My name is Shannon. I am from MN and am 31 years old with a husband and three kids. I had my first cluster headache series about 5 or 6 years ago and they lasted for about two weeks but always during the day and no where near as painful as the ones this year. I suffered a TIA and was put on topamax back then and then got off when I didnt suffer from them anymore. Towards the end of April of this year I suffered one in the middle of the night. The pain was so immense I thought I was having a stroke or dying from something exploding in my head. I went to the ER. The next night..had another. Tried to deal with it and it was hard even for someone who gave birth to all three kids naturally at 10lbs a pop! For almost two months I had the headaches nearly every night with maybe one night of sleep (if you wanna call it that). I had more of a fear constantly that I was going to have another one. The doc told me to drink a pot of coffee but that does not help at 2am when your heart is already racing from panic from pain! After 7 plus visits to the ER I cried to the doctor and told him I could not do it one more night. I was beginning to hallicinate and felt like I was in a Freddy Kreuger movie afraid to fall asleep. I would have panic attacks every night! The pain was worse then child birth. June 9th of this year was my last headache. That was little over 6 months ago and I have a fear still all the time that "is tonight going to be the night". I think I suffer from severe post tramatic stress disorder. I am on Topamax right now and have a gazillion "emergency" meds on standby just in case! I have no idea what my triggers are but every time I feel and ich of ear pain I panic or a small neck pain I cant sleep because Im scared. I feel alone in knowing the pain and the fear. I feel like I have gone crazy cuz now I worry that Im contantly dying form other crap all the time. I have dreams that I have some weird cancer that they arent finding or soemthing all the time. I have never been like this. Have always been a vibrant woman with a strong taste for life and I feel like IM lost now...like a part of me was taken.

I had a similar experience in February when I got my first CH.  Mine lasted for about 7 weeks and at the height I was getting 6 a day.  I called Mayo and convinced my GP to give me a referral (he was amazed that I got an appointment only 2 weeks out).  They were exhaustive in testing to find a cause, but at least my neurologist there gave me Verapamil, Imitrex injectable, and a scrip for oxygen immediately even before running any tests.  My GP now gives me what I need when I call him because I've got the prestige of Mayo Clinic backing me up.  I'm now in my second round, but I feel like I'm more in control because I have some tools rather than just suffering.

I hope you can get some tools to help you gain some control.

ER is usually the lest useful way to get good care for Cluster. Finding a skilled doc is essential because most docs have very little training/experience with complex headache disorders.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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Starting to learn about Cluster is very useful but not a substitute for a good doc who can do a good diagnostic work-up. There are a number of conditions which mimic Cluster, but which are no headache disorders, and so an accurate Dx essential.
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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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Three 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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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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Print the PDF file, below an keep until you have lined up a good doc. Then this becomes a good tool to discuss treatment options.

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Welcome to the board Shancan, I'll echo what Bob and Guenter have said. GP's know next to nothing about CH and most neuros know very little. A headache specialist neuro is what you need for an accurate diagnosis and an effective treatment regimen.

Minnesota

Cambridge:
Dr. Jane M. Achenbach
CCambridge Medical Center

Eagan:
Dr. John Peers Robrock (PCP)

Park Nicollet Clinic—Eagan

Maplewood:
Dr. Michael P. Sethna
Noran Neurological Clinic

These are docs in the Minnesota area other CH sufferers have used succesfully, are any near you?

Joe

Hi Shannon. If I read your post correctly, this is what you were asking:


Quote:

That was little over 6 months ago and I have a fear still all the time that "is tonight going to be the night". I think I suffer from severe post tramatic stress disorder.

So at the moment, pain is not the issue, but fear of pain returning is. I get it. Let me start by saying you probably do have some elements of PTSD. Most of us do. An episodic cycle, or a particularly bad segment in a chronic's cycle, can and does produce tremendous fear.

There are many ways to manage fear but I prefer a behavioral approach. Put in place those things that will help you deal with whatever comes you way, and you can proceed with confidence that if the worst happens, you are prepared to deal effectively with it.

What this looks like for me is: a backup tank or two of O2; a stockpile of Migranal and Imitrex; a case of Monster; and some pain meds to deal with the aftereffects if they are present.

I know these things work to abort my hit. I also take preventatives (for me that's verapamil and lithium) in order to keep the beast leashed.

You haven't lost yourself, but you are losing self-confidence. Take control of your circumstances and surround yourself with a decent arsenal that is effective. Beat back the beast a few times and your confidence with return.

Email if you like. God bless. lance