Hello Everyone,

I'm 29 y/o Male, My father has been diagnosed with Cluster Headaches. I wanted to get some input from other cluster headache sufferers in order to determine what type of headache I am experiencing.

I'm pretty familiar with the Symptoms of CH's and when comparing my headaches with Dad's they are alike with some differences.

I usually know when I'm going to get a headache, one side of my nose gets congested and I feel pain starting in around the back of my left eye. It starts as a light pain and just increases exponentially. It usually gets to the point where I can't take the pain at about 3 hours with no medication. I have never noticed facial drooping. My pain is constant and sharp and always on the left side behind my eye. I can feel it radiate towards the back of my head and into my neck on the left side. My headaches are frequent 2-4 a week on good weeks and 5-7 on bad ones. When I get a headache I can pretty much guarantee I will have another one around the same time the next day. OTC medicine is useless, only Imitrex 100mg pill or Stat Dose Injection helps and have had times where I needed to follow-up the injection with another 2 hours later. If I do any heavy lifting while I have a headache it makes it worse.

Does this sound like a cluster headache?
I am seeing a Doctor and have seen a neurologist up until my health insurance was cut off. My neurologist gave me a shot in the back of my head, I don't remember the name but it was a steroid and numbing agent that was extremely scary and did not work.

There is a link to your left on this page cluster quiz. This could
Answer your ?.

Hoppy

Hoppy wrote on Mar 12^th, 2014 at 2:44am:

There is a link to your left on this page cluster quiz. This could Answer your ?. Hoppy

Some of it sounds like CH. I agree with Hoppy. Take the quiz and see a headache specialist. Too many conditions mimic CHs to take chances. blessings. lance

I concur, only a doctor should ever diagnose a disease. I see waaaay to many people online self diagnosing. By the sounds of it you have 100% of the symptoms and experience what we do and I am pretty confident based on what you have said but without a dr diagnosis, self treating can cause issues. Nor can you get scripts for meds without a diagnosis.
Unfortunately you will have to go through the gears of try this try that through doctors. What work for some do not work for everyone.
What the dr gave you I believe is an occipital nerve block. I had that. Did not work for me.Had an attack within the 30 min...

See a neurologist. And reprt back...bring in the survery on left side of screen printed off...may back up your claim.

Best wishes

Headches are not simple disorders to diagnose properly; neurologists often lack training/skill in this area; why we recommend seeing a headache specialist.

Possible to have a headache disorder which has elements of both migraine and Cluster making a good diagnosis important.
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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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

as everyone has said, what you have described sounds like CH, but could also be a bad migraine.

It took a few years before i was diagnosed, luckily at the time my condition was textbook CH syndrome and even then, I spotted it online and was only when i mentioned it to my doctor that I got reffered to a neurologist who confirmed it was CH.

I have since had some (very few) episodes that have not a lot of similarities to the common symptoms of CH. unfortunately it is a trial and error game until you get a proper diagnosis.

Curr Pain Headache Rep. 2007 Apr;11(2):154-7. 


Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.
PMID: 17367596
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Curr Pain Headache Rep. 2001 Feb;5(1):67-70.
Migrainous features in cluster headache.
Peatfield R.
Author information Charing Cross Hospital, Fulham Palace Road, London W6 8RF, UK. rpeatfield@ic.ac.uk
Abstract
Migraine and cluster headache have been considered entirely separate clinical syndromes, both in routine clinical practice and in the 1988 International Headache Society classification. Neurologists seeing large numbers of patients soon realize, however, that there is a considerable overlap between the two conditions. Some patients have attacks with the cardinal features of cluster headache, but also have a few symptoms (especially a visual aura) usually attributed to migraine. In addition, it is not uncommon for a patient with a lifetime's history of migraine to experience a typical bout of cluster headache, although the reverse is less common. This article reviews the published series of such patients.

PMID:11252140[PubMed]