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Private Message added 2007-01-04 |
| Date | 2006-09-22 |
| 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 | 2006-07-16 |
| 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 2006-06-19 |
| Date | 2006-06-11 |
| Location | |
| Message | Broken cycle at 2 1/2 weeks? 24HRS and lots of good sleep CLARITIN-D24HR IN AM 6MG of MELATONIN at 9:00PM 500MG of MAGNESIUM at 9:00pm will update in next 24hr SILVERDAVE  |
| Date | 2006-04-28 |
| Location |  |
| Message | please visit ************ for words that will make you think... its still new so you can bookmark it and come back later!!
****Please do not use the Guestbook for this sort of thing. I '**' out the web address but left the rest of the message intact. If you would like a link on my blog please email me and I will set it up. Especially if is related to cluster headaches, migraines, tension headaches, and all types of chronic or episiodic pain related disorders. I would be more than happy to add a link on the main page. The more awareness we create the better the chance a cure may be found.**** Paul |
| Date | 2005-10-13 |
| Location | |
| Message | Well, I just had my first phantom pain today while sitting here at work so I went searching the web for Cluster sites and came across this one. I've suffered CH's for 14 years now, of the acute variety. I can't imagine what you must be going through with the chronic variety. Maybe I can give you another avenue to explore. There certainly has been a lot of web activity since my last bout last fall but I see nothing out there that mentions what cured my last bout. Marijuana. Not only did it abort the cycle after two administrations but instantaneously stopped the pain. I could still feel the phantom pressure but there was zero pain. I believe it was from the sativa strain judging from the high but I'm not sure. All I know is it was like a new lease on life. I know what I'll be doing during the next attack onset. I'll post back when I find out if it works a second time. |
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