random , getting hit one day and then nothing for a week and then getting hit a gain . alcohol only triggered it 1 in 5 times but I think it can depend on what you are drinking.

Over the course of about 5 months I started getting hit more regularly - up to 8 times a day although nothing higher than a K8.

To start of with I wondered if it was CH cos it didn't seem to follow the regular patterns you see described here altho every thing else was text book.

So I'm sorry you need to be here but you've come to the right place. the next few weeks will let you know for shore and all the wonderful people here will be here to help and answer , or try to answer , all your questions so don't be afraid to ask.

I might not be much help being a rookie to this my self but there's years of experience here to draw from.

all the best and I hope It's just a random one off for you.

Nigel

Rick just wanted to echo that while you're working to get into a headache specialist, be sure to track your headaches. Here's one that others have used. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take this, along with the info on oxygen and such that you'll find in one of the buttons on the left.

Hey justed to say thanks for the advise and site recs. My fiance has been tracking the headaches and pain levels since monday and i get a one at about 10:00 everyday which falls in with the one last week i was getting at lunch time. I was also getting worse ones on my way home 5 or 6 level a couple days it hit on the same street that is only a small part of my ride at about 3:30. Mondays bad one came around 5:00 just into my second glass of wine. most any headache i have had has neverlasted longer than 45 min or been higher than a 5 but monday i wanted to die. going to find a specialist. today had a short 5 one at 10:00 took two ergotamine caffeine tablets and when it was gone i had less preasure than before. so far no ride home pain since tue. I thought about a glass of wine to know for sure but i'm scared since i was drinking on monday. thanks again

rick

Careful with wine...for many it's a trigger! Bob's advice is critical. There are a lot of docs who know a little bit about a lot of headache types! You do NOT want them diagnosing your problems.

Shaggy gave you some great advice too. It sounds weird, but an energy drink, chugged at the first sign of an attack, can abort or at least substantially reduce a hit for many, myself included. I prefer sugar free red bull, taste isn't too obnoxious!!

Joe

Feeling better for now, preasure has eased and was gone  all togather for a couple hours. As quick as i type preasure builds in my left eye, now reaching to my temple then kind of fades and builds. I'm looking at these ergotamine-caffeine tablets given to me by a physians assitant. Script says take two tablets at onset of headache and one every 30 minutes up to 6 in a 24 hour period/10 in 7 days. Took 3 yesterday two earlier at work two now but what about the rest of the week. Script also said 90 insurance company said 30 and what about the constant preasure except for two hours in 5 days, thats not sinus and my cat scan is good , tell me doc what do i do about that. It's not that I can't deal with it but I am starting to get very irratated. I just need a little peace. Thanks again i'm gonna look up a doctor.

rick

I used cafergot in the past, in tandem with oxygen. Oxygen would kill my attack, cafergot would buy me up to 12 hours pain free. I know people on the board who used cafergot suppositories as their primary abortive for many years and had a moderate degree of success. For most, oral cafergot does not work as an abortive because cluster attacks build very quickly, by the time oral cafergot gets into your system you're already getting stomped by the attack.

If it turns out you do have CH, your treatment will be a 2 pronged one. A preventative med, one you take daily to reduce frequency and intensity of attacks, then an abortive med, what you take when a headache starts. Please take the time to follow Bob's guide for finding a specialist, it's time well spent.

Joe