Nobody has responded to me am I doing this right? :-/

HI Tamara and Welcome!

I had to search for your first post.....I must admit I hadn't seen where you had posted. For everyone's benefit, I have copied and pasted your first post below.

Quote:

Hello Iam a newcomer, I have read alot of your messages boards. I have a long history of CH's going on 5 years. I am chronic. I still a little nerves tellin my experience. I still have to get everything in place in my mushing head. I have been on this site years ago. And now I cannot go thru this alone. I used to think my family is all I needed. But the end of the line they have know Idea the beast as you call it. I seems to be just habbit to them now and I assure You I will never just get use to this . So I know I will find alot compasion people here 5+ yrs for me is way to long never have missed more than 3 weeks of no headaches So for now I will leave it at this and tell my story. Thanks all who are hear!!!!!!!!!!!

Tell us what meds you are using......what you've found that works and what doesn't.

Bill

Thanks Bob, I'am having a hard time here in Orlando Fl. to get a Doctor to believe me that I have Cluster headaches!!! I'am on right now Verapamil,Indomethacin.propanolo(heart meds) and elivil. I was heavely on Lithium was hospitalized for Lithium intoxification for 7 days . I recentlently saw a Neuro cash paid 225.00 no insurance and she made fun of me and said I needed to see a phyco. This meds are from my Pyrmary care physian

Your brief summary of current treatments is a perfect snapshot of so many problems folks here have experienced!

You must dump your primary care as your helper for CH. Find a good headache doc FIRST.
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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.  Call 1-800-643-5552; 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.
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For your benefit, print this entire article (link online2). It's not as hard reading as this abstract suggests and it will give you some basic information for you--and to use in talking to your new headache doc.
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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]

Hi Tamara,

From one Clusterhead to another - welcome.  You've come to the right place.  Many neuros, and most primary care physicians, do not understand cluster headaches.   I had been under the care of a headache spcialist for over 10 months, when I told my primary care physician in May 2006, that I had cluster headaches.  Like most, she didn't really know what they are, and assumed that they were like migraines (not!!).  One of the reasons your erstwhile neuro may have thought you were nuts, was because unlike a migraine, CH hits us hard and fast.  It's not like  a migraine, where one headache goes on and on for days.  As a result, it is VERY seldom that a neuro will ever see you having a CH attack (but it does happen - a friend of my mom's daughter, was diagnosed with CH, due to the fact that she had CH in the middle of having an MRI [a VERY rare occurance]).  So, a neuro has to take your word that you're having CH.  Throw in the fact, that until recent times, it was thought that women having CH were rare compared to men with it (not at all true - every new CH study shows more and more women with this disorder) , and you see why some doctors doubt us.   Like others have said, you need to find a headache specialist.

Hugs & Good Luck,
Ellen

Bob Johnson wrote on May 25^th, 2009 at 1:14pm:

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.]

Hadn't read this before.

If some of you older members haven't read this one, I heartily suggest that you do so.  Excellent material.

Thanks for providing this link, Bob.

Best wishes,

George

Thanks everybody I will print the articals and find a good headaches DR here that is my first priority.

Hi Tamara, welcome to the board. Bob's advice is golden. Sounds like you may have insurance issues. If so, look into the oxygen therapy. If you have to go out of pocket, it's a fairly cheap route to go. E-tanks cast $5 a month to rent and $11-$15 per refill.

Critical though to get a neuro to confirm the diagnosis. If you're not already keeping a headache calendar start one. Keep detailed notes of when they start, how fast they build, how high the pain goes, (the KIP scale on the left is an excelent tool for that) how long it stays at peak, how fast it goes away. Describe the location and type of pain during the attack. The more detailed you can get, the better a chance for the diagnosing doctor to figure out exactly what the issues are.

Sorry you're hurting..that sucks. :'(

Joe

Hi Tamara,

Sorry we missed your first post. Oversight only. But welcome to Clusterville.

O2 O2 O2.  Find a doc and get O2 (check the O2 therapy on the left and make SURE you get it right - high flow with a non-rebreather mask).  It works wonders for about 70% of us to abort without meds.

But finding a doc is the most important thing. sounds like you need to fire the jerks you've been going to. A good doc is worth his/her weight in gold in dealing with CH. But a lot of us have gone thru a bunch before we found the RIGHT one. Go armed with literature and you must be your best advocate - and for goodness sakes find one that will LISTEN to you.

Remember most GPs don't treat CHers very often (if ever) and don't have a clue. We MUST educate them (if they're willing to be educated). If they're not willing to listen - go elsewhere.

Finding a good neuro is very important - one who knows about CH - ASK him/her if he/she has ever treated a CH patient and how many. If they have a "god" complex - find another doc - you won't get the right treatment.

Read read read.... we have several hundred years of good literature on this site and the latest stuff on CH (probably more than most medical schools). And we're here to help. Ask questions, vent, whatever. And remember - we're all in the same boat and we do UNDERSTAND what you're going thru. I doubt you can pose a problem that someone here hasn't gone thru...

Hugs BD :-*