I have had cluster headache for six years now and for the past three years it has been permanent. From three years now I've been experiencing them everyday. I'm getting other problems too with this headache can you help me find whether it's related to ch? My headache always increases after any mental or physical activity like cycling for more than 25 minutes or studying an hour it really triggers my ch for several days. Plz also tell me about any other problems you get with ch. Sorry if the info is incomplete this is my first post.

I'm not sure mental activity will bring on a CH, but can
bring on a headache, as for physical exercise, its known
to bring on an attack in some folk, but in others its a great
abortive, which makes us cluster heads unique, because
we are all different.

Cheers, Hoppy.

Hi and welcome

Exercise is weird with CH, for some like yourself it can seem to be a trigger and yet for some rigorous exercise can help get rid of a CH. However I've not seen anyone have a CH brought on by mental activity.

Are you working with a good headache specialist with CH experience? Who diagnosed you?

Have you got a preventive, something like verapamil, lithium or topomax, that will cut down how many CHs you get?

Have you got any CH abortives? Something like imitrex injections and oxygen? These can kill off a CH in a few minutes.

Where are you in the world? There are people from all over here on the forums, so someone may be able to give you local info.

Tell us more and people will be able to give you suggestions. Plus read all you can and you'll learn so much about CH.

winner19 wrote on Dec 21^st, 2014 at 3:15pm:

or studying an hour it really triggers my ch for several days.

Do you mean that you have one constant headache that lasts for several days? If yes, it probably is not a cluster headache. A cluster attack can last a couple of hours but not several days.

BobG wrote on Dec 22^nd, 2014 at 4:00am:

winner19 wrote on Dec 21st, 2014 at 3:15pm: or studying an hour it really triggers my ch for several days.  Do you mean that you have one constant headache that lasts for several days? If yes, it probably is not a cluster headache. A cluster attack can last a couple of hours but not several days.

What I mean is that these activities increases the intensity of the bouts of headache for several days.

Hoppy wrote on Dec 21^st, 2014 at 4:23pm:

I'm not sure mental activity will bring on a CH, but can bring on a headache, as for physical exercise, its known to bring on an attack in some folk, but in others its a great abortive, which makes us cluster heads unique, because we are all different. Cheers, Hoppy.

Really exercise is an abortive. Is it to be done on a specific time like at the beginning of an attack or it can be done anytime during the attack

Mike NZ wrote on Dec 22^nd, 2014 at 12:10am:

Hi and welcome Have you got a preventive, something like verapamil, lithium or topomax, that will cut down how many CHs you get? Have you got any CH abortives? Something like imitrex injections and oxygen? These can kill off a CH in a few minutes. .

I'm taking verapamil and lithium
And oxygen

What is your doc's experience in treating complex headache disorders? An experienced doc is the foundation  for a successful outcome.

With such an unstable pattern, that you report, it may be time to seek another evaluation from a specialist.
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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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Beyond the problems you mention, would be useful to confirm the diagnosis of Cluster. See:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Bob Johnson wrote on Dec 22^nd, 2014 at 8:14am:

What is your doc's experience in treating complex headache disorders? An experienced doc is the foundation  for a successful outcome. Link to: cluster-LIKE headache: IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

I have been to many neurologists who had different diagnosis but none could help me get some relief now out of those 3 are saying I have cluster headache(they were headache specialists) I have got some relief too. All my reports of several tests were normal which ruled out any other disease. Doctors are pretty much sure that I have CH.

This is where we get caught in a bind. There are no tests which are specific to diagnosing Cluster. And you can see from the long (and incomplete)list of Cluster-LIKE disorders that rather specific diagnostic work-up is often required to diagnose should your docs suspect one of them.

Since you are dealilng with a headache specialist (not a general neurologist, I assume) I'd suggest a sit-down and asking directly about the possibility of a Cluster-LIKE disorder. (You comment about tests having been done is rather too vague to know what they were doing.)

Since you report that no improvement is in sight, it's time to push for an expanded diagnostic approach.

winner19 wrote on Dec 22^nd, 2014 at 6:03am:

Mike NZ wrote on Dec 22nd, 2014 at 12:10am: Hi and welcome Have you got a preventive, something like verapamil, lithium or topomax, that will cut down how many CHs you get? Have you got any CH abortives? Something like imitrex injections and oxygen? These can kill off a CH in a few minutes. . I'm taking verapamil and lithium And oxygen

For oxygen, have you read the oxygen page - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - this has a load of useful info on how to get the best out of it.

I'd ask your doctor about also getting imitrex injections as whilst oxygen is a great abortive, you can't easily take it everywhere, like flying, so having an alternative abortive can make a lot of difference, especially one that can be discretely carried.

What dose of verapamil are you on? Whilst most people find 260-480mg a day is enough to be effective, some go to as high as 1000mg to get relief.

Hi winner,
From what I've read its best to start physical exercise
like jogging, on the onset of an attack before the pain
becomes to unbearable.

Hoppy.

Mike NZ wrote on Dec 22^nd, 2014 at 4:12pm:

winner19 wrote on Dec 22nd, 2014 at 6:03am: Mike NZ wrote on Dec 22nd, 2014 at 12:10am: Hi and welcome Have you got a preventive, something like verapamil, lithium or topomax, that will cut down how many CHs you get? Have you got any CH abortives? Something like imitrex injections and oxygen? These can kill off a CH in a few minutes. . I'm taking verapamil and lithium And oxygen I'd ask your doctor about also getting imitrex injections as whilst oxygen is a great abortive, you can't easily take it everywhere, like flying, so having an alternative abortive can make a lot of difference, especially one that can be discretely carried. What dose of verapamil are you on? Whilst most people find 260-480mg a day is enough to be effective, some go to as high as 1000mg to get relief.

Thank you for the information on oxygen I'll go through it
I'm taking 260 mg of verapamil right now
Is imitrex the same as sumatriptan because I'm allergic to it. Not only sumatriptan lots of triptans.

Yes. Imigran and imitrex are brand names of sumatriptan. What a pity you are allergic to it, as it's a life saver for most of us.  Make sure you are using the oxygen correctly to get the best effect, and work with your specialist to find you an alternative treatment. Check out the D3 regime by Batch.

Exercise is a paradox re. Cluster. For some it will help abort a developoiong attacks; for others, the elevated body temp which comes with exercise will trigger an attack.

All you can do is keep a record of your body's reactoin to exercise.
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Your Verap dose is way below the norm for Cluster.

Print the PDF file, below and use it as a tool to discuss optons with any doc you see.

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Bob Johnson wrote on Dec 25^th, 2014 at 11:30am:

Exercise is a paradox re. Cluster. For some it will help abort a developoiong attacks; for others, the elevated body temp which comes with exercise will trigger an attack. All you can do is keep a record of your body's reactoin to exercise. ============== Your Verap dose is way below the norm for Cluster. Print the PDF file, below and use it as a tool to discuss optons with any doc you see.

Ok thanks for your help I'll talk to my doctor. He might be planning to increase the dose slowly.