Hello everyone,
I'm new here. I'm 24 and I live in CA. I had my first "migraine" when I was 18 and I've been getting them ever since. It's been such a struggle I've missed a lot of opportunities because of them. I always felt like a was different from other migraine sufferers. During an attack, I never get nauseous or throw up like others say they do. I just thought maybe I was lucky. But I researched it more and found out that I in fact do not suffer from migraines, but cluster headaches. I fit all the symptoms and I completely understand why they are also known as "suicide headaches" I remember literally praying to God to make the pain stop because it was so unbearable. I had a bottle of Vicodin in my hand and wanted so badly to just swallow the whole bottle...I didn't really want to die I just wanted the pain to STOP. They have been very bad lately and I'm losing hope...no over the counter or prescription medicine helps. I'm so glad I found this website dedicated to sufferers of cluster headaches. I hope to help you all as much as I can and get support for myself as well.

I guess we just have to remember that we are not alone in this.

-Kelsey

You need to see a headache specialist and get a real diagnosis.

              Potter

Welcome Kelsey!  I'm very sorry that you have been suffering with the head pain and hope that you please stick around this website to learn.

I also recommend getting in to see a doctor, preferably a neurologist, to get a proper diagnosis.

Maybe state where it is you live and another member can recommend a doc for you?

:)Melissa

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
================
Serious first step:

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.
======
Before you start taking this and that med/product for the headache, confirm the diagnosis. There are so many types of headache, and many serious medical problems which mimic Cluster, that a good work-up is essential.

Don't use a general neurologist. They receive remarkably little training in headache.
===
Start learning about Cluster even as you seek a doc.

=====
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]
====

A couple of 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
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"

Welcome to the board Kelsey. As mentioned above, we need to get you working with a headache specialist neuro. We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! I am just outside of San Diego, Lakeside, send me a PM if you need a doc recommendation in this area.

You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Avoid the temptation to rely on over the counter stuff, Ibuprofen, Tylenol, Aspirin, they don't help CH and can cause rebound attacks and mess with your internal organs in a bad way.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Kelsey,

You've already got great advise, as Joe said, knowledge is power, if indeed you are diagnosed as a CH.... Read , learn and best of luck. Get thee to a Neuro...
I've suffered from CH for the better part of 20 years, and I agree with Joe, ain't killed any of us.... You'll find a lot of support and information on this site. Been a god send for many of us.

Hi Kelsey,
Just saw your posting.  You've found the best place to help yourself and have already been provided excellent advice from some of the most knowledgeable people in the world, so I ditto what they wrote to you.

How are you feeling? 

What have you done to help yourself since you last posted?

We are here for your support. ;)

Hi Knitty  :)


Insaknitty wrote on Aug 25^th, 2011 at 11:06pm:

I guess we just have to remember that we are not alone in this.

Yep and then without skipping a beat we go get ourselves a lot of real relief from this thing through a couple or three of the approaches Joe outlined above.

(And while you're hunting for an official diagnosis, I'm of the mind that just going to a neuro is RISKY - your garden variety neuro often doesn't know jack about CH. A headache specialist is about the only type you can really trust).

I've seen a lot of people (including meself)  :) find a lot of relief when they land here at the mother lode of helpful CH info. Glad ya found us.