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Title: "Hello fellow Clusterheads"--said the newbie Post by sithlord on Feb 21st, 2002, 2:45am Hello, Well after Years of being an episodic cluster sufferer, (which of course, none of the doctors could diagnose) I have finally been diagnosed. Nobody ever seems to understand that when I have a headache, it's not just a headache. Sure I get normal ones just like everyone else, but when a cluster comes on you can feel it coming. Unlike many of the posts I have read on this site, my headaches tend to come at about 2 in the afternoon. I don't know what's worse: waking up with one or already beeing awaken and feeling them coming. I would imagine that the answer would be the earlier of the two. For years I called them MIGRAINES and didn't know any the wiser. My mother used to get what she called "Eye-Aches", and described them as intense pain she got around her one eye. When I went to the doctor they told me that it was very uncommon for men to have real migraines. And so I said well than what do I have? I felt humiliated, in-validated, belittled. The doctors looked at me like: it's just a headache, grow up, be a man, take some tylenol and get over it." IMAGINE,...TYLENOL!!! My simptoms are * of course the pain * Numbness in both my hands * I loose part of my vision * Dizziness * Nausiea * and residual headaches After I finally got a doctor to believe that I had "Migraines" he put me on midrin. When that failed to work, they put me on imitrex, but the side effects of the nausiea were so bad that about after ten minutes, I would vommit the pill back up, almost still whole. God it's good to vent. Sorry this is so long. I'm now a 25 year old man, I have a wife, we're thinking about kids. I work in a factory. (the only place I could find work after dropping out of college partly because of clusters.) I was on the verge of being fired for missing to many days due to what: Clusters. These things, this beast has been eating me alive so long that my life has had many disappointments directly related to headaches. Have any of you found that these things can be brought on buy bright light. I now live in fear of driving at night, Lamps without shades, and most of all the dreaded 35mm camera flash. I have so much more to say, but I must get some sleep. God bless you all for being hear and listening. (and I'm not even a religious person!!) sithlord |
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Title: Re: "Hello fellow Clusterheads"--said the newbie Post by Melissa on Feb 21st, 2002, 7:04am Quote:
Real bright light DOES bother me when I'm in cycle too. But I do need lights turned on in the house, when I'm having an attack. When it's completely dark, my pain seems to worsen. So sorry to hear you get them everyday, chronic clusters are the worst! Quote:
Have you tried the imitrex injections? Many have gotten relief a lot faster, than with the pills. Hope you can get some much needed pain free time. I just wanted to say "welcome" to our family, and i'm sorry you have to deal with this pain. We're here for you! melissa |
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Title: Re: "Hello fellow Clusterheads"--said the newbie Post by SeaBiscuit on Feb 21st, 2002, 8:21am For years I was dignosed with Migraines too. I am Chronic, 2 years now with a 2 day break if I am that lucky. I use the Imitrex Injections and they work much faster than the pills. I get attacks 2-3 times a day durning the day and then again usually around 2am to 3am. Lights don't bother me but noise does. I homeschool my kids and when they see "that look" on my face they know whats coming. They have wanted to slap Dr's that acted like I had just a regular ole headache that tylenol would take care of.....lol.... This site has been a god send to me and my family! Mona |
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Title: Re: "Hello fellow Clusterheads"--said the newbie Post by wip5150 on Feb 21st, 2002, 9:25am Greetings all. I am not really a newbie as I have been coming here for quite a while - I just forget my password. The bottom line is that these headaches suck. But we have to find a way to MANAGE them as we all know there is no cure. I am 32 and have had approx. one cycle (lasting 6-8 weeks) per year since I was a young boy of 17. The headaches ALWAYS come 45 minutes after I go to sleep (and sometimes durinig the day) and last from 30 minutes to 3 hours. The pain peaks at 10 several times during the cycle, but I have a long buildup to the peak. Over the years, I know what to avoid when a cycle is coming on (alcohol, red meat, second-hand cigarette smoke). But, since there is no "normal" sufferer for Clusters, it's kind of a trial and error process. Unfortunately, the same goes for treatment (if you can call it that). I find that VERY hot showers directly on the side of my head coupled with deep breathing can work sometimes. I first used Imitrex nasal 20mg about 5 years ago and works 70% of the time - however I can't use them right now as I am about to "donate" my sperm for an IVF cycle next week and the doctor said Imitrex might kill off my boys. So, until next week it's scalding hot showers for me. This site is helpful if only to let you know that you are not alone. However, if you read enough profiles and posts, you will see that very few of us have the "same" symptoms. Try as we might not to let these pains rule our life, sometimes it is avoidable. I can't tell you how many times I have left work for the day thinking, "I can't bear this anymore" only to have the headache leave 20 minutes later and feeling very stupid. Again, it's about managing your life within the context of cluster headaches. I guess I really don't have a point here other than I obviously have time to write the above. Wishing everyone the best, Bill TEXTCluster Headaches SUCK! |
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Title: Re: "Hello fellow Clusterheads"--said the newbie Post by vangogh71 on Feb 21st, 2002, 9:36am Hello Sithlord, I can understand where you are coming from, though I have been extremely lucky in that my doctor was able to diagnose me quickly and that my employer has outstanding benefits that allow me time off during a cycle. I have been a sufferer from 1999, and this is my 4th cycle. I am lucky that I can go about 6-8 months of PFDs (but I am one male that does get migraines so you know it may be uncommon but not IMPOSSIBLE). Have you tried the Imitrex nasal spray or oxygen to help manage your pain? Good luck in dealing with these demons and always remember when a cluster ends and you are still standing that it is a victory. Cory |
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Title: Re: "Hello fellow Clusterheads"--said the newbie Post by murphysmom on Feb 21st, 2002, 9:41am Hello my Brother in Pain. I too have felt the looks of people saying "Buck it up and take an aspirin, it's only a headache" Screw them!! And as our fellow sufferers have so eloquenly stated nobody is the same we all have to learn to deal with this in our own way. I pray for you to find YOUR way. Try to find a Doc that will listen and try the homeopathic things that you can. I have found being a vegetarian helps, avoiding dairy, I quit smoking cigarettes, and quit drinking alcohol....but everyone's different. My headaches shadow me around all day at 3 or 4 then pound my ass at night with a 8 or 9...so Good Luck on your journey and I'm praying for apin free days for you. mmom |
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Title: Re: "Hello fellow Clusterheads"--said the newbie Post by nancyc on Feb 21st, 2002, 4:32pm I sure would like to tell some folks what to do with their tylenol, bro...welcome to ch.com...sorry for your pain. First of all, let me advise you to file a Family Medical Leave Act at work to cover you with absentees and any medical leave because of chs...Second, get a Doc that has a heart...know sometimes those seem hard to find but dont give up trying. As far as bright lites, they only bother me when i am having an attack...God bless, and keep coming back..we are here for you. smiles,nancyc |
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