I have been dealing with cluster headaches for 5 years (diagnosed) and at least another 5 years before that.

So far I was prescribed oxygen many times but I kept looking elsewhere because of my job keeps me on the go all the time. I recently found out they have a portable solution so I'm fighting with my insurance to approve it.

I was also prescribed the nasal spray (Zolmitripan 5mg) and can't say it has ever worked.

I have used Needle-Free Sumatriptan Injection
which worked but made me feel like my hearts was racing so it scared me. I stopped using it.

I have heard about many things on this board as well as online I'm just lost as to where to begin. Energy drink I'm curious about even though coffee once scared me, made me think it triggered to headache. I'm also beginning to think lack of sleep contributes but not sure. I also read about Capsaicin cream, anyone tried it?

I took 21 day prednisone regimen in December which helped. Then I took 2 pretty much back to back regiments of another steroid in January which has helped but as soon as I stop steroids cycle returned. Today I begged my doctor and he started me back on a 40 day prednisone regiment.

Every other year steroids cut short the cycle but this cycles is fighting me bad.

I would love any direction.

THANK YOU! and SO HAPPY TO FIND THIS PLACE

Information is what we offer, because knowledge is power.

Welcome home.

Welcome to the board. We're danged glad you found us!

First and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


So all that follows will be worthless I hope……….but still…

You have not mentioned a prevent med, a med you take daily, while on cycle, to reduce the number and intensity of your attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief. The fact your doc hasn't tried a prevent concerns me, it speaks to a lack of expertise in CH.

The prednisone tape is a great  transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. As you've seen, prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. Multiple tapers is asking for some health issues.

You already know oxygen works great as an abortive, but check this link out to make sure you're getting the maximum benefit from it:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Your doc doesn't know how to treat Cluster. Jumping from one med to another will not lead to stable control.
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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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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.

Thank you Thank you Thank you!

Hi and welcome

For oxygen read up about how we use it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Even with your job keeping you on the go, it is still a great way to kill CHs even if you just keep it at home for overnight hits.

When in cycle I use a small cylinder that fits in a backback, along with my regulator, mask and Red Bull that I take with me, be it on a social trip or to work, so if I get a hit I can jump on the oxygen in minutes. You just get used to looking out for places where you can use it, be it an empty office or a stairwell.

There is a very interesting interaction between caffeine and headaches. For CH it is not regarded as being a trigger, although for other headache types, like migraine, it is a very common trigger. But then when the headache starts it can work to help alleviate the symptoms. So do give it a go, just pick an energy drink with both taurine and caffeine, then drink it rapidly as soon as a CH starts. It should help minimise the intensity and duration.

There are capsaicin creams that people do sometimes promote. People have posted here about having tried them but there have not been many favourable reports.

Be very careful about long term use of steroids, especially the 40 day duration one you mentioned. Steroids are pretty harsh to your body, especially to joints. For CH a normal prednisione dose is a taper dose starting about 80mg and dropping off over about 10 days. This is used for when a longer term preventive, like verapamil or lithium, is started to work as a preventive whilst the longer term one builds up to an effective dose.

Keep reading and you'll learn more, then ask all the questions you can think of.