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Showing all posts by "Curly"

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Posted in Nose bleed. on 28 Aug, 2016 - 9:49 pm

After 28 years of CH this is the first time that I have had a nose bleed. I suppose my blood pressure goes through the roof during an attack and this might be the cause. Also about two years ago just after one of my worst headaches I noticed that my left eye was blurry so I went to an eye specialist and was diagnosed with a BRVO ( Branch Retinal Vein Occlusion ) which means I have a blood clot in my eye. The eye specialist doesn't seem to think that this was caused by my CH but the timing seems pretty coincidental. He said it was a blood pressure problem. With the pain so intense I think it was the cause. I now have to endure injections in my eye of a drug called Avastin which was developed to combat Bowel Cancer. It tells the body not to produce new blood vessels and therefore restricts the blood flow to the cancers/tumours and restricts their growth. Injected in the eye it stops the eye from bleeding into itself. My eye is getting more stable and I hope to not have these injections soon. I am due for another tomorrow I think this is injection number 20 and I think my eye has deteriorated because of this cluster. I suppose all will be revealed tomorrow as this is my first cluster since the occlusion. Has anyone else had either of these things happen to them?


Posted in The Alcohol Question. on 28 Aug, 2016 - 9:25 am

Do you drink? Yes or No is the question on the profile page when you join this forum. I may only drink alcohol a couple of times a year. It is nice sometimes just to feel normal and do what others may do with no repercussions. So since I do have a drink at Christmas for example and then only two for fear of an episode I must answer the question, yes I do drink. I do not think this makes me a drinker and I think that statistic is flawed. The question is too ambiguous, I believe,and may not give a true indication of sufferers habits. When I see over 70% of sufferers drink I would doubt that many would drink regularly. If you think something is a trigger and you really suffer with cluster headaches you avoid it like the plague for fear of what may follow.
Maybe, Are you a regular drinker or an Occasional drinker may be a better indicator than just Yes or No.


Posted in Just found and joined this forum on 27 Aug, 2016 - 10:29 pm

Hi everyone my sight nickname is Curly as I am as bald as a badger but one of my friends think it is a funny name for me. I am 54 and have been experiencing cluster headaches since I was 26. I was diagnosed approximately 5 years ago which at least let me know what I was suffering from. Since diagnosis the only real help provided to me was the use of oxygen. I now know that I am not a sook and that my pain level is as bad as I thought. I am currently on day 38 of this cycle and am optimistic that it will soon subside. I have only had one day off work in this cycle as I have learnt to cope very well over the years and I would like to keep my job. Fortunately I work in a hospital and have access to oxygen in my workplace and an understanding group of co workers who are aware of my affliction, although higher management are not aware and I prefer to give them no ammo to use against me. My GP correctly diagnosed my condition but other than the oxygen thing has been of little use to me. This is the first time that I have sought information since learning that there was little known about cluster headaches. I just got on with life I am not sure if this site will help but at least there are other people who know what I am going through and maybe I can help others as i have 28 years of experience in this area. Happily as I have aged the frequency of attacks has been longer between episodes so I am hopeful that trend continues.