Hello,

I'm a newly dx cluster head.  Dr. says I'm atypical because my symptoms are not classic.  Mine start in the back of my head, not the eye and then make my whole head hurt, they are sudden and last about an hour. I've had an mri and blood work, all normal and are working on getting right combo/dosage of meds.  Right now on topamax and norgesic.  I was wondering if anyone else has had these type of symptoms?

Thank you.

Hi, welcome to the family. Is your DR a Headache specialist?
Good to here you have had an MRI to determine that there is nothing more sinister going on.
Now your work starts!! There is lots to read here and lots of support.
Please read the o2 info as it has proved to be very effective for many of us.
I can only speak for myself, but I never feel his impending arrival in my eye first.

All the best Iddy :)

Hi bgonyea!  No back of the head stuff for 'ol Shaggy, I'll be interested to follow this thread and see what others say.

Can you provide more info like, how long you have had the pain, triggers?, what relieves the pain if anything?, daily attacks?  time of day? and any other things that happen during the attacks.

Given the disappearing nature of the episodic CH cycle and the length before a re-occurance, sometimes it takes years to figure this stuff out.  20 years for me, but I am not the smartest tool in the toolshed, and I never had a headache specialist to work with.

Good luck daddy-o!

--Shaggy

I'm not going to say that you "don't" have Ch, but what you discribe, especially the all over head pain, is unlike any cluster I'd ever heard of.

Because Cluster Headaches, and Organizations such as OUCH and Clusterbusters have brought more focus onto this condition, in addition to Dr.s getting as little as 4 hours education in headaches of all kinds in school, the chances of your Cluster Dx being a poor one is very high.

Please do let us know more about your headaches.  Frequency, duration, How they develop and how they end. 

There are so many headache conditions out there that have symptoms that overlap.  Many of the meds we take for CH are dangerous if used for other headache conditions.

We aren't doctors, but there are hundreds of years of experience in suffering this condition combined here in this little corner of cyber space. 

We'll help you the best we can.

Yes, I had the same back-of-the-head site which evolved, over a period of two-years, to the classic pattern.

At this early stage, the issue is finding meds which help and don't be concerned about the wandering symptoms. It's not unusual....

Thank you all for your replies!!  Let's see what else I can add.....I am seeing a neurologist.   All this started about 3 1/2 weeks ago.  These only happen at night usually about 9 or 10 pm and again about 2 or 3 am and they do wake me up.  They happen suddenly like I just got hit or stabbed in the head and then someone put my head in a vice and tightened it just short of my skull exploding and then leaving me there for about an hour and slowy they start subsiding.  I am now on Topamax 100mg 2x a day and norgesic every 4 hours as needed.  These head pains are down to just the 2-3am episode and they are getting a little less intense. 

I very much appreciate all your replies, this is so baffling, I've never experienced something like this, I would definitely say this is the worst pain I've ever experienced and before this had never even heard the term cluster headaches.

Thank you!!!

Your doc's  treatment is not consistent with the norm for cluster. Topamax is still, in my judgment, an experimental treatment, in that there is still not a solid record of success. Many other meds are standard in that there is a long track record.

The norgesic is a muscle relaxant and has no role in cluster.

Suggest you seek a headache specialist for this is a very complex area of medicine and we have plenty of reports that many docs do not have the degree of traininig and experinece to handle complex headache disorders.
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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.
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Sending two articles for your personal learning. The information can guide your discussions with any doc on treatment.
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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]
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See PDF file, below.

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Wow, Thank you for all of that info Bob!! If you don't mind me asking, what sort of meds/treatment has been successful for you?  I'd be interesting in hearing from others as well, what meds and/or treatments is working for others?

Well, I'm the old man around here and aged out of active cycles about 4-yrs ago. I was at my peak in the days before Imitrex and so Ergomar was my abortive.

Several years ago this abstract on Zyprexa hit the medical literature and I found it to be, for me, as good as Imitrex and at less cost. (Several other people here have reported good results.)
--
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Interestingly, Verapamil never worked for me. Back in the Dark Ages (when it was first suggested as a preventive, dosing was up to 1200mg and MORE!)

This was the AGE when a woman, seeking relief, beat her head on a concrete patio, caused a stroke, and died. So, no matter when you read now about this and that med, we are in glory days compared to 35-years ago.

But you will find a message in the meds section on the rediscovery of "ergots" (in title) which may have a second life for some people.

Welcome,

I am with ya 100% on the head in the vice thing, But mine never slowly subside, they go away just as quick as it came on. Just my 2 cents

Coach Bill

I disagree with Bob on topamax... it's been a lifesaver for me for the last 10+ years. BUT it doesn't work on everyone.. I've always taken the whole dose at night and have skipped most of the side effects.

My maintenance dose is 100mg, but in a high cycle (I"m chronic) I've been up to 400mg a day.

O2 is still the best abort I've found (I use a demand valve set up). Done right it will usually abort a CH in a few minutes.

Melatonin at night before bedtime kicks out most night hits for me (12-15mg).

Red Bull (or another energy drink with caffeine and taurine) works for a lot of us at the first of a hit to abort.

Keep us informed of your progress.... :-*

I go with a 2 pronged approach, prevent and abort.

Prevent: I use a 10 day predbisone taper while I start ramping up on lithium, my prevent med. I use 1200 mg a day while on cycle, blocks about 70% of my hits. Verapamil is a common first line prevent.

Abortive: Headache starts now what? First line abort should be oxygen. Breathing pure 02 will abort for me in less then 10 minutes. You need a non re breather mask and a high flow regulator, at least 15 LPM. Read the link on the left, oxygen info, been a life saver for many,

I occasionally resort to imitrex injectable if I'm getting beat up bad. Energy drinks, Red Bull, Rock Star, any contaiing caffeine and taurine, chugged at the start will abort or reduce an attack for many.

Joe

Thank again to you all for your feedback.  Just to update you.....The last few nights I have been down to just 1 attack about 2-3am and it is not that bad, I take a norgesic and am able to fall back asleep.  I am still taking Topamax 100mg 2x a day and Norgesic 25mg every 4 hours as needed.  Either the headaches are getting better or this combo of meds is helping, not sure which.  You all and this site have been a big help, I now am armed with more info, lots to think about, and lots of questions for my doctor at my next follow up visit.

Thanks so much!!!!  Keep the info comin!

Caffeine and psilocybes.  I don't seem to need the taurine as a coca cola in the morning will push my morning kipper to later in the day.  That is my morning prevent.  Coffee, tea or caffeine pill works too.  Got to do it in the early afternoon too, or I'll be kippin' by 2pm.  Caffeine would probably suck for the nighttime sufferers.

Mushrooms as per the Clusterbusters website has been the savior the last 1 1/2 years.  Works good, not legal, check it out.  Small, non-recreational doses can work wonders.

--shaggy