I started getting these headaches 6 yrs. ago.  Until 2 yrs. ago I didn't have a name for them.  I never had a family doc and was using urgent care clinics.  I finally went to a family doc and he diagnosed me with CH's after many CT's, MRI's and MRA's.  I took immitrex injection and pills, indomethacin, methlprednisone, verapamil, and relpax under my family doctors care.  The beginning of last month I started another cycle. Mine come once or twice a year and last 2-3 months.  I have 4-6 Headaches per day and they last anywhere from 1 to 4 hours.  Two to three being the most common.  I was referred to a neurologist that specializes in headaches a month ago.  He put me on lithium carbonate, divalproex and then topirimate.  So far nothing has touched them.  During my cycles I have used hydrocodone and oxycodone as a bandaid.  Today my doc told me he is out of ideas and he has a problem with the amount of HA's I have in a day.  He said it is abnormal to have that many and he feels I am a drug seeker.  Need some help on what to try next. New doc? New treatments? Anything will help. thanks. Almost forgot tried O2 also

Another vote here for oxygen. I can normally kill a CH in well under 10 minutes with a fraction of the pain of not having it. Read up the info on the left as it describes what does work well.

Quote:


You really need to see a neurologist who is a headache specialist as they will have a lot more experience and knowledge around CHs that a family doc won't have.

Read up other posts here and you'll soon have a better understanding of CHs than most doctors. Also ask away with questions. Everyone here either gets CHs or supports people with them, so we know just what it's like to get them.

Great info on the O2.  It seems I have the wrong setup.  Regulator and mask.  I will get those changed and give it another try.

The clue for me is a HEADACHE doc who is willing to dump you in one month! In this time, you are barely starting to work thru the multiple combinations of treatment which are often required to get on top to complex headache disorders.

So, seek another headache doc and stop the pain meds. They too easily lead to rebound attacks which make the picture more impossible to resolve.
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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. 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.
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Print out the PDF file, below, and the following article. They will give you some ideas to lead your discussions with any doc you see.

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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]

Let me echo Bob and Joe.  You've had some excellent advice to this point.  There is a lot more information available on this site.  You will know more than 99.9% of the Drs. by the time you are through digesting all of this.  Actually, you won't need all of it, because some of it is repeated, but take your time and read, read, and then read some more.  As you are reading questions will come up.  ASK!  Don't be afraid to show ignorance of something.  Ignorance merely means you don't know, and there is nothing wrong with that.  Remaining ignorant is a problem.

Jerry

Personally I need a higher flow than 15 LPM - in fact when high cycle hits I need to hyperventilate at 40 LPM (!), so IMO your best insurance is to get a regulator that can really get up there.

Then there are the demand valve systems that some folks on here use (I think Giuseppei/Joe does?) that apparently make LPM a non issue.

D.D. wrote on Oct 19^th, 2010 at 3:38pm:


Hello DD and Welcome!
25 lpm regulator
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You can also order specialized cluster head equipment through LifeGas, available on-line, although I had a good experience talking with them on the phone. And if you can find one you can afford, I'd really recommend the demand flow valve if the 25lpm doesn't work. It saves O2 in between breaths, and helps you get lots of O2 at the start of an attack by pushing the button. Best of luck, and God bless! lance

I'm still waiting on the new reg and mask, hopefully I'll have them by tommorrow.  Melatonin is awesome.  I had never known it could help until I found this site.  Started it at the beginning of this week and it has lowered my night hits significantly.  I forgot what it was like to get some sleep. Thanks again for all your help.

hi there D.D

Nice to meet you and welcome to the CH Clan

good advice given already  i dont have anything else to add other than piffle and hellos

Heads up

regards
Blue

A doc who will listen to you....worth their weight in gold! You may find you have to increase both the verapamil and the lithium, I use 1200 mg of lithium a day while in cycle to get relief, at that dose it'll block 60-70% of my hits.

People on verapamil go as high as 960 a day. Both require blood testing as you SLOWLY go up in dosing to monitor toxicity with the lithium, and heart issues with the verapamil.

Congrats on the understanding doctor...that's great news! And the oxygen at 15 LPM may just do the trick, it does for many. Good luck with that.

Joe

9 posts and he's already recruiting new members, alright!

Someone like her would be a great addition to this place!

Joe