Although not life-threatening, and certainly not as severe as dementia,I suffer from something called 'Cluster Headaches', which (as a little wikipedia searching will show) are often referred to as 'suicide' headaches for a very good reason.
Having suffered with them for now nearly 10 years, for 5 of those years I was unable to be diagnosed due to lack of specialists and severe lack of research into the condition.
even more depressing was the treatment, of which there is no 'cure' and very little in the way of effective treatment due to lack of effective funding of research, yet it's something I've had for 10 years, and more than likely something I'll have for the next 20-25 years as well, and it's become increasingly common.
When I do have 'attacks' I really do wish for a treatment, as the prospect of literally banging my head against a wall or injecting myself with sumitriptan for temporary relief for a couple of hours to diffuse the pain over a 30+ year period is quite depressing at times, as when attacks happen, they often end up like this poor chap...
uk.youtube.com/watch?v=UzpcPeoPnW0
(Having suffered with them for now nearly 10 years, for 5 of those years I was unable to be diagnosed due to lack of specialists and severe lack of research into the condition.
even more depressing was the treatment, of which there is no 'cure' and very little in the way of effective treatment due to lack of effective funding of research, yet it's something I've had for 10 years, and more than likely something I'll have for the next 20-25 years as well, and it's become increasingly common.
When I do have 'attacks' I really do wish for a treatment, as the prospect of literally banging my head against a wall or injecting myself with sumitriptan for temporary relief for a couple of hours to diffuse the pain over a 30+ year period is quite depressing at times, as when attacks happen, they often end up like this poor chap...
uk.youtube.com/watch?v=UzpcPeoPnW0
The Great Architect is still waiting for his account to be deleted on,
Wed 15 Oct 2008, 16:47,
archived)
it sounds dreadful - and this is my pointit's frustrating to me to think what a significant difference a little money would make towards research into areas like this.
Also - have you been offered oxygen?
www3.interscience.wiley.com/journal/119570329/abstract?CRETRY=1&SRETRY=0
Fifty-two randomly selected patients diagnosed as having either active episodic or chronic cluster headaches were evaluated for symptomatic response to oxygen inhalation. At the onset of attacks, 100% oxygen was administered through a facial mask at a rate of 7 liters per minute, for 15 minutes. Each patient self-treated ten attacks, and timed the rated reduction of pain. A successful treatment result required complete or almost complete reduction of pain in seven of ten attacks, within 15 minutes.In a second (crossover) trial involving an additional 50 patients, sublingual ergotamine tartrate (ErgomarÒ) was compared to oxygen inhalation for symptomatic relief of cluster attacks. Each patient treated ten attacks with either preparation in accordance with the crossover design. Oxygen was administered as described above. Sublingual ergotamine was used every five minutes, to a maximum of three tablets, if necessary.In the first trial 3952 (75%) of patients obtained significant relief from cluster pain. The greatest benefit (92.9%) was found among episodic patients under 50 years of age. The least benefit (57%), was found among chronic patients over 49 years of age. In the second trial, results among oxygen users were better (82%) than those of ergotamine users (70%), but not significantly. Rapidity of relief was similar in both groups.The results of both series indicate that oxygen inhalation is an efficacious symptomatic treatment for cluster attacks. It is superior to ergotamine since there are neither complications nor contraindications to its use. Ergotamine, however, has the advantage of convenience.
(Also - have you been offered oxygen?
www3.interscience.wiley.com/journal/119570329/abstract?CRETRY=1&SRETRY=0
Fifty-two randomly selected patients diagnosed as having either active episodic or chronic cluster headaches were evaluated for symptomatic response to oxygen inhalation. At the onset of attacks, 100% oxygen was administered through a facial mask at a rate of 7 liters per minute, for 15 minutes. Each patient self-treated ten attacks, and timed the rated reduction of pain. A successful treatment result required complete or almost complete reduction of pain in seven of ten attacks, within 15 minutes.In a second (crossover) trial involving an additional 50 patients, sublingual ergotamine tartrate (ErgomarÒ) was compared to oxygen inhalation for symptomatic relief of cluster attacks. Each patient treated ten attacks with either preparation in accordance with the crossover design. Oxygen was administered as described above. Sublingual ergotamine was used every five minutes, to a maximum of three tablets, if necessary.In the first trial 3952 (75%) of patients obtained significant relief from cluster pain. The greatest benefit (92.9%) was found among episodic patients under 50 years of age. The least benefit (57%), was found among chronic patients over 49 years of age. In the second trial, results among oxygen users were better (82%) than those of ergotamine users (70%), but not significantly. Rapidity of relief was similar in both groups.The results of both series indicate that oxygen inhalation is an efficacious symptomatic treatment for cluster attacks. It is superior to ergotamine since there are neither complications nor contraindications to its use. Ergotamine, however, has the advantage of convenience.
Prof UnderCover evitable,
Wed 15 Oct 2008, 16:54,
archived)
Science runs through us...Making us Gods
( Wasp Box like a nervous random stranger at a glory hole,
Wed 15 Oct 2008, 17:06,
archived)
but why at a cost to another causedo you want some giant oversight committee redistributing charitable donations among all charities? You say "I think cancer in general gets too much money and too much attention". You go on to mention "Heart Attacks or Dementia?" as other more worthwhile causes. My perception is that receive an equal amount of attention. The Altzheimer's society and the british heart foundation are both well funded and high profile charities but of course could use more money, as could all charities. And that is what makes your comment seem wrong to me because surely cancer charities also need as much money as they can get. Why in your eyes does cancer not deserve as much attention. My guess is this... you have simply taken exception to the manner in which breast cancer charities in particular raise money.
(
yanmania... last shagged your mum on,
Wed 15 Oct 2008, 17:19,
archived)
not at all - although I take your pointI have no problem with the way in which breast cancer charities make their money -- and perhaps I have expressed myself poorly and put across my opinion too strongly and with too little tact.
I do think that... what do I think...?
okay - for example - I used to fund raise a bit for Marie Curie and we used to get next to nothing compared with a lot of other cancer charities and my feelings at the time were very much that a big part of this was people found the idea of palliative care unpalatable. I have had close relative die with dementia and the care they received and the help available to them, while good when they got it, was criminally short in supply.
I don't begrudge any one charity any money - and I'm certainly not advocating a centrally planned ministry of charities which gives out money according to committee - BUT I do believe that some charities are easier to fund raise for than others, and that there's a finite amount of charitable giving available and that large popular charities do well at the expense of smaller less popular ones... there we go - that's my point - I'm not sure that the large charities (despite often being able to fund raise in large amounts) always offer the best value for money and that other charities who find it more difficult to fund raise may be able to better deploy even a small fraction of their large budgets.
(I do think that... what do I think...?
okay - for example - I used to fund raise a bit for Marie Curie and we used to get next to nothing compared with a lot of other cancer charities and my feelings at the time were very much that a big part of this was people found the idea of palliative care unpalatable. I have had close relative die with dementia and the care they received and the help available to them, while good when they got it, was criminally short in supply.
I don't begrudge any one charity any money - and I'm certainly not advocating a centrally planned ministry of charities which gives out money according to committee - BUT I do believe that some charities are easier to fund raise for than others, and that there's a finite amount of charitable giving available and that large popular charities do well at the expense of smaller less popular ones... there we go - that's my point - I'm not sure that the large charities (despite often being able to fund raise in large amounts) always offer the best value for money and that other charities who find it more difficult to fund raise may be able to better deploy even a small fraction of their large budgets.
Prof UnderCover evitable,
Wed 15 Oct 2008, 17:33,
archived)
if I'm wrong - brilliantI've over-estimated the amounts large charities waste and under-estimated the amount of good they do.
Still though I know a lot of people who work for charities in other areas and they could use money, even tiny bits of money and I just don't see them ever getting as much as they should when the majority of it goes to breast cancer.
(Still though I know a lot of people who work for charities in other areas and they could use money, even tiny bits of money and I just don't see them ever getting as much as they should when the majority of it goes to breast cancer.
Prof UnderCover evitable,
Wed 15 Oct 2008, 17:43,
archived)