Hi Everyone. I have been suffering from cluster headaches for about 5 years now, they only ever lasted 5-6 days an were always at night, and around 9 months apart
Now i am suffering from them in the day time. each day at 10am then again at around 4pm. im up to day 23 of constant headaches. I had to give up my job, i now have a stomach ulcer from so many useless painkillers. i have seen 5 different Dr's been to the emergancy room twice. and no one can help me. i feel as though ive reached the end of the road. I cant face another day of such immense pain.
ive been housebound for around 2 weeks now, and no end in sight. anyone have suggestions, id love to hear them, i will try anything!!! thankyou!

Welcome Tim!

First take the Cluster Quiz (see links on the left hand side of the page) to see if your headaches fit with CH.  Then if they do print out the Cluster Traits and Medical Info pages along with the Oxygen info page.  Take them with you to your Doctor or ER otherwise given your past other "useless" pain medication prescriptions you may be labeled a drug seeker.

Until you get into see the Doctor/headache specialist/neurologist here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.


Make sure you start a headache journal, you can make your own, here's what you will need to note on it.

Day/Date:      
Time of Day of CH hit:   
On pain Scale 1-10 10 being highest what is your pain at?
Duration of Headache:
Symptoms that come with your Headache:
What, if anything you tried to get rid of HA:

You can make up your own HA Journal and if you get more than one in a day use 1 piece of paper/page per day, or you can use MS Excel for this.

Good Luck!

One of the more important recurring problems we have is finding a doc who knows how to deal with complex headache disorders. If you have the option (where do you live?) search for a specialist.
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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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That you have been treated with pain meds is a sure sign you have been seeing docs who lack experience/education in this area.

Without getting a good diagnostic work-up trying this and that will only prolong your distress.

See the PDF file, below. These are the types of treatments which should be used by a good doc.

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You've been given great advice, and if you follow it, you can learn to manage the beast, and work. O2 is, I think, critical to this as well as everything Ginger and Bob said. What have you been using so far? Sometimes a prednisone taper will interrupt a cycle and it seems even most gp's are willing to go there. Talk with us some more. Good luck and God bless. lance

It's not unusual for CH to morph like that. In my late teens when they started, I never got nite time hits, and if I felt one coming on, and could get to sleep, the attack would stop!

My point is, don't ever assume you know how long a cycle will last, or even individual attacks. Work with a competent headache neuro for a firm diagnosis, and then start learning what works for you. What prevent works best for you, Verapamil, Lithium, Topomax, etc.,  the abortives that work best, (starting with the oxygen for sure!!!), and learn your triggers.

Then you'll ALWAYS be ready to do battle with the beast. When you have an arsenal full of weapons to slay the beast, he loses an awful lot of his fear factor.

Clusterbusters.com           visit this site to learn about alternative treatments, outside of mainstream medicine. Showing some pretty impressive reults for our members, especially those for whom traditional meds were not helping.

Welcome, you're not alone anymore.

Joe

Hi Timothy,

Well thank gosh you landed here - sooo many of us who have sought out info and advice here have attained some significant rrelief. I just wish you could've been here 23 days ago!

Good advice you've received so far. Some CH folks , after going over the critically important  oxygen info must read link to the left, just go to the nearest welding supply place to get their O2 without prescription if they're having a difficult time getting one soon enough from a doctor.

If a doctor prescribes imitrex for aborting attacks - try to make sure it is injections, or in a pinch inhaler, but not pill form (many doctors prescribe ineffective pills in their ignorance - a headache specialist wouldn't likely make that mistake though).

Time to get you away from the ineffective pain killers and onto some effective treatments! (And I concur with Joe about the clusterbusters.com option too).