Hi, My name is Beth and after seeing several doctors, i have finally been diagnosed with Cluster Headaches.  I live in Kodak TN which is just outside the Knoxville TN area.  The dr. that is treating me now is my Primary Care dr.  I have been having this headaches for a couple of years now, and know nearly nothing about them, which is why i searched for this site after i was diagnosed with these last week.  It's like OMG!  You mean i'm really not going crazy after all????  These are THE WORST.  In August i had a 3 level discectomy on my neck, and was assured that would take care of the headaches.  Well, of course, it didn't.  But some how just knowing that there is a name for this hell and others know what i'm talking about make it seem easier.  Here is some more info about me.  Any advice would be greatly appreciated.

A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?

I was diagnosed about a week ago by my new primary care dr.  I also have diabetes and neck problems. 

B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.           

I haven't had real success with anything.  I take percocet and 2 benydryl which sometimes helps me to sleep.  My dr. has now prescribed PROPRANOLOL 40MG TABLETS 2 tabs twice daily.  I think that is not for the pain, but to keep me from getting clusters.


C. Have you used or explored any alternative treatments (and ditto)?

I read the article here about the seeds, but leery of trying that.  The water thing i'm definately going to try.


D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?         

it varies, but mostly I miss time from work, My husband and i own an accounting firm, and at this time of year, It is a crisis if i have to miss work.  Also, I have to cancel other social things,  I pretty much isolate myself when i am in a cluster, because the only person in my family that understands is my husband.  But i don't think even he knows how bad they really hurt.  I think he thinks that i am embellishing for sympathy.

E. Do you have a good, basic understanding of Cluster and its treatment or do you want sources of  information about these complex disorders. skills in coping with your headaches

I definately need to know more.  My dr hasn't told me anything about them, except that after doing some tests, listening to me describe the frequency pain etc, and ruling out other things, she told me that I was experiencing cluster headaches.  Anything i could find out would be wonderful. 

One thing i was wondering....How do i do a headache diary?  Is it similar to the one i kept for my doctor...what i ate, what i was doing etc when the headaches happened?

I look forward to learning more and getting to know the people here.  Just to know i'm not a lone is a big comfort.

Thank you.

Welcome Beth!

If you haven't done so already, check out the O2 guide here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE . Many of us find great success in using high flow O2 to abort our clusters.

OUCH is having their annual convention in Nashville in July featuring some very informative speakers (Dr. Peter Goadsby and Bob Wold to name a couple). Read about the goings on here:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE .

Your doc's treatment is about 30-yrs out of date. Suggest that you find a headache specialist, if at all possible, for most docs lack good education in, what most folks don't recognize, is a complex area of medicine.
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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. 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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See the PDF file, below, for the most common treatments.
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And print out:




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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Start to explore the buttons, left, starting with the OUCH site and its many internal links.

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Beth, you asked about a headache diary - here is what we use. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.  This is from our OUCH website (Organizaiton for the Understanding of Cluster Headaches). Check it out too for alot of information for you and your doctors.

Can only re-emphasize that you have a very timely opportunity to learn more about CH treatment, coping and meet others who share your pain. Please try to come to Nashville this year. We fly in from all over the country (even folks internationally sometimes) for this. Bring your supporter or family.

You will be glad. And pull up a chair and stick with us.

Christy

Quote:

B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.             I haven't had real success with anything.  I take percocet and 2 benydryl which sometimes helps me to sleep.  My dr. has now prescribed PROPRANOLOL 40MG TABLETS 2 tabs twice daily.  I think that is not for the pain, but to keep me from getting clusters.

As you have experienced, being diagnosed can be a difficult and important first step, but being diagnosed and getting proper treatment are two important different steps.  A diagnosing doctor may not treat properly, also a sometimes difficult and important second step.  How is the propranolol doing at preventing the clusters?

Using pain killers are not recommended for clusters.  The best pain killer is stopping or preventing the cluster headaches, Bob's article mentions these two methods of coping.  Oxygen is one of the best to stop or abort the hit, and there are several preventive medications to prevent them from occurring.  Give feedback to your doctor about what he has prescribed to prevent them, and as Bill first mentioned, a prescription for oxygen would be a best abortive to stop a hit when they do happen.




Quote:

I have been having this headaches for a couple of years now...

Do they occur for a few weeks or months and then go away or have the cluster headaches been constant for two years?

The convention in Nashville is always a "I'm so glad I went!" experience.  There will also be oxygen available there to manage if needed.

Thank you so much to all that have responded!  I actually cried when i saw that i had responses and that people actually believed that i hurt!  I am going to print out the info about the oxygen that you suggested Racer 1, and i'm going to make an appointment with my Primary Care to show it to her, and to also ask for referral to a headache specialist.  (My insurance requires this).  I will check out the sites first to see if i can find a Dr. in my area.

Thank you for the link to the headache diary, because i had no idea where to start.

My husband said we were DEFINATELY going to Nashville if that is where we can be with others who are experiencing this.  I haven't looked at the Convention link yet,  But I think i am lucky in finding this website in time to make arrangements to go.

Again...Thank you everyone for your kindness and advice.  I did want to say, that my headaches haven't been constant for the 2 years, but i will get them, they last for about a month (hurting, not hurting), then I wake up one morning and they are gone for about 6 weeks or so...then Boom....there they are again.  Is there any info about triggers?  I have no idea what starts mine.  Is it possible to know what your triggers are?

Thank you everyone!!!

I welcome you too Beth.   Knoxville is only 1 & 1/2 to 2 hrs. away from Nashville where our convention will be held and I SO encourage you to attend.  You will be so amazed at what you can learn from not only the speakers....but from being around others who know exactly  what you're going through.  I've seen grown men cry when they have talked to us one on one and realized they were not alone in this.  There isn't anything else you can do for yourself that will compare to going to this convention. 


Linda


P.S. Oh... we all have a lot of fun at these things every year too.  Some of the funniest people I've ever met are clusterheads.

Quote:

I actually cried when i saw that i had responses and that people actually believed that i hurt!

Yes it is quite profound to talk with someone that knows the worst pain you can feel.
I dont kill ya though..
I suppose your doc will try cafergot next, it's 30 years out of date as well. Get some 02.
Get to know Linda.
all the best
the bb

Quote:

Some of the funniest people I've ever met are clusterheads.

The BBZ (above is only one of those funny people I was referring to.  LOL

Triggers come in a variety package because we are all so different. Some are very specific to the individual, but others seem to be much more common. For example, alcohol for many can be a near instant trigger. So can solvents, or perfumey things or any strong odor. For some, exertion is a trigger; for others, exertion can actually help abort the attack. For many of us, naps in the middle of the day are triggers. But so also is REM sleep at night. Cig smoke can trigger for most of us also. I don't mean for this to be discouraging because as you keep your diary, and keep track of what you were doing just before a hit, you'll begin to sort it out. You can also use the search function here to find threads on triggers. We talk a lot about them because if we can avoid a hit by staying away from something, that's better than having to abort a hit. Eliminating triggers won't get rid of the CHs, but can help in managing them. God bless. lance

My husband suffers from CH. I think your husband should research the site for himself. I sit with my husband through his headaches (usually 30 min), rub his back, and help him focus on breathing, what ever helps him. I get him big glasses of ice water and keep the popsicles coming.

Researching this site has helped me understand what my husband goes through. I don't think I ever knew how bad the pain was. I went through childbirth! Its not that I didn't believe him, I just needed more education on what he was going through.

Our GP has prescribed Propranolol. Sean's only been taking it for 5 days, but has seen improvement in the intensity of pain. We're not sure if this is just the end of his cycle or if the propranolol is really working, but we're happy to have the mostly pain free days.

Good luck! This site is awesome!
Carrie