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Cluster-LIKE headache (Read 34536 times)
Bob Johnson
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Cluster-LIKE headache
Nov 3rd, 2010 at 4:00pm
 
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.

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======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]
=================================

(Message posted by a newbie who became a living example of a rare possibility!  BJ)

Bfingles
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  Re: Diagnosed with Cluster headaches a week ago
Reply #6 - Today at 12:22pm     So I thought I would update everyone.  First I appreciate all the folks who reached out to help and offer advise.  As it turns out I was miss diagnosed.  After reading all the posts on this website I realized I did not fit into the cluster headaches diagnosis.  I continued to push my Neurologist and he eventually sent me to the Stanford pain clinic (I highly recommend this clinic for anyone suffering any kind of headache pain including cluster headaches)  They quickly determined that I did not fit in to a classic symptoms and order a fiesta MRI, which revealed that I had cancer (missed on the 2 previous readings of my MRI), it is  a rare form of Squamacell carcinoma that went in instead of out and attached itself to my Trigeminal nerve causing all of the pain.  Just finishing radiation and chemo treatments now, future looks good and I'm glad I have answers.  The moral to the story is keeping pushing to make sure you have been diagnosed properly and get relief form your pain. 
======================


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.




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Re: Cluster-LIKE headache
Reply #1 - Nov 3rd, 2010 at 4:20pm
 
Always a good reminder!  Thanks for posting this, Bob.

My FIL has a friend who had the most excruciating headache of his life during a meeting.  Ambulance was called and he was taken to the hospital.  The Dr's initial Dx was clusters until the test results came back.  He has an inoperable aneurysm that could kill him at any time.  So far he is doing well and enjoying life to the fullest.

Cluster Headache is not the worst diagnosis you could get from the Dr.  If the Dr's find something, it usually isn't good news.
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Re: Cluster-LIKE headache
Reply #2 - Nov 3rd, 2010 at 4:29pm
 
This only reaffirms your thread on "Do no Harm" from last month Bob.  The first response to any newbie (or not so newbie) should be, and I believe for the most part has been, to get a firm diagnosis from a headache specialist.  It brings up a real concern when treatments fail that seem to work so well in others.  My fear is the small number of docs who are as well versed as you are on the subject, versus the vast majority who are not, could surely result in catastrophic consequences for some.
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Re: Cluster-LIKE headache
Reply #3 - Nov 3rd, 2010 at 4:47pm
 
Excellent Post Bob !   It's amazing the number of illnesses that can cause CH like headaches.  Definitely food for thought for newbies and oldies alike.  Cool

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Re: Cluster-LIKE headache
Reply #4 - Nov 3rd, 2010 at 5:15pm
 
Thanks for posting this Bob, it is a good reminder.  Secondary/Other conditions has often been under-discussed in my opinion.  Changes in patterns and/or new symptoms may need to be investigated.

I note the article "Cluster Headache Mimics".  We had the pleasure of having Dr. Dale Carter present this paper and other thoughts at the last ClusterBuster conference in Portland.
Wonderful presentation from an informed Doc.

Doug

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Re: Cluster-LIKE headache
Reply #5 - Nov 4th, 2010 at 1:24am
 
Perhaps this topic should be stickied and people who are new to the forum can be pointed to it, especially when they are reluctant to get a diagnosis from a headache specialist?
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Re: Cluster-LIKE headache
Reply #6 - Nov 4th, 2010 at 8:23am
 
I agree. This is such valuable information, and it would provide a good copy for those who want to inform their doc about what might be CH or might be something different. I haven't had good luck with docs looking up medical abstracts, but when I hand them some info they generally do look at it. Good work as always, Bob. lance
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Re: Cluster-LIKE headache
Reply #7 - Dec 13th, 2010 at 8:52am
 
Great Info, thanks.  I often wonder if I was misdiagnosed because I have medication (and O2, nerve blocks, etc)resistant chronic CH.  I have been on everything in different combo's, dosages, etc, and a herd of different docs, referrals, hospital admissions... All over more than 10 yrs now.  My most recent neurologist/headache specialist told me there is nothing else to try and he can't help me (like many others before him)  I'm so used to hearing that now.

I'm going to print that out and bring it to the next neurologist I find.  Thanks again!
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Re: Cluster-LIKE headache
Reply #8 - Jan 18th, 2011 at 12:57am
 
Thanks for the help everyone.  I did go to a neurologist 2 years ago when i first got these same headaches for 2 months.  He said i had migraines and also ran a full CAT scan looking for aneurisms and for brain tumors, etc.  The CAT scan came back perfect.  He gave me perscription meds for the migraines, which made the headaches worse.  I then read a number of books, etc that said DO NOT take the rebound causing meds the neurologist gives you or the over the counter rebound causing migraine meds with caffeine in them.  So, was kinda digusted that the neurologist gave me those, so have been reluctant to go back to a neurologist this time.  Guessing i dont need another CAT scan, as it was perfect before and the same exact headaches now two years later.  Should i go to a neurologist again though, or to a different type of MD???  Have been thinking i would go instead to an Osteopath, since it seems so related to the neck (and both the rolfer and the chiropractor say i am twisted and 'out of alignment'). 

Neurologist or Osteopath or both or something else???

Thanks!
Randy
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Re: Cluster-LIKE headache
Reply #9 - Jan 18th, 2011 at 6:20am
 
Randy Flowers wrote on Jan 18th, 2011 at 12:57am:
Thanks for the help everyone.  I did go to a neurologist 2 years ago when i first got these same headaches for 2 months.  He said i had migraines and also ran a full CAT scan looking for aneurisms and for brain tumors, etc.  The CAT scan came back perfect.  He gave me perscription meds for the migraines, which made the headaches worse.  I then read a number of books, etc that said DO NOT take the rebound causing meds the neurologist gives you or the over the counter rebound causing migraine meds with caffeine in them.  So, was kinda digusted that the neurologist gave me those, so have been reluctant to go back to a neurologist this time.  Guessing i dont need another CAT scan, as it was perfect before and the same exact headaches now two years later.  Should i go to a neurologist again though, or to a different type of MD???  Have been thinking i would go instead to an Osteopath, since it seems so related to the neck (and both the rolfer and the chiropractor say i am twisted and 'out of alignment'). 

Neurologist or Osteopath or both or something else???

Thanks!
Randy
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Re: Cluster-LIKE headache
Reply #10 - Sep 18th, 2012 at 10:18pm
 
What a great post Bob. CH is a "chronically" misdiagnosed condition-( under and over diagnosed ) and I have always banged on endlessly about asking the right questions in the right way before giving advice - a good example is the dangers of triptans for BAM (could kill you!) and over-medication of CH.

Luv ya Bob!
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Re: Cluster-LIKE headache
Reply #11 - Jun 1st, 2013 at 6:58pm
 
I can say for sure now after suffering cluster like headaches for 15 years that there are many health problems that cause clheadaches. I have suffered a neck and head injury at a young age and at 25 I began getting episodic cl hd. at 38  they became chronic. that change from episodic to chronic sent me into a downward spiral, but it led to a discovery that I have problems in my neck that I believe are causing them. my neros think im crazy but after getting on tizanidine and off cluster headache meds my clheadachs stopped I know I live a very different life than I used to but I am headache free. don't give up, don't give in . there may come a day when its over and your life starts again. maybe things will be better then ever.
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Re: Cluster-LIKE headache
Reply #12 - Mar 6th, 2014 at 5:09pm
 
Thanks for the post Bob. I am one of those newbies (not to pain) who thought my path was clear. Your information has given me a lot of food for thought as I thought I presented with classic CH symptoms and the drugs I was prescribed worked straight away, but your information backed up the warning that both Mike NZ and CH BRAIN gave me about mis diagnosis (can't thank them enough).
I am only being treated by my GP, who although well meaning is by no means an expert in the area of CH's. The clincher was his reluctance to pursue O2 on my behalf despite all the evidence. There are a few medical issues in my past that are definitely worth pursuing.
I'll take all the good advice given to me and find a good specialist, I may still end up with a diagnosis of CH but at least I will be sure. Thank you to everyone on this site who has helped me and let the journey continue !
Alan
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Re: Cluster-LIKE headache
Reply #13 - Mar 6th, 2014 at 7:40pm
 
Don't rule out having more than one headache type either, which could account for the CH set of symptoms plus the response to indomethcin. This is yet another reason to see a headache specialist.
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Re: Cluster-LIKE headache
Reply #14 - Mar 6th, 2014 at 9:56pm
 
Mike wrote,
Don't rule out having more than one headache type either, which could account for the CH set of symptoms plus the response to indomethcin. This is yet another reason to see a headache special.

Indomethcin stated for CH's but not the norm when treating CH's.

Indomethacin is a potent drug with many serious side effects and should not be considered an analgesic for minor aches and pains or fever. The medication is better described as an anti-inflammatory, rather than an analgesic. Indomethacin can also affect warfarin and subsequently raise INR.

Hoppy.


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Re: Cluster-LIKE headache
Reply #15 - Mar 7th, 2014 at 5:46am
 
I was directed by my GP on the initial consult to take Prenisone 75mg/day and Indomethican 75mg/day. After tapering down Pred over 2 weeks and cold turkey on the Indo after 1 week, was put on Verapamil 180mg/day. It worked a treat although I did suffer in the middle as the taper wasn't timed right with the verapamil. I also had a week of continuous shadows (very unpleasant). I wish I never took the Indomethican and started on the Verapamil as it seems to have muddied the waters for me. Was it the Prednisone or  the Indo that did the job ? i know that Pred is very effective as a first step but generally Indo is not effective for CH's. If it was the Indo then it's very possible I could be looking at something else. Probably the lesson learnt here is don't see a GP when you need specialist treatment. Will definitely remedy that situation as soon as possible.
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Re: Cluster-LIKE headache
Reply #16 - Mar 7th, 2014 at 3:30pm
 
Your GP was on the right track but in a mixed up way. The
normal method is Verapamil 360mg/day with a Prednisione
taper dose 7-10 days so the Verapamil can kick in. When
you see a neuro ask about getting oxygen and Imigran auto
injectors just to be on the safe side as an abortive.

Hoppy.
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Re: Cluster-LIKE headache
Reply #17 - Mar 7th, 2014 at 4:45pm
 
Sorry I forgot to mention he gave me Maxalt as an abortive. When I go back I will ask him why he chose that. Rizatriptan vs Sumatriptan any thoughts ?
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Re: Cluster-LIKE headache
Reply #18 - Mar 7th, 2014 at 5:39pm
 
What is Maxalt?





Maxalt (rizatriptan) is a headache medicine that narrows the blood vessels around the brain. Rizatriptan also reduces substances in the body that can trigger headache pain, nausea, sensitivity to light and sound, and other migraine symptoms.

Maxalt is used to treat migraine headaches. Maxalt will only treat a headache that has already begun. It will not prevent headaches or reduce the number of attacks.

Maxalt should not be used to treat a common tension headache, a headache that causes loss of movement on one side of your body, or any headache that seems to be different from your usual migraine headaches. Use this medication only if your condition has been confirmed by a doctor as migraine headaches.

Maxalt may also be used for purposes not listed in this medication guide.

Important information

You should not take Maxalt if you are allergic to rizatriptan, if you have any history of heart disease, or if you have coronary heart disease, angina, blood circulation problems, lack of blood supply to the heart, uncontrolled high blood pressure, ischemic bowel disease, a history of a heart attack or stroke, or if your headache seems to be different from your usual migraine headaches.

Do not take Maxalt within 24 hours before or after using another migraine headache medicine, including almotriptan (Axert), eletriptan (Relpax), frovatriptan (Frova), naratriptan (Amerge), sumatriptan (Imitrex, Treximet), zolmitriptan (Zomig), or ergot medicine such as ergotamine (Ergomar, Cafergot, Migergot), dihydroergotamine (D.H.E. 45, Migranal), or methylergonovine (Methergine). Do not use Maxalt if you have taken a monoamine oxidase inhibitor (MAOI) such as furazolidone (Furoxone), isocarboxazid (Marplan), phenelzine (Nardil), rasagiline (Azilect), selegiline (Eldepryl, Emsam, Zelapar), or tranylcypromine (Parnate) in the past 14 days.

 




Before taking Maxalt, tell your doctor if you have liver or kidney disease, high blood pressure, a heart rhythm disorder, or coronary heart disease (or risk factors such as diabetes, menopause, smoking, being overweight, having high cholesterol, having a family history of coronary artery disease, being older than 40 and a man, or being a woman who has had a hysterectomy).

Also tell your doctor if you are also taking an antidepressant such as citalopram (Celexa), duloxetine (Cymbalta), escitalopram (Lexapro), fluoxetine (Prozac, Sarafem, Symbyax), fluvoxamine (Luvox), paroxetine (Paxil, Pexeva), sertraline (Zoloft), trazodone (Desyrel, Oleptro), venlafaxine (Effexor), or vilazodone (Viibryd).

Maxalt will only treat a headache that has already begun. It will not prevent headaches or reduce the number of attacks.

After taking a Maxalt tablet, you must wait two (2) hours before taking a second tablet. Do not take more than 30 mg of rizatriptan in 24 hours.
 
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Re: Cluster-LIKE headache
Reply #19 - Mar 7th, 2014 at 6:35pm
 
Imitrex is known as Imigran in Australia, New Zealand, and the UK. Maxalt is used for migraine headaches where as
Imigran is for both migraine and CH's.

Hoppy.
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Re: Cluster-LIKE headache
Reply #20 - Mar 7th, 2014 at 9:23pm
 
I'm clear on all the warnings listed but you are saying that Maxalt is ineffective for aborting clusters ? and why would he have suggested it having diagnosed me with Clusters not migraines (inexperience ?). He mentioned sumatriptan during the consult but then went with Maxalt. Just a bit confused
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Re: Cluster-LIKE headache
Reply #21 - Mar 7th, 2014 at 10:14pm
 
You will need to ask your doctor this. All i know is Maxalt
are primarily used for Migraines.

Hoppy.
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Re: Cluster-LIKE headache
Reply #22 - Mar 7th, 2014 at 10:28pm
 
Thanks for all the info. I will pursue it with him as from most of my reading here, there seems to be no set rules for treatment. What works for one may not work for another and vice versa.
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Re: Cluster-LIKE headache
Reply #23 - Mar 7th, 2014 at 11:42pm
 
shortstraw wrote on Mar 7th, 2014 at 9:23pm:
I'm clear on all the warnings listed but you are saying that Maxalt is ineffective for aborting clusters ? and why would he have suggested it having diagnosed me with Clusters not migraines (inexperience ?). He mentioned sumatriptan during the consult but then went with Maxalt. Just a bit confused


Maxalt can kill a CH as I've used them previously to kill mine before I got oxygen.

However since it is taken orally it takes about 20 minutes or so to take effect, which is a long, long time when you're in the middle of a CH. In contrast, injectable imitrex (imigran / sumatriptan) takes 5 minutes or less, just like oxygen can do when used at a high flow rate with a non-rebreather mask.

If your doctor is most experienced with dealing with migraine, which is more than likely, he will be used to using it as a way to kill off migraines which it does pretty well. I've used it to kill lots of mine as it is easy to take and you don't need a drink with it. It still takes about 20 minutes to take effect which isn't too bad with a migraine, there is just a small issue in that you can't use it when using propranolol as a preventive which is what I use.

So it is an option if nothing else is available, but I'd go with oxygen / injectable imitrex as a first choice.
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Re: Cluster-LIKE headache
Reply #24 - Mar 7th, 2014 at 11:46pm
 
Yes thats what we have come to learn when you suffer
with CH's. With a lot of folk it's just a matter of what
works best for you. Like you said we are all different.

Hoppy.
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