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Dancer58's profile

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Location: Perth 
DOB: Friday, 28th February, 1958
Site: Not Entered
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Status: Currently suffering :(
Joined:  12th April, 2015
Posts: 0
Electrician by trade, do project & maintenance planning now. (Currently not working)
Suffered from migraines all my life.
First cluster in 1985 & diagnosed in 1993.! Took a while..

Suffered periodic attacks in the beginning, occasionally lasting many months. Most attacks last on average 42-50 days twice a year, with at times up to 6 or more clusters a night & coming on as soon as the last one finishes (40 min). My attacks are moderate in first 2 weeks, serious for 2 weeks then very bad in remaining period. They taper very quickly & by then I am a mess.!
I know I am in a bout when I drink & a headache starts generally within the hour, at times starting in REM sleep cycle with no obvious triggers.

Migraines 2-4 times/month.with lots of aura. Pain lasting up to 30 or so hrs.

Clusters have become more chronic over last 3-5 years. These attacks have left me totally devastated at times & have struggled when the pain gets near 10. Of late I have been diagnosed with sleep apnoea & using CPAP. this has had the unusual effect of significantly reducing REM cluster attacks. (Oxygen/carbon dioxide..??)
Have tried most if not all remedies over the years with a modicum of success.Initially I was prescribed lots of pain killers with codeine which produced evil rebound headaches & probably caused a lot of unnecessary pain over the years, but thankfully stay clear of it now & have benefited from this.
I have found that I am quite phonophobic (sensitive to load sounds) & sensitive to light during attacks. Such fun!!.
I have also noticed that pressing any area around my temples & carotid areas produces a significant increase in pain, so have learnt to be careful when using cold/warm compresses. Sometimes I use these as a means of distracting myself.?.

Immigran (oral+inject)t & prednisone are first options, but I have some tricks I bring to bear when attacks first strike .Speed is of the essence when dealing with these CH's..

I now have a diary that dates back nearly 30 years & it is interesting to see the changes in the condition over the years. Too long to go into here but my attacks are generally triggered at set times of the year, generally autumn & spring & can last many months with intermittent attacks lasting a week then going away for a few. Food does not trigger my attacks.
Alcohol is not by itself a trigger, but does exacerbate the CH when a bout begins & should be reduced or avoided.I have to be careful not to take the meds too soon as I build a resistance to them very quickly, then its downhill or 'wipe out' on serious pain killers (as last resort)..

Exercise can be beneficial & therein lies some respite..

My approach over all of this is to lead as normal a life as possible & to be positive that you will see it thru. I have sometimes wondered how I was able to maintain a full working life which required FIFO & 12 hr days.

I have learnt to be as discreet as possible so as not to bring attention to my condition. Only certain family members have watched the pantomime that clusters produces. It is demeaning & can cause people much distress.!
I have an understanding wife & over the years has looked after me when in the 'pit of despair"; for that I am eternally grateful..

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