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| Date | 2007-03-19 |
| Location |  |
| Message | Sorry to hear you're having so much trouble with this. I have cluster headaches although they were misdiagnosed for over twenty years!! At their worst I had eight, two-hour headaches per day for two months, basically round the clock. Usually I would have one or two, two-month attacks, per year with the problem starting when I was 23. During this time I had no pain control at all even though the headaches would often render me unconcious. Ultimately I met someone with cluster headaches who recognised what I was suffering from and thereafter I was able to control the pain using Imigran as either a tablet or nasal spray. I was also able to abort a sequence of headaches by travelling to the tropics and being based in the UK would travel to the sun for the winter. This seemed to prevent attacks and also give some protection against future attacks. Seemingly the sun manufactures vitamin D3 when irradiating your skin and this is a precursor for the missing nerve transmitters that lead to the condition. As you say your condition is very circadian, or cyclical. I also feel that not wearing sunglasses also allows your system to lock onto the natural cycles more effectively. Since moving to Spain three years ago I have only had a single six week episode, again triggered by some unusually dull weather in the winter here. If you can't get into the sun you can try being outside during the middle of the day to try to mitigate the worst of the dull weather. Gray |
| Date | 2007-01-31 |
| Location |  |
| Message | Episodic since '82, diagnosed in '96, oxygen-user since '05. PF |
| Date | 2007-01-10 |
| Message | Hi everyone, so happy to have found i am not alone with the cluster headaches, let's hope that soon there will be a cure for this awful condition. No one understands this pain only us the sufferers take care everyone chrissy |
Private Message added 2007-01-05 |
| Date | 2006-09-23 |
| Location |  |
| Message | Hello Danny, Sorry to hear that you are us unfortunate chronics. Surgery is an idea I've battled with as well. However, at this point I am not ready to take the risk. I haven't tried Radio Frequency Lesioning nor am I likely to in the near future. The stats I found were that is was about 50% effective, 20% fair-good & 30% fail. Not the most promising odds I'd have to say. Surgery for clusters can have some very serious issues and the worst part is the clusters may be made worse. The Michigan Head Pain & Neuro Institute http://www.mhni.com/clusterheadaches.html has a list of various surgical methods for cluster headaches like Gamma-Knife radiosugery, Glycerol trigeminal rhizotomy, Microvascular decompression as well as several others. One I wouldn't mind giving a shot would be Deep brain / hypothalamic stimulation but that doesn't look like it will be coming to market anytime soon. I hope this help. Don't hesitate to email me directly. Hope you get to enjoy a day or two without our little companion. Paul |
| Date | 2006-09-19 |
| Location |  |
| Message | Im 37. Started at 18.episodic. I have become chronic. 5 yrs now without much of a break. Tried all the meds at 1 time or another. A steady dose of Imitrex inj keeps me from disconnecting my brain. Lots of pain meds too. I am now being advised to try Radio Frequency Lesioning. All research that I have done on it scares me. Also, from what I have read there is only about a 20% rate of SOME improvement for CHRONICS. Ever tried it?? Any thoughts?? |
| Date | 2006-07-20 |
| Location |  |
| Message | just been 10 months pain free,first time in 12 years since clusters started,so i had every right to think they had gone forever,but no chance, they came back 4 weeks ago and have now gone again,lets hope i get another 10 months without them .  I hope all of you who suffer get some relief at some time .oh and i never did anything spcecial to get 10 months pain free, all i know is that leading up to the 10 months pain free period was the worst time for the amount of clusters i was getting, and then ,bang they just stopped.Ray. |
| Date | 2006-07-17 |
| Location | |
| Message | Hey. Man Your post describes things right on. It is nice to know im not alone when I read these. Im 16 by the way and I have been through countless therapies and doctor visits. I dont know what to say just stay strong and remember they do go away eventually sleep will come and your not alone nor will you ever be. Good Luck Barak |
| Date | 2006-06-23 |
| Location | |
| Message | Hello, I've read your blog looking for symptoms and actual accounts of what a cluster headache is. I recently started having some kind of headache and although not as violent as the clusterheads video sample, they are pretty deliberating, with tearing from my left eye. Thanks for sharing your experience I think it helped me determine what I'm possibly experiencing. I'm sorry and pray for a answer and cure for suffers like your(my)self.  |
Private Message added 2006-06-20 |
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