Hi everyone!

This is my first post.  Just found this site.  I've been suffering from CH for about 5 years.  Received my first one during my senior year of college. My family has a history of migraine headaches, but I'm first to suffer from CH.  My CH typically occur during June for some reason and last around two weeks.  I'm excited about this site.  It's hard for me to explain to people what I go through.  I have a couple of questions....

Currently seeing a Neurologist.  He proscribed me Midrin I think it is? Didn't find it helpful, but the last time I saw him (2013) he said I could take up to 1200 mg of Avdil if that worked better. So I've been doing that for the past year.  However, I'm currently in one of my clusters and it's been going on for about 4 weeks now (2 weeks longer than normal).  Little worried about my liver with taking so much Advil.  Thinking of trying oxygen out.  I've heard good things about it. 

Anyone comment? Also, is that typical to have your cluster period begin to grow longer and longer?

Hi Matt,
Sorry you had the need to find us, but now you have you'll find all the support you need here. You don't have to try to explain it to us.

My comment on oxygen - GET SOME NOW !!!!. You haven't said where abouts in the world you live (UK here) but mine is prescribed by my doctor.  But, this is important, You must have a flow rate of at least 15 litres per minute (up to 25 is better) and a non- rebreather mask. Get either of those wrong and it won't work. Low flow is no good, nor is a nose canula or the wrong mask. The high flow, pure 02 is a vasoconstrictor - shrinking the dilated blood vessels which are pressing on the trigeminal nerve, back to thier normal size. The non re-breather mask has one way valves which stop ordinary air getting in, so the 02 stays pure.

Ask your neuro for sumatriptan (may be called imigran or imitrex where you are). This is also a vasoconstrictor. It comes in pill form (too slow getting into your system), nasal spray (a little better) and auto injections which are absolutely fantastic and will abort the worst CH in less than 10 minutes. You can only take 2 per day though, so I keep the 02 for use at home, and take the injections with me when I go out. I never leave home without them. Ordinary pain killers will have no effect on CH. Not even morphine, so don't risk your health or waste your time and money on them You must have a vasoconstrictor.

Search these boards for posts by "Batch", about a vitamin D3 regime he has developed. It has been extremely successful for over 80% of folks who try it.

Yes, what you describe about your cycle can be pretty typical. No 2 people the same. No 2 cycles the same. No 2 attacks the same. It can go from long to short, mild to bad and back again, stop for a while and even change sides. Just when you think you know what to expect it will morph. Sadly, the only thing it doesn't do is go away.

You will learn a lot here. Between us we know more about CH than any doctor on earth. Feel free to come back and ask questions, or just to rant if you need to. We know your pain.

Tell us a little more about yourself - location, age, job, family etc. It may help us to help you.

As an aside, for your family - sumatriptan treats migraines too.

Hope this helps. Let us know how you get along.
Best wishes, Maz.

If you think you'll stay around here:
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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You Neuro shows no awareness of how to treat Clusster. This is too common even among Neuros because they received meager education in treating headache.

See the PDF file below. These are the meds which are most commonly used for Cluster.

If you have the option, seek a headache specialist.

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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Please don't get into self-treatment if you intend to seek another doc. Collaboration is essential.

To effectively control Cluster you need three different meds.
1. Usually a steoid used for a few days. It will rapidly stops attacks and is a bridge to the next med which, while working more slowly, builds in your body to give long term
blockage to attacks/at least reduces them.
3. Is an abortive which is used to rapidly kill an attack which may sneak by #2. 

While you are seeking a new doc, read much here. Take at look at these sites, also:


Thre 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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While the advice above is very good, since no one else has said it, I guess I will: your neuro is not treating you for CHs. Advil will not touch a true CH nor abort one, nor will most (any?) pain meds. You shouldn't be wondering if O2 is worth trying. Your neuro should have led you right to it, along with the Imitrex. So in short, you need a new neuro who is actually a headache specialist. Use Bob's info to help in that. blessings. lance

The good news is that if you are in fact experiencing cluster there is a very good chance things are going to get better for you once you start receiving treatment from a neuro who has a handle on this subject.

Advil is the last thing you would want to take for cluster, as it is likely only to upset your stomach on top of being completely useless for the pain.

Newbie here.

After watching my husband go through a brutal 90 min attack I had to act. I begged to get squeezed into the see the doctor the next day, educated the doctor about cluster headaches, and left the office with a prescription for oxygen which was my goal. My poor husband was just fried from the the night before. I had no clue how to get oxygen but I figured it out and got him all the equipment THAT DAY. I just kept telling people it was an emergency and I got what I wanted.

The O2 has really helped my husband cope with the attacks. I hope you try it. Make sure the prescription give a flow rate and type of mask.

Best to you.