Hi my name is Blair.  I'm living in Houston, Tx i haven't lived here long I'm currently in xray school.  I've had cluster headaches for about 5 years now.  I just got diagnosed this cycle this is the first time I've seen a Dr about the headaches.  It seems I've skipped a couple cycles.  After some research i probably skipped them because I did mushrooms in the past every couple of months, but now in a new place i don't have that option.  My headaches are effecting my schooling.  I'm relieved to find a place that people understand what i'm going through.  I've seen a neurologist but it kind of seems that he doesn't take my problem seriously and the medication he gave me is crap it doesn't' do anything for me.  I'm 23 years old btw.   I usually get about 3 clusters a day, but strangely at different times.  Thanks for letting me vent a little bit.  Nice to meet all of you.

Blair

Hey Blair,

Welcome aboard.  You've come to the right place.  Lots of old timers with lots of experience controlling cluster headaches here.  Do some reading and do ask questions when you have them...

Check your PM Inbox at the upper left corner of this screen and click on "1 new message", I've left you some information.

Take care,

V/R, Batch

Quote:

I've seen a neurologist but it kind of seems that he doesn't take my problem seriously and the medication he gave me is crap it doesn't' do anything for me.

Hi Blaire.  It sounds like maybe you need to see a new Doctor.  If a Doctor doesn't take you seriously....well, I'm jest saying.

What meds IS he giving you?   Any Doctor worth his license will take a 2-pronged approach.  A preventative such as Lithium or Verapamil and an abortive such as pure oxygen and Imitrex.   (Imitrex to be used sparingly) 

Welcome to this forum/site and please ask any questions you need to.  O.K.?  None of us are Doctors but collectively we have 1000's of yrs. of experience of dealing with cluster headaches so we may be of some help to you.

Linda

Don't waste your time with a doc who doesn't take your situation seriously.
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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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Then a serious run on learning the basics so that you can gain control before the school becomes a seriously problem.
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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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Print out the PDF file below and it will lead your discussions with any doc you see.
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Very likely you can find the first title in your medical library.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Find the doc first for you are running naked until you get on a preventive med (which will reduce the frequency/intensity of attacks), and an abortive to handle the attacks. Once you have a balanced package working you have an excellent chance of being able to handle school nicely.
===Secondary sources of info, as you have time.


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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"

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Hi Blair.  I was just perusing the site as I sit here 11 weeks into my recent episode and saw your post.  Like you I started with CH around age 19 and didn't see anyone about it until I was 23.  Then the neurologist I saw simply confirmed CH and gave me a few Imitrex nasal samples (there was no way I could have afforded a full arsenal back then).  They didn't help much anyway.  He didn't say anything about verapamil or prednisone or oxygen etc. etc.  I found out about all that from this site, many years later.  Armed with this info I went to a regular GP and she gave me the prescriptions I needed (asked for).  Its made a HUGE difference - like night and day really - in managing the headaches and reducing the pain.  I may have got lucky that the first GP I saw after knowing what I needed to know was pretty good, but my point is that the guy I saw when I was 23 simply stunk as a caregiver.  It happens sometimes but armed with the info on this site and being in a big city you can surely find the treatment you need.   So keep trying with another doctor.  You didnt mention which meds you were taking that didnt work, but oxygen makes a big difference for most and a list of preventatives can help a lot too.  Its so worth it.

Welcome to the board Blair.  Bob is right, we have seen the best results from getting into a headache specialist neuro. 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 33 years, 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:

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

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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. You've already had some experience with one of the "busting" options, but there are several others you should look at.

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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