Hi Everyone,

Hope everyone is having a great day. I am having my second episode with cluster headaches and will appreciate any prayers & advice you care to share.

My first cluster was 8 years ago (a few weeks after my 21st bday). I went to the doctor (8/14/07) after about 2 weeks of suffering and was told that it may be clusters or migraines. I was given a shot of tordal and I really don't remember how long they lasted after that.

This second round could not come at a worse time - my wife is currently 35 weeks pregnant with our first child and I feel worthless. I'm not sure if it is a coincidence or a possible trigger: I went to a podiatrist (8/5/15) for foot pain and was told I had tendentious and was given piroxicam, after taking the medication for about a week the headaches started (1 of the top side effects of this med is headaches). I stopped taking the piroxicam and the headaches continued to get worse. Last Monday (8/17/15) was the worst so far - ended up going to the ER hoping a neurologist would be on call and I could skip the current 1 month wait - no luck the ER was crazy that night (stayed for 2 hrs and no one was taken back = gave up). Ended up seeing my family doc (8/18/15) he told me all of my symptoms point to clusters and started suggesting treatment. I told my doc I prefer to not be on medication and asked if we could try oxygen. After the appointment I thought it might have been a waste - did not have a severe attack until last night. I ended up having 3 headaches in 1 night - that's never happened before, my guess is that I did not do the oxygen therapy correctly (maybe: started too early, ended too soon?). The oxygen did work very well and gave me relief. Any suggestions on proper oxygen treatment? Do others have clusters that follow a consistent schedule? Is it possible I will only have attacks every 8 years?

Thank you for reading.
-Tom

I use the hyperventilation technique described by Batch in this thread: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

It works very well for me.

My headaches are usually pretty predictable: ~8pm, 1~10pm, ~2pm, but sometimes they vary pretty widely.  The episodes so far have hit around the solstices with one that hit around the equinox.

It does sound like you are having shadows too.  A cup of coffee will usually knock those down for me.  And if they are the worst, you haven't had a K10...

Everyone is a bit different however.  And it can change over time.

I have had some severe attacks - not sure what constitutes a k10. My most painful headaches are 5-7pm & 12-2am. The dull nagging headaches (that seem to last all day) drain me and are very distracting at work.

Can you point me to some info on the batch d3 regimen?

I have not drank caffeine on a regular basis in 12+ years so I'm not sure if that will help or hurt at this point.

Thank you all for the replies.

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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I understand that you have not received a good medical work-up from a skilled doc to establish that you do, in fact, have Cluster.

This is the essential first step for there are many disorders which mimic Cluster but which are not headache disorders.

ERs are the worst place to get a good Dx; most of the GPs we see have meager training re. complex headache dissorders.

So, fishing around here to find a treatment is premature.

If it's Cluster, you'll be living with it for many years and so it's wise to, if at all possible, find a headache specialist both for a good Dx and long term treatment.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
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Your desire to avoid medications/drugs is a barrier to using the most effective treatments we have. The issue is learning how to use meds in an intelligent, controlled way.

Oxygen, for example, is effective in aborting an attack. BUT is has a short effective time. What we want is a med which prevents attacks used along with a med which aborts, quicklyl, attacks which sneak thru. See the PD fle, below, for some basic info.

Bottom line: know what you are dealing with before you start making decisions about what treatment you are willing to use.  Diagnosis before Rx.

I started the d3 regimen yesterday morning - no shadows but I did have a bad headache wake me last night around 1am. I am very hopeful that it will take a few days for the vitamins to take full effect.

My wife is having a boy. We are very excited - he is going to be here before we know it!! Hope I don't pass this on to him.

Tomo...
Do what Batch says.. and get some Melatonin and take it before bedtime. (it might take a little white to get in your system so don't give up if it doesn't work the first night). But it gets you thru the REM sleep where the night time CH hits. Took me about two weeks for it to start working, but except for a few "break-thru headaches" it's worked to get me thru most nights..

One little thing ... when you wake up - GET UP -- do not lay there and try to go back to sleep.. I've found out that any time I do that - that's when Mr. D. comes visiting.. The minute my eyes come open - I'm UP and heading for the coffee pot.

And boys are good (mine is almost 47 going on about 6). But he did give me two precious grandsons.. The happiest day in your life is when that baby is born..