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Showing all posts by "gandalf"

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Posted in 30 year survivor and still learning new things about clusters on 12 Jul, 2016 - 6:12 pm

My name is Glen and I am so glad to find an Australian website dedicated to cluster headaches. I would like to share my story and insights into this most horrific disease.
Unlike many people I have a definite opinion of how my headaches started, 30 years ago almost to the month I received a severe concussion to the left temple as a result of an accident with a charging bull in a confined space. The very next day I started to experience some severe one sided headaches, fearing that I had damaged my brain or something I consulted my family doctor who thankfully diagnosed immediately cluster headaches and told me I should look forward to having them for the rest of my life. His prediction while not welcome was correct, 30 years later I am still struggling with the monsters.
Unfortunately not all GP's are familiar with clusters or the variants that exist. It took 10 years or so before a doctor even prescribed Mersyndol Forte as pain relief, Up until then I just coped with taking the usual Panadiene by the packet-full attempting to relieve the pain. Now I realize I may as well have flushed them down the toilet for all the relief they gave. In 2003 I finally saw a neurologist who diagnosed me with a variant of CPH - the same dog just a different breed. He recommended oxygen therapy to me and it was life-changing to finally get some effective relief. I found that most GP's are unfamiliar with treatments for clusters, Find yourself a GP who is up-to-date with treatment options or find a specialist neurologist.
Having researched the treatments available and asking the doctor to prescribe some is the only way I managed to get some satisfactory results. I have found that a treatment that may work one time does not necessarily work the next time. So don't give up hope.
Everyone's situation is different and I have had success with chiropractic treatment on some occasions as well as the more mainstream treatments.
As I get older the headaches are becoming more chronic, My latest bout has been with me for 7 months and getting worse. Currently I am taking Napronox which while providing some relief has not cured them, My next step is to see a pain specialist. I am at the point where intractable headaches 8 -10 times a day is just ruling my life to the point where I can not function, can't work, can't go out for fear of an attack, and wondering whether it's worth continuing to burden my family every day.

I realize that everyone's may be different but my approach to coping is as follows;

Heat packs to side of my neck at the base of the skull,
Oxygen therapy 12-15l/min breathing in deeply and exhaling it out like you are blowing up a balloon, I believe it makes the oxygen transfer more effective in the lungs.
Applying firm pressure to the nerves at the junction of the base of the skull and upper vertebrae which I find helps numb the pain and lessen the duration of attacks.
Painkillers, although these usually take too long to act once a headache has started.
Someone to massage the muscle spasms in the shoulder area that I get.
Also I try to remain semi upright if possible as lying down aggravates the condition and I find the headache abates quicker in most cases.
And last but not least try to relax as impossible as it may be.

I wish everyone the best in their fight with these horrible monsters, It helps me when I'm in pain to remember "there is always someone less fortunate than yourself" and the pain will pass eventually.
After 30 years I prefer to see myself as a survivor rather than a sufferer.

Best of luck with your battle!