Hi there, I'm Tish, Canadian living in the Interior of British Columbia, I'm a 34yr old mother of a 3yr old boy, a step-mother to a 9yr old girl, married and finally have an appointment with a neurologist next week.

I've taken countless quizzes, including the one on this awesome site, and everything seems to point to Cluster headaches rather than migraine. There's just a few key things that seem to make me wonder...

The evil gremlin that lives on the one side of my head, who wakes me up in the middle of the night (most often), can last for hours upon hours. The pain often doesn't go away as suddenly as I have heard they are supposed to with "clusters". Normally, only narcotic pain killers (a lot of them) will reduce the pain enough for me to be able to calm the bleep down. I'm pacing, rocking, smashing my head, all of it. I want to lunge at any nurse or doctor that tells me to "just lie down and breathe."    I rarely go to the ER (I live in a rural area so it's an hour long trip one way anyway) because of this as the sheer panic state that I'm in and dismissing classic migraine medicines makes me appear like a drug seeking lunatic anyway.   

I've done headache diaries for years. I've tried Imitrex and other migraine meds (they don't normally work at all - some cause panic attacks), blood pressure medication as a preventive (get too low of a BP then), amitriptaline (sp?) which has awful side effects on its own, Maxalt wafers (joke), yada yada. If another doctor tells me to take a combination of extra-strength Tylenol and Advil I'm going to slap him/her. Nothing like putting on a bandaid on a gaping bullet wound  .

The other thing about my 'situation' is that my headaches don't seem to come as frequently as many of you describe. I'll go through phases where I'll get 10 of them a month for two or three months, then none for five months. Or sometimes I'll just get ONE in that five month break. *shrugs*.

But all the other questions in those quizzes, all clearly point to cluster. They've been so bad that if I'm around people that don't know what the hell (such as being in a hotel out of town for business and asking the front desk to call me a cab at 3am - not being able to speak clearly) they call an ambulance thinking I'm having a stroke. Talk about embarrassment on top of the pain. Then I'm in the ambulance and they call for advanced life support because my BP is plummetting and then skyrocketing within a 60 sec time frame - slurring words, etc. etc. You all seem to know the drill.

So my question to you all is this: I've seen quite a few doctors (GP's and ER doctors) all who seem to want to start from scratch (headache diaries, BP meds, Migraine Rx, etc), and either tell me to take Tylenol and go and lie down in a dark room (  ) or look at me like I'm seeking when I ask for something stronger (Dilaudid, Morphine, Demerol, whatever).  Nothing seems to 'prevent' these things per say so... to me, it's only about treating "the beast" once it decides to prey on me.

What questions, or things in particular should I be concentrating on with my very limited time with this specialist?

Edited to add:
Oh, I should mention that I haven't been formally diagnosed with either Migraine or Cluster. I've had one ER doctor mention to me that he didn't think the headache I was suffering was migraine; that it sounded more like a "cluster headache" which is what prompted me to do look it up as I had never heard of it. That was a few years ago. Since then, I've mentioned the possibility of Cluster vs. Migraine to my doctor (and follow up doctors) and none of them seem to be too interested in exploring "what" and just keep throwing the same old same old treatments at me (Maxalt, Imitrex, Amitriptiline, some throw T-3's at me...) I've never even heard of O2 being a possible treatment.

Welcome Tish,

  Quote:


If you have ever talked to a person with Migraines or read about them you will realize that what you just described above is NOT Migraines.  For a Migrainer to rock, pace, bang their head...well they will tell you that is something they would never, ever do.  That said:

Narcotic paun killers are a BIG NO-NO arould here for clusters.  The duration of our cyclic attacks would make them a bigger problem with addiction since it takes months to go through a cycle.  ALSO.. it has been reported here with ever greater consistancy thru the years that narcotics have not helped and in fact...prolonged a cycle and in fact..caused rebound headaches from hell.

While realizing that you live in a rural area, it just might be worth your while to drive to a bigger city to see a competant headache specialist.  You shouldn't have to suffer like this just because you live far away from a big town.  Before you try to see anyone however...please, please, please famialize yourself with CH by rading around here.  Start with the ,links to the left.  The more you know...the better you will be treated.  Knowledge is power around here.   

Ask questions here and know that we will help you through this.  O.K.?

Linda

We may hope the neuro has some knowledge of headache and Cluster, in particular. Assuming travel time limits access to the neuro easily and/or may no be other doc with headache experience, I'm going to throw some basic infor for you to digest and to print out to take with you to the doc. (Many of us have had to educate our docs so they they could care for us!)
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PDF file, below. In time the med names will become familiar
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Verapamil is the most commonly used med to reduce/prevent Clusters. Print this article for the doc because dosing us unusually high when used for Cluster and docs who don't know get scared.
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Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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You explore these sites for basic information.


Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  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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Get back with a report of your visit so that we have an idea of his response, treatments given, etc.

For the time being, keep using this section to post new messages so that we have all you messags grouped in one place. Your infor/question get lost is you scatter them in different major topic areas.

The most important thing for you at your neuro appointment is to insist on an MRI of your noggin so anything more nefarious can be ruled out.