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| Date | 2007-07-31 |
| Location |  |
| Message | About 5 weeks ago I took a nap after getting of of work and I woke up with a terrible left eye ache and a head ache out of this world. My fear of a reacurrance of my cluster headaches became a reality. From that day on I have had from 4 to 20 head aches a day. The worst is in the evening and at night. I had had these head aches for the last 10years or so. I am fifty now. In the beganning it was so bad that i would ofter go where I could get a doctor to help. at times the doctor would come to me an administer a shot to releave the pain. Im not sure if I have gotton used to the pain or I just go insane with it. |
| Date | 2007-07-05 |
| Message | hey.......i appreciated your info... got a new friend with chs and ya i know this insight will help. thanks |
| Date | 2007-05-28 |
| Location |  |
| Message | Paul I'm so sorry to hear about your cluster head aches and the double biopsy  I too have been suffering with chronic pain since October 2001... I fell on one step and ended up dislocating my shoulder, broke my arm, caused axillary nerve damage from the break...and after all that I found out that I also blocked the blood flow to my humeral head...it collapsed in 2006...I had the ball replaced in my shoulder nov 2006...now I find out that when I lift my arm I have no circulation in my arm and the ligament that holds the tendon that runs over my shoulder into my arm is broken or stretched and the tendon is rolling...so more surgeries...I have had no relief from pain since I fell and the surgery was a nightmare to say the least...I found while reading your blogs that I got a bit of strength back to not give up and keep going until I am fixed...thank you for your thoughts  |
Private Message added 2007-03-20 |
| 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 2007-01-04 |
| 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?? |
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