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Hello, Very nice to find such a large amount of condensed information and many things I need to talk to my doctor about (strategies yet untried) but I was referred to this board by Bryce after he read my artical here: http://www.stuff.co.nz/stuff-nation/assignments/share-your-news-and-views/15312259/I-am-sick-not-unemployableabout the struggles of trying to from employment while Suffering from CH. I was diagnosed with CH 14 years ago after suffering from "headaches" since I was 6 yo's, later when I was 10 the diagnosis was upgraded to migraines but the cycles confused doctor's, CH wasn't a known condition in NZ 24 years ago and was later re-diagnosed as a CH sufferer when I was 20. My CH induces blindness as an effect due to pressure on the optic nerve as well as the usual effects. I have tried everything under the sun, available in NZ and now manageable CH for this cycle of 1 bad attack per week using dietary changes and light wavelength blocking (Orange glasses work for me) stress management through meditation (unknown if this is related but helps with depressions as a side effects of inability to find employment) and fitness, again may be unrelated but helps in other ways. I do have a question though and this may have been covered before inside s topic which I haven't had a chance to read through everything yet, Do you guys notice an increasing tolerance for pain, this cycle has lasted so far 8 years (3 per week for first 4 years, down to 1 per week on avg) I guess with the pain level CH induces tolerance is expect but I can accidently cut myself now and not notice, also I have a hobby as a medieval recreationalist in which we fight full contact in armour with Rattan (a very hard bamboo, unarmoured strikes would cause trauma, broken bones on joints) my pain tolerance has risen significantly this last cycle to the point that a hard blow is not felt and I need to rely on the vibration of the armour to indicate impact, I am worried that if this trend continues I will be able to break bones and not feel it. NZ is a weird place for CH, Oxygen is a mostly unknown treatment of all the times I have been hospitalised I can say Oxygen was only administered once which was recently (end 2015?) mostly I am pumped full of morphine so will be discussing with my doctor the treatments I have found here and showing her the research. I am very glad this forum exists, I read recently that Isolation is a symptom of CH now as the pain encourages us to withdraw from society, it's good to know we are not alone. PS, I have found that A stronger Ginger drink helps a lot as a attack triggers, if anyone is interested I can add my recipe for Alcoholic malted ginger (brewed) it works really well for anti nausea as well allowing you to avoid over the counter drugs that reacts with other drugs and far more palatable and more effective that ginger tea's (I have found, may not work for other, but works for me) think ginger beer on steroids its very strong.

Hey Toni I am in dunedin but I know Tauranga well, As for O2 I am very lucky in this regard as we have a local BoC supplier (I am sure you do too) who provides O2 for OxYacetylene welding not med grade but is clean and pure, OxyA kits are cheap(ish) don't require special permits here (you can even get the tiny portable kits from Mitre 10 (if they stock them), I have a small Kit I use when welding and cutting for making armour, it's actually easier for us then other countries, I never thought of trying it for CH, but have rigged a mask from a respirator this morning to try for my next attack. for me support in NZ has been a long, long road so many people here think CH is just a bad headache that some panadol or nurofen + codeine (in dire times) will fix and they go pale when you tell them you are put onto IV morphine.. I have been misdiagnosed until I was 20 as CH was not known very well in the NZ medical system and is still badly treated, back in the day there were no approved treatments but nowadays you not treated as a lab rat anymore. The biggest issue i've had is employers now wanting to hire you and CH is very misunderstood in NZ, they dont realise its controllable once you find the right combination of meds and treatment or at least can be alleviated or delayed.

Hi there, I joined this forum a couple of days ago looking for support to help with my 10 year old sons headaches. We are in NZ also (Tauranga, where are you?), so am interested to hear how you have found getting a diagnosis and support here. I learned from trying to get help for his autism that sometimes you have to go kicking down doors until someone eventually listens and believes you! I suspect I will need to go the same route with his headaches also.... It is so tiring fighting to get help form the people who are supposed to be helping you. Anyway, I read an article somewhere online about a NZer who was able to get oxygen for his CH, do a search on google for something like 'getting oxygen for CH in NZ'. He described how he went about it and where he eventually got the oxygen. It seems this may be the best option for us also, but I need to get advice on using oxygen for a child first, and talk to the pediatric neurologist about the situation. So, welcome! And I will be interested to hear more about your experiences getting support here in NZ. Toni

Just a quick note, Bthr22 -- Cigarette smoking is not a CH trigger, at least not for 95% of people with CH. Some people with CH seem to get triggered by some kinds of smoke, but cigarette smoking is almost never a trigger. Like oxygen, nicotine is vasoconstricting, whereas alcohol, a very common trigger, is generally vasodilating (for most people, most of the time).