Hi there,

My name is Virginia, and I would like to share my story because I have found that women who suffer from cluster headaches are rare. So here goes:

I have had migraines most of my adult life, but they were few and far between, most often associated with my periods. After the birth of my youngest son, who is now almost 6, I woke up one day with the most horrendous headache I had ever had and I knew right away it was no migraine, I wasnt nauseous, I wasnt hiding from the light and it hurt on my left temple only, this stabbing pain like someone was taking a ice pick and ramming it into my temple. Well naturally I was scared and so I saw my dr, who sent me to a neurologist, long story short on this part, 5 neurologists, three years, two hospital stays and numerous moments of serious aggravation, I finally went to see a pain management doctor, who listened to me for five minutes and said I had cluster headaches. What a relief, someone who knew what it was and wanted to treat it.

The dr was a godsend, he put lidocaine injections into my temple and the pain went from being nonstop,24 hours to nothing. Well at this point I hadnt done my research and so I didnt know that it would come back, lucky me. See I had chronic cluster headaches but the lidocaine made them episodic. I have never felt a pain like this when they come and when they arent here I am so happy. I am actually in the middle of a episode right now, and while I would love to rant and rave and scream and yell, I cant, I have to be a mom because my husband is active duty, so most of the time I am the only one here. I cope, barely, but I do.

I guess what I am saying with this is that there is no telling what we can endure when we have no choice. I would never wish this headache on anyone and I would give anything to never have it again. I think though, that ER drs should have to feel this once so that they can understand what we are going through, because normally we have been dealing with the pain and are only at the ER because we are at our limit. There is a reason these headaches are called suicide headaches.

Thanks for sharing a not too uncommon story around Cluster.

But--what's going on now? Still having Clusters? Under treatment?; need any information?
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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]

I live in Florida, and as for whats going on now.....I have a good dr now, and I hadnt been having the headaches except very rarely and usually my meds, when taken early ease it enough that I can live....at the moment though I have had my current headache for four days now....I went to the ER on Friday and even though the ER dr said oxygen is best, he didnt give me any, gave me toradol, phenergan and benadryl, none of which did a thing and I still have the headache. My dr is on vacation for thanksgiving so when she comes back I hope to get a new referral for my pain management dr and hopefully get this handled.

IF you have been diagnosed as having Cluster: the meds in your last message says you are not being treated properly. These meds a classic for migraine.

These pages are full of situations where folks have wandered around for years not getting relief because so many docs have little training/experience in dealing with complex headache disorders.

If at all possible, the best step is a headche specialist:

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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Please read the entire article which I sent and print out the PDF file, below. It outlines the type of meds which are standard for Cluster.

With good management, it's possible to obtain nearly 100% relief from most attacks AND to reduce/prevent future attacks. It does take a good doc.

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Quote:

With good management, it's possible to obtain nearly 100% relief from most attacks AND to reduce/prevent future attacks. It does take a good doc.

Virginia, please take all Bob has said to heart. It is all true. A good doc is invaluable, but one who actually knows how to treat CHs, or is willing to learn, is essential. You need a new and different CH specific plan of attack. Blessings. lance

Please read this link when you get a minute. Having a high flow oxygen set up at your house will totally change how you view the beast.

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

Wishing you some peace and pain free time soon.

Joe

I know I need a good headache doctor but I am terrified of going to another neurologist after the hell I went through for three years. I literally had one neurologist tell me that the headaches would go away if I could just distract myself enough. The first one looked in my eyes, said I wasnt having a stroke and then gave me some med that changed my tastebuds, when it didnt work he just upped the dose...and thats just the hell with two of them....

My pain management dr at least managed to take the headaches from every single moment to  episodic. I am going to find out about oxygen from my dr when she comes back from her vacation. I just dont know if I can overcome my fear of neurologists....I would have to have a seriously good recommendation from someone who has cluster headaches. I dont mean to be stubborn but I know everyone here has probably been treated like a idiot by some dr somewhere, I just got 5 in a row is all.

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

Thanks for the link.....-groans- the only one in my area does not take Tricare......-would roll my eyes but since am in the middle of a episode that would hurt like hell-

Hi Virginia,

 
Quote:

I have found that women who suffer from cluster headaches are rare

While it's true that more men get these than women..calling it "rare"  is a misnomer.  Trust me.  If you stick around and read posts for very long you'll see LOTS of women with CH.  Oh..and don't let any Dr. tell you CH is rare for women. It's their uneducated way of dismissing you and by saying it's just Migraines.

24 years chronic CH

Virginia, you've blown by my message about how to find a HEADACHE SPECIALIST. We're not talking general neurologist. Research on generalists show how very little education/experience they have in treating complex headache disorders--the very reason the message zeros in on finding those skills you need.

Staying where you are doesn't sound attractive....

Hey Bob,

I am so sorry, I wasnt meaning to blow by your post about finding drs, believe me I dont want to go through that hell again. I looked at the link that Guiseppi put up for me and that is where I saw the one Dr in Jacksonville, he isnt on Tricares list......I will definately look at the headache link u put up and thank you so very much.