Hello all,

I don't know where to begin, other than to tell you where I have been.

I'm a 38 year old male.  I remember as a 17 year old, I spent my first overnight in an emergency room while on a choir trip.  They gave me a shot in the rear (I can't remember what...probably demerol or morphine), but all that did was make me high, and in pain.

I have spent the past 21 years going through my own personal battles.  I have had more tests, xrays, and scans done that I care to remember, and have eaten more tylenol and advil than I care to admit.  I went to a neurologist 15 years ago, and he made me feel so bad and embarrassed that I tried to just live with the pain.  I remember him asking me what triggers my headaches, or what symptoms I had.  I told him that nothing seemed to cause them, and they just happened out of nowhere.  Maybe it was the way I explained it, but he led me to feel like I was "imagining things".

Yesterday, I was at my new physician, and talking about my headaches.  He told me that I have Cluster Headaches, which I had suspected for the past 3 years.  He hasn't prescribed me anything as of yet.  He wanted me to try a massage therapist that specializes in massages for people with Cluster headaches.  He also spoke to me about pot.  I had to laugh at that one as I do not use any type of "alternative drugs", but I guess we'll see.

I have to say, I'm glad I found you guys.....I thought I was going crazy and there was something wrong with me.  I was glad to read some of the other CH stories about what they go through, as I have been known to walk in circles trying to escape the pain, or trying to explain to my wife and kids why my eyes were watering, and red, and what I was doing up at 12am.....then 4 am.....then 8 am....... 

I have also tried (without much success) in explaining to my wife what they feel like.  For me, it starts in the back of my neck, where my neck meets my skull.......within minutes it is full blown with a hot dagger coming through the top of my head, one coming in through my right eye, through the back of my neck where it originated.  I also get severe pain in my right top molar. 

Good to know about this site.......I'm glad it exists!!

Glad you found this site too,

This site has a lot of information onit about how to live with these terrible headaches.  O2 has been the most helpful,  you need to get that as soon as possible.  Just knowing that others are dealing with the same thing,  and that you can ask questions will help with dealing with these (it does me for sure).  Just ask questions.  Folks on here will chime in and help.

Hi Bergalippa,   [smiley=wave.gif] Welcome to your cluster family.

"I don't know where to begin, other than to tell you where I have been"

You've come to the right place. We've all been there too.
The folks on this site are more knowledgeable about CH than any doctor you are likely to find. Read every thing you can here and you will benefit from that knowledge, as I have. I cannot post a link (computer dunce) but go to the "medications, treatments and therapies" board and look for a thread called "123 days pain free... and I think I know why". This remedy has gone global and seems to be effective for 80% of people who have tried it. It's cheap, over the counter stuff, and good for you even without the CH. I have been on it myself for just over a month now, and so far, so good. Also look at the "oxygen info" - yellow bar on the left of your screen. You'll find loads more too. Things that work for some but not others , but anything is worth a shot right? Chugging a red bull at the onset of pain helps many. Sumatriptan (imigran) auto injections are brilliant too. Works for me every time.

Do keep coming back to ask your questions. There are some clever people on here who know all the science, and share your pain. If nothing else, it's good to talk to someone who really understands.

Take care
Maz

Bergalippa wrote on Sep 5^th, 2013 at 11:22am:

... my new physician...told me that I have Cluster Headaches,..He hasn't prescribed me anything as of yet.  He wanted me to try a massage therapist that specializes in massages for people with Cluster headaches.  He also spoke to me about pot...

G'day Bergalippa, and welcome. As you cruise around ch.com you may, just may, come to wonder if your new physician couldn't do with a little extra training in the treatment of cluster headache.

I'm also assuming he's done all the relevant tests to ensure that the problem really is CH and not some other similar things that really can be quite serious.

We'll happily discuss the many options which your doctor may consider appropriate but in the meantime it might pay to read all you can here, and ask questions, so you can honestly take charge of your own fight against this beast.

We're here to help,

Brian down under.

What Brian said...

O2 works for the pain (if done right and at a high flow rate - at least 15-25 liters with a NON rebreather mask).

Check out the D3 (OTC) regimen .. it's working well for a lot on here.

Melatonin at night (OTC) helps some of us to get thru the night hits.

But READ READ READ!

And over the years POT has NOT proven to help anyone that I know of. (Shrooms yes, pot no). Massage therapy, while nice and acupuncture - never helped me and actually made the CH worse - always got hit right afterwards.

We all have different triggers. The only thing I can figure for mine is the barometer - when it changes I get hit. I eat and drink what I want. But I do take preventatives (zonagran - an anti-seizure med). 

The more you know about this CH - the more you can "educate" your doctor (and most doctors don't know that much about CH). But you MUST be your own advocate with this if you're to get relief from the pain.

Oh and I keep a bag of frozen peas in the freezer for an ice pack and a rice bag for a heat bag to stick in the microwave. Sometimes one works and sometimes the other.

You have to find what works for you..

Keep us up to date and like I said READ READ READ..  :-*

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
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Since you will be living with Clusters for many years and your doc is a bit casual, would urge you to find a headache specialist, if at all possible. This is really a more complex area of medicine than the "take an aspirin" ads would have us believe.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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You'll receive many suggestions for treating Cluster but it would be wise to get the Dx confirmed before starting any self-treatment. There are a number of serious Cluster-LIKE disorders whilch can mislead.

As you work with any doc, use the PDF file, below as a check list. Lists the most commonly used meds for Cluster.

The more you learn the more comfortable and secure you'll feel.
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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
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.

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Great advice so far from people who really know what they're talking about. You will do well to take it to heart. I just wanted to add that your description of how the pain begins and progresses is consistent with the path of the trigeminal nerve. It runs from the eye to the ear to the jaw. Or t'other way round. Anyway, you aren't imagining things and it might be helpful to share what you discover on the site with your wife. It could help her to understand this awful malady. God bless. lance