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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
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Would be useful to explore the buttons, left, starting with the OUCH site.

Some basic learning will help give you confidence as our work out a coherent treatment progam.




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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See the PDF file, below. Print out and use as a tool to discuss treatment options with you doc.
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Hope you are seeing a headache specialist. Much improves your odds of good treatment.

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. 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.

6. 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.

  Hi Frank and welcome.

  Quote:
   If you are talking about 48 hrs. straight with no rest in between than we would say that YES..that's very unusual. 

Quote:

Quote:


What we have learned here over the years is that narcotic pain-killers like Vicodin will cause rebound headaches from hell..which is no doubt what your Dr. is referring to  when he says,  "AND the treatments"   While you say it helps..you could be causing yourself more pain and more attacks than you need or want.

Hey Frank, welcome from another MA resident and CH warrior! I'm glad your cycle seems to be coming to an end, for now...I'm sure your aware this could change at a moment's notice. And I do get that vicodin can help following the kind of hits you were getting. I experienced something similar over the years with regular hits lasting a full 45 minutes coming at the regularly scheduled times, and once in awhile I wanted pain relievers just to deal in between hits. Those were pretty much the pre Oxygen days. Please read the posts concerning O2. It is the most effective abortive we have found. But it does require effective technique and equipment. Being in between cycles is a great time to prepare in case the beast comes a knockin' again. Good luck and God bless. lance

Thanks all!

As for Oxygen... yeah, that has been very helpful to me.  It didn't work very well at all at first, but I think as I got better at using it, I found it helpful.

I found that it had little effect at all on the first few attacks I had each day, but in my last month I'd say 1/3 of the time it could stop the final attack of the day.

Also, at night when I'd often take the Vicodin, I'd first try the O2.  That was helpful.

When the attacks finally stopped, we got rid of the O2 tank.  But my wife and I have been wondering if it wouldn't be bad to still have it around.

As for Imitrex?  Not for me.  Tried it a few times... and hated it.  Felt like I was going to have a heart attack and found it scary.  And that was a pretty low dose.

My Neurologist said that is a reaction some have, and it's not actually having a heart attack, but its tightness in the chest? 

Either way, I kind of have this bunker mentality.  If something has a chance of stopping the whole cycle... well then I'm willing to try it.  But if it is a drug which, at best, will avoid ONE attack during a day?  I just don't see it as being worth it.  Not for me anyway.  The fewer poisons I put in my body like that, I think the better.

I know of people for whom it's a wonder drug, and that's great... but I guess I'm not one of them.

One question I do have for all of you - Like I said, we're almost 7 weeks since the last attack.  But still I feel tired, I do get actually "headaches" and I've been laid low by a few of those.  Dr said I'll keep getting better each week, and I feel that is true.. but this feels like a long time. 

Anyone else deal with this kind of thing?

I was out of work for three months..and work was so great,  so I feel guilty as hell that I'm not 100 percent yet.  Not to mention the guilt I feel with my family about not being 100 percent.

Sometimes I think it's a bit of being paranoid and extra cautious... but I really don't know.  Like this morning... I woke with a headache and am powering through my day... but it wears on me.

Just curious how it goes for other people when the attacks start.

Thanks,
Frank

Hi Frank M & Welcome to Clusterville

  I'm chronic since 1/01 . . . wife found this site for me 2/02, after 13 months of tests, non-working meds, mis-diagnosis.  This place and these people gave me the info to take to my doc and finally have some control over this beast of ours.

  That first year of the beast I was always in fear of the next one (when will it come?, how long will it last?, how bad will it be?).  Was having 6-8 attacks daily, sometimes 3-5 at night.  Afraid to take my grandson to the woods or fishing by ourselves as I didn't want him to be the only witness to my stroke/death. . . . could not conceive of anything that could hurt that bad and that often and NOT kill you.

  You said you had 02.  What flow-rate do you use?  Non-rebreather mask (the one with the bag)?  If you haven't already acquired, get yourself an O2ptimask (links on the site - $27.50) . . . a huge improvement over the 1 litre mask your 02 supplier will have available. 

  I have some artery blockage and high cholesterol, so Imitrex is out for me . . . VERY dangerous and do consider those chest pains a warning.  02 is my only abortive (combined with energy drinks & icepack)

  You also mentioned you're taking Veralan.  Veralan is a capsule form of Verapamil . . . one of the most often used preventatives for CH.  It's a taper drug that's gradually increased til you hit an effective dose.  I had my first PF day (in over a year) when I got to 240 mg (considered minimum effective dose) . . . got as high as 480mg, then back to 360 mg maintenance dose which reduced the frequency/intensity of attacks to a level I could easily kill with the 02.  Many take MUCH higher doses and often in combination with Lithium or other meds.  Verapamil is a BP med and your doc should be monitoring your blood pressure . . . might possibly have something to do with your tiredness.  I stopped the Verap in 04' . . . at which time water therapy (see "water X 3" . . link on left) was working for me. 

  Currently my prevents are water therapy (it IS NOT easy to do) and the D3 regimen (see Batch's "123 Days PF . . . " link on the Treatments,Medications,Therapies board). 

  Read, read, read . . . ask any questions you may have.  You've found the motherlode of CH info/caring/sharing.

   Be Safe,   PFDANs

      Richard