hi everyone I am the wife of a cluster headache sufferer. He has suffered them for nearly 40years, he suffers 2 attacks per year one in the spring and one in the autumn. He has started having absences for the last year and a half and they seem worse when the attacks are due.Does anyone else suffer these absences? we are at our wits end as no medication is working
cheers
Florenceh

Hi Florence - I am also a wife of a sufferer.  The times of remission are wonderful, aren't they?  But yes, my husband also used to have cycles twice a year, spring & fall. Then we got longer breaks. But then we had longer cycles, and sometimes even more difficult ones.

You didn't mention what his treatment plans have been, so I'll rattle a few off and am sure others will follow:

Many here use oxygen to abort a CH - but must be high flow with a non-rebreather mask, and he must hop on the o2 quickly at the onset of one. Most will abort in 5-10 minutes, but continue breathing the o2 for a bit to avoid a rebound CH.

Energy drinks at the onset also seem to help too. In the past many just drank coffee but the higher caffeine drinks seem to be better. Watch the taurine content though, especially if he has any cardiac concerns.

There is a new regimen many are using, involving supplements and most especially vitamin D3.  Look at the thread titled 123 days painfree and counting. If you have trouble finding it let me know. Here's a link to that thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

HOpe this helps. Read read read! And join us down on the "Supporters" board too!

Christy

(Edited to add link)

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Longer remissions plus more severe attacks is not uncommon with CH. I know this is what I've experienced and what I've seen others report.

Sounds like your husband is becoming pretty fed up with the suffering - who wouldn't be? I'm a 30+ year CH'er and I've found some significant relief with the info and advice found right here on this message board, as have countless others

Medications aren't working anymore? That's fairly common too. My opinion: Screw the medications and the doctors, time to move on to non-toxic, but quite possibly MORE effective stuff.  [disclaimer: I would still use partial dose imitrex injections or other meds if the non toxics weren't working for me]

Doctors generally prescribe low flow rebreather O2. So dumb, and not particularly effective. High flow 100% O2 on the other hand is a real game changer .If your husband hasn't tried high flow O2 (I bet he hasn't), he should check it out - here's the link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

IMO he should also immediately go on the vitamin D3 regimen Christy mentioned that several here have reported impressive CH prevention results with.

Clusterbusters.com is where so many long time CH'ers  for whom medications are no longer working end up. They often find impressive relief with this approach and wish they'd known about it  long long ago. For a large percentage of us this can actually be a more effective preventative than any  prescription. Here's a good introductory read on it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi Florence

  Thanks for being a supporter.  It was my wife who found this site for me 2/02 after 13 months mis-diagnosis, tests, non-working meds.  I'm chronic and these folks gave me my life back.

  Read, read, read . . . ask any questions you might have.  There's a wealth of information here for CH sufferers (and supporters) . . . we DO understand his pain.

  Be Safe,   PFDANs

     Richard