Welcome to the board. You'll find the ER and urgent care are piss poor places to seek treatment for any kind of head pain, more so for something as complex as CH. We need to get you to a competent neuro to confirm your diagnosis and get a decent treatment program started. Imitrex Injectables are great for emergency use but you'll go bankrupt quickly if that's your only abortive. Follow this link to a list of doctors other CH'ers have used in your area:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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 over 35years, they haven’t killed me yet! 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. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This link will show you how to get set up with welding oxygen:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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.

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.

clusterbusters.com


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

Reposting one of Bob Johnsons.....lengthy read.......   But it gives you an idea of why we stress getting to a headache specialist neurologist, as this is by no means a complete listing....just a sample of headache types that can be mistaken for CH!


The concept presented there is: A headache may appear to be a Cluster but can, in reality, be a medical condition which is far more serious, even life threatening. This suggests that we need a good diagnostic work-up before we assume Cluster and before we start treating the headache as Cluster.

Here are a few abstracts which are case examples of how Cluster-LIKE headaches (the term used in the literature) can be seriously misleading.
================

Cephalalgia. 2010 Jun 8.

Positional CLUSTER-LIKE headache. A case report of a neurovascular compression between the third cervical root and the vertebral artery.
Créac'h C, Duthel R, Barral F, Nuti C, Navez M, Demarquay G, Laurent B, Peyron R.

Université Lyon 1, France.

Abstract
Symptomatic CLUSTER-LIKE HEADACHES have been described with lesions of the trigeminal and parasympathetic systems. Here, we report the case of a 44-year-old woman with continuous auricular pain and a positional cluster-like headache associated with red ear syndrome. Clinical data and morphological investigations raised the hypothesis of a neurovascular compression between the C3 root and vertebral artery. Neurosurgical exploration found a fibrosis surrounding both the C3 root and the vertebral artery. The excellent outcome after microvascular cervical decompression suggests a causal relationship between the cluster-like headache and the vertebral constraint on the C3 root.

PMID: 20974591 [PubMed - as supplied by publisher]
====================================================

Emerg Med J. 2010 Oct 20.

Acute coronary syndromes can be a headache.
Costopoulos C.

Abstract
Ischaemic heart disease is a common cause of morbidity and mortality worldwide. Patients typically present with chest pain and breathlessness either on exertion or at rest. Cardiac ischaemia can also lead to headache, although this is very rarely its only manifestation. Headache is MOSTLY ASSOCIATED WITH MIGRAINE, CLUSTER AND TENSION headache disorders. MORE SINISTER CAUSES INCLUDE SUBARACHNOID HAEMORRHAGE, TEMPORAL ARTERITIS, MENINGITIS, VENOUS SINUS THROMBOSIS AS WELL AS VERTEBRAL AND CAROTID ARTERY DISSECTION. A case of headache is presented where the underlying cause was cardiac ischaemia, itself the result of triple vessel coronary artery disease. This, also referred to as cardiac cephalgia, should be suspected in the older patient with risk factors for atherosclerotic disease presenting with recent-onset headache. Diagnosis of this requires high clinical suspicion and is essential for correct patient management.

PMID: 20961932 [PubMed]
===============================================================================
--------------------------------------------------------------------------------


Title: "Cluster Headache Mimics"--useful article. Post by Bob_Johnson on Jul 30th, 2004, 2:04pm
--------------------------------------------------------------------------------


This is an important article to obtain and take to your doctor if you are having a difficult time getting a diagnosis of the type of headache problem you have and/or finding medications which give consistent relief for cluster. It is a technically difficult read for someone not educated in medicine. Its value is in providing case studies about uncommon conditions which appear to be cluster headache but which are, in fact, not.

Broad signs which may signal that the problem being treated is a cluster mimic are: having made a diagnosis of cluster, the standard medications do not work OR they work for an episode or two and then stop being effective. Second, if the diagnostic signs differ in important ways from the standard signs for cluster (and this is a subtle issue which requires a physician with sophistication).

One of the striking findings reported: Cluster can arise from head trauma as long as 30-years after the trauma!

Some conditions which can mimic primary cluster headache:

Infections
     Aspergillus
     Inflammatory disorders
     Wegener's granulomatosis
     Orbital myositis
     Plasmacytoma
     Multiple sclerosis
Head trauma
Vascular abnormalities
     Arterial dissections
     Arteriovenous malformations
Neoplasms
     Pituitary tumors
     Metastases
Other trigeminal autonomic cephalgias: SUNCT syndrome; Paroxysmal hemacrania; Hypnic headache

"Cluster Headache Mimics", Dale M. Carter, M.D.. CURRENT PAIN AND HEADACHE REPORTS, 2004, 8:133-139.
(Take this citation to your public library and they can order a copy of the complete article for you.)
---------------------------------------------------------------

Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.
========

More cases which make it clear that we need caution in diagnosis and more skill than many of our docs possess.
--

Cephalalgia. 2010 May 17.

Mere surgery will not cure cluster headache - implications for neurostimulation.
Hidding U, May A.

University Medical Centre Hamburg Eppendorf, Germany.

Abstract
This case study concerns a patient with primary chronic cluster headache, who was unresponsive to all treatments and consecutively underwent hypothalamic deep brain stimulation (DBS). DBS had no effect on the cluster attacks, but cured an existing polydipsia as well as restlessness. However, hypothalamic DBS produced a constant, dull headache without concomitant symptoms and a high-frequent tremor. All of these effects were repeated when the stimulation was stopped and than started again. DBS had no effect on a pathological weight gain from 70 kg to 150 kg due to bulimia at night, usually during headache attacks.

THIS CASE ILLUSTRATES THAT CLUSTER HEADACHE IS, IN SOME PATIENTS, ONLY ONE SYMPTOM OF A COMPLEX HYPOTHALAMIC SYNDROME.

This case also underlines that the stimulation parameters and anatomical target area for hypothalamic DBS may be too unspecific to do justice to the clinical variety of patients and concomitant symptoms. Hypothalamic DBS is an exquisite and potentially life-saving treatment method in otherwise intractable patients, but needs to be better characterised and should only be considered when other stimulation methods, such as stimulation of the greater occipital nerve, are unsuccessful.

PMID: 20974592 [PubMed
---------

J Neurol. 2010 Oct 26. [Epub ahead of print]

Trigeminal autonomic cephalalgia sine headache.
Haane DY, Koehler PJ, Te Lintelo MP, Peatfield R.

Department of Neurology, Atrium Medical Centre, PO Box 4446, 6401 CX, Heerlen, The Netherlands, ass641@atriummc.nl.

Abstract
Cluster headache without headache (CH-H) has been described several times. We add three new CH-H patients and a patient with (probable) paroxysmal hemicrania without headache (PH-H). We searched the literature and found some more cases of CH-H and PH-H. CH-H attacks may have a shorter minimal attack duration than CH attacks. We propose the term trigeminal autonomic cephalalgia without headache (TAC-H) for autonomic attacks and/or extracephalic pain or sensory symptoms with an attack duration and distribution and/or response to therapy suggesting one of the trigeminal autonomic cephalalgias, but without accompanying headache. Secondary TAC-H may develop after treatment for painful TAC attacks. We discuss pathophysiological issues, particularly the central role of the hypothalamus and the suggestion that the superior salivatory nucleus (SSN) might be triggered by the diencephalic pacemaker without nociceptive activation.

PMID: 20976466 [PubMed

=========

Acta Neurol Scand. 2010 Apr 8.

Secondary chronic cluster headache due to trigeminal nerve root compression.
Mjåset C, Bjørn Russell M.

Head and Neck Research Group, Research Centre, Akershus University Hospital, Lørenskog, Norway.

Abstract
Mjåset C, Bjørn Russell M. Secondary chronic cluster headache due to trigeminal nerve root compression. Acta Neurol Scand: DOI: 10.1111/j.1600-0404.2010.01322.x. (c) 2010 The Authors Journal compilation (c) 2010 Blackwell Munksgaard. A 50-year-old woman had a gradual onset of chronic headache located in the right temporal region and a burning sensation in the root of the tongue which over a year evolved into chronic cluster headache with a milder chronic headache in-between the severe cluster headache attacks. A cerebral magnetic resonance imaging (MRI) showed vascular compression of the trigeminal nerve root on the pain side. Neurosurgery microvascular decompression relieved the patient?s chronic cluster headache, the chronic intermittent headache and the burning tongue sensation. The effect was persistent at a 1 year follow-up. PATIENTS WITH ATYPICAL SYMPTOMS OF CLUSTER HEADACHE SHOULD BE EXAMINED WITH CEREBRAL MRI ANGIOGRAPHY OF ARTERIES AND VEINS TO EXCLUDE SYMPTOMATIC CAUSES.

PMID: 20384588 [PubMed]

=======
Emerg Med J. 2011 Jan;28(1):71-3. Epub 2010 Oct 20.
ACUTE CORONARY SYNDROMES CAN BE A HEADACHE.
Costopoulos C.
SourceDepartment of Medicine, Addenbrooke's Hospital, Cambridge, UK. ccostopoulos@doctors.org.uk

Abstract
Ischaemic heart disease is a common cause of morbidity and mortality worldwide. Patients typically present with chest pain and breathlessness either on exertion or at rest. Cardiac ischaemia can also lead to headache, although this is very rarely its only manifestation. Headache is mostly associated with migraine, cluster and tension headache disorders. More sinister causes include subarachnoid haemorrhage, temporal arteritis, meningitis, venous sinus thrombosis as well as vertebral and carotid artery dissection. A case of headache is presented where the underlying cause was cardiac ischaemia, itself the result of triple vessel coronary artery disease. This, also referred to as cardiac cephalgia, should be suspected in the older patient with risk factors for atherosclerotic disease presenting with recent-onset headache. Diagnosis of this requires high clinical suspicion and is essential for correct patient management.

PMID:20961932[PubMed ====[Added 11/9/11]
BMJ Case Rep. 2008;2008:bcr0720080444. Epub 2008 Nov 20.
Cluster headache or giant cell arteritis?
Baskar S, Etti R, Kitas G, Klocke R.
SourceDudley Group of Hospitals, Rheumatology, Russel's Hall Hospital, Dudley, DY1 2HQ, UK.

Abstract
We describe an elderly female patient with known polymyositis who presented with new onset temporal headache that was diagnosed as giant cell arteritis but subsequently had a typical clinical course of cluster headache. This case illustrates the potential for diagnostic confusion between giant cell arteritis (GCA) and cluster headache (CH) and the need to consider CH as a potential differential diagnosis in those newly presenting with headaches, even in the elderly, and relapsing headaches in subjects with a diagnosis of GCA. Importantly, this needs to include female patients, a group historically thought to be much less likely to develop CH.

PMID:21716821[PubMed]
====
This link will take you to a German source (with mix of German and English titles). These mimics of Cluster are rare, even exotic, but for the intellectually curious it suggests just how many conditions can present as Cluster headaches.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

======Following posted 3/19/12===

Neurol Sci. 2009 May;30

Headache and multiple sclerosis: clinical and therapeutic correlations.
La Mantia L.
SourceIstituto Nazionale Neurologico C. Besta, Via Celoria, 11, 20133, Milan, Italy. lamantia@istituto-besta.it

Abstract
Headache is not generally considered as a symptom of multiple sclerosis (MS), but several studies have showed that it is more frequent (about 50%) in MS patients than in controls or general population. Headache may occur at onset and during the course of the disease. Tension-type headache and migraine without aura are the most commonly reported primary headaches; occipital neuralgia or cluster-like attacks have also been described, the location of demyelinating lesions (cervical or brain stem) could be strategic in these cases. Furthermore, disease-modifying therapies, such as interferons, may cause or exacerbate headache. These data suggest that MS patients have an increased risk of headache. Preventive therapies may be evaluated in selected patients during chronic treatments to ameliorate compliance.

PMID:19415421[PubMed]
-----------------------------
One value of this report: clue that a headache is not Cluster--when standard CH meds are not effective, in full or in part.
_______________________
J Pain Symptom Manage. 2009 Feb;37(2):271-6.

Chronic cluster-like headache secondary to prolactinoma: uncommon cephalalgia in association with brain tumors.
Benitez-Rosario MA, McDarby G, Doyle R, Fabby C.
SourceUnidad de Cuidados Paliativos, Hospital La Candelaria, Tenerife, Spain. mabenros@gmail.com

Abstract
Headache is a common and disabling aspect of pituitary disease. Chronic and episodic migraine are the most common clinical syndromes of headaches related to pituitary tumors, although other types of headache, such as trigeminal autonomic cephalalgias (TACs), can also be present. TACs include short-lasting, unilateral neuralgiform headache attacks with conjunctival injection and tearing; paroxysmal hemicrania; and cluster headache.

WE REPORT ON A PATIENT WITH A CHRONIC CLUSTER-LIKE HEADACHE ASSOCIATED WITH A MACROPROLACTINOMA. ALTHOUGH CABERGOLINE, PREGABALIN, AND CORTICOSTEROIDS WERE NOT EFFECTIVE AS PREVENTIVE TREATMENTS, HIGH-DOSE VERAPAMIL SHOWED GOOD EFFICACY. MORPHINE AND OCTREOTIDE WERE EFFICACIOUS AS ABORTIVE TREATMENTS FOR ATTACKS, BUT PAIN WAS ONLY PARTIALLY RESPONSIVE TO OXYGEN AND REFRACTORY TO SUBCUTANEOUS SUMATRIPTAN.

PMID:18694630[PubMed]

=====================

Cephalalgia. 2010 Dec;30(12):1509-13.

Positional cluster-like headache. A case report of a neurovascular compression between the third cervical root and the vertebral artery.
Créac'h C, Duthel R, Barral F, Nuti C, Navez M, Demarquay G, Laurent B, Peyron R.
SourceUniversité Lyon 1, France. christelle.creach@univ-st-etienne.fr

Abstract
Symptomatic cluster-like headaches have been described with lesions of the trigeminal and parasympathetic systems. Here, we report the case of a 44-year-old woman with continuous auricular pain and a positional cluster-like headache associated with red ear syndrome. Clinical data and morphological investigations raised the hypothesis of a neurovascular compression between the C3 root and vertebral artery. Neurosurgical exploration found a fibrosis surrounding both the C3 root and the vertebral artery. The excellent outcome after microvascular cervical decompression SUGGESTS A CAUSAL RELATIONSHIP BETWEEN THE CLUSTER-LIKE HEADACHE AND THE VERTEBRAL CONSTRAINT ON THE C3 ROOT.

PMID:20974591[PubMed]
===========================
Neurologist. 2012 Jul;18(4):206-7.
Cluster headache and parietal glioblastoma multiforme. [BJ: group of abnormal growths with varying characteristics.]
Edvardsson B, Persson S.
SourceDepartment of Neurology, Faculty of Medicine, Lund University Hospital, Lund, Sweden.

Abstract
INTRODUCTION: : Cluster headache (CH) is a primary headache by definition not caused by any known underlying structural pathology. However, symptomatic cases have been described. The evaluation of CH is an issue unresolved.

CASE REPORT: : A 41-year-old man presented with a 3-month history of side-locked attacks of excruciating severe stabbing and boring right-sided pain located in the temple and the orbit. The attacks were associated with conjunctival injection and restlessness and migrainous features. The duration of attacks was about 30 minutes and the frequency 4 to 5 per 24 hours. His vital signs and physical and neurological examination were normal. A previous unenhanced brain computed tomography had been normal. A diagnosis of CH was made. The patient responded partially to treatment. Enhanced magnetic resonance imaging after 3 weeks displayed a right-sided parietal glioma with a surrounding edema and mass effect. After debulking, the headache attacks resolved completely.

CONCLUSIONS: : Contrast-enhanced magnetic resonance imaging should always be considered in patients with CH despite earlier normal head computed tomography/examinations. Late-onset CH represents a condition that requires careful evaluation. Parietal glioblastoma multiforme can present as CH.

PMID:22735247[PubMed]
=================================
This is not a comprehensive list of disorders which mimic Cluster. I stopped adding to this list because it would just not stop growing!    And my intention has been to just provide an indication of how complex making an accurate diagnosis of Cluster can be--a list long enough to tease the reader and their docs into awareness.



Joe

I have had CT done, and have Neuro Eval tomorrow morning with MRI/MRA scheduled for next week. 
Thank you for all those wonderful links and in depth suggestions.
My better half has already beenn to Costco and purchased vitamins and a swimming pools worth of Monster. 
Starting to get some extra use from my Espresso machine making iced pre-mades for the middle of night also.
So much info...so much good info.   again....THANK YOU

Before you start self-medicating, it's important to get established with a doc who knows the complexity of headache treatment. What your first doc gave you (pills) says he no up to date. A general neurologist is not best choice because most of them have meager training in headache--unless he can assure you that he has training and experience.

Best approach is a headache specialist and I assume you are in an area where it should not be hard to locate one.
------
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
============
The standard treatment for Cluster is:

1. prednisone in high dose for a few days; dose tapered down quickly. It will immediately stop attacks.
2. At the same time, start using a long term med which reduces/blocks attacks. You will stay on this one for some time.
3. Get a quick acting abortive, such as Imitrex INJECTION (not pill) used if an attacks sneaks thru.

Since there a number of others meds used for Cluster, this is why a specialist is your best route to get skill and experience it what is a pretty complex area of medicine.

For our infro: print out the PDF file below. Start of your education in treating Cluster.
=====
If you start self-medicating before getting with a good doc it wll make his work more complex, even misleading as he starts you treat you. So, please, start the doc search ASAP.

The tip does work, but I need 3mg, or 2.5ml so I get two injections out of one. Jack, you asked about the drug companies helping with the cost of Rx. Some have in the past. The best thing would be for you to write to them directly, explain your situation, and ask if they have any relief programs suitable to your needs. Let us know how you make out. blessings. lance

Hoppy wrote on Dec 4^th, 2013 at 5:43pm:


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

That has the standard definitions for the different headache types and it's worth a quick look at just how complex and area this is, which is why we always suggest people see a headache specialist and not rely on a GP or a standard neurologist.

Hi Skott,
the answer to your ? is no, Melatonin is perfectly safe.

Hoppy.