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Title: New member.... Post by Barto on Mar 6th, 2006, 3:11pm Hi everyone!! Not sure if this is the right place for me or not, but I'll give you a rundown anyhow. I have been recently diagnosed with cluster headaches by my family dr (after extensive testing, MRI's, etc). I'm not convinced that I have cluster headaches after reading the traits of CH. I have charted my headaches for the past 16 months and this is how they occur. Time of day, environment and season have no affect on my headaches. My headaches begin as a piercing pain approx. 3 inches above my left eye, followed immediately by the overwhelming smell of cigarette smoke. My left eye becomes blood-shot 7 to 8 minutes later. The left side of my head "tingles" and droops 3 minutes after that. Within 22 minutes of the initial pain above my eye, I am in a full blown headache (a level eight). It will stay at that level for 45 minutes to 75 minutes (mean avg of 56 minutes). The pain will subside to a level 5 and will stay there for the duration of the headache (lasting from 2.25 hours to as long as 126 hours, mean avg of 15.25 hours). While having the headache, I will sometimes run a low-grade fever (up to 100.5) and I have no appetite. I am not sensitive to light or sound. The smoke smell will not subside until the headache is completely gone. The frequency of my headaches is 6.4 days (avg). Do I have CH? Am I in the right place for help? Barto |
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Title: Re: New member.... Post by marlinsfan on Mar 6th, 2006, 3:15pm Hi Barto, Boy, those are impressive numbers! Nobody here will tell you if you have CH or not, as we are not docs. I'll suggest you see a neuro to get an expert opinion. Pain sucks, whether it's CH or not. You are in the right place in that there are a few here (mainly E-Double and others) who know a lot about all different kinds of headaches. I'm sure one of them will come along soon and give you their take. In the meantime, read a lot. Take the cluster quiz ont he left, tell us what meds you take and how you battle your headaches. Also read this, it has good info on meds: http://www.brightok.net/~mnjday/chtherapy.pdf Welcome and PF (pain free) wishes. Jose |
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Title: Re: New member.... Post by marlinsfan on Mar 6th, 2006, 3:17pm By the way, I see you're in Melbourne. I'm just down I-95 in Hollywood, and I have a good neuro here. If you can't find one up there, let me know. |
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Title: Re: New member.... Post by Barto on Mar 6th, 2006, 3:25pm Oops!! Guess I should have put that in my first post. :-[ I did see a nuero and he conferred with my family dr. They are in agreement about me having CH. I have been prescribed Imitrex for my headaches. Let me just say, Imitrex does not help. The one thing that helps take the edge off for me is a very hot shower on my head and neck. Barto |
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Title: Re: New member.... Post by marlinsfan on Mar 6th, 2006, 3:38pm Imitrex shots, nasal spray or pills? Imitrex works well for us clusterheads as well as for migraines and other types of headaches. Did you get a prespcription for Oxygen? Used with a non-rebreather mask and a high-flow regulator (10+ liters/minute) it's very effective at aborting attacks. |
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Title: Re: New member.... Post by mynm156 on Mar 11th, 2006, 1:42pm Hey Welcome aboard!, I am sorry that you are one of us but I am glad that you found us! Look around read there are some that spew more than thier share of $@&* but all in all it is just nice to know that you are never alone in this. I went too many years not knowing living with noone understanding that this was no mear headache. Then this site saved my sanity! I say get to the Neuro and try some O2. It helps sooooooo many of us! Your Brother in Pain MYNM156 |
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Title: Welcome Barto! Post by Richr8 on Mar 11th, 2006, 2:05pm Sounds like CH to me. I'm glad tht you found thi splace. It can be a life saver through difficult times. It looks like you have much reading to do with all of the tips and links provided although no one has reported any universal miracle cures, maybe one of the newer regimens will work for you. Despite the health risks associated with it, Prednisone tapers have reduced my cycles to several weeks from 12 weeks. I use O2 as an abortive and Verapamil as a preventive with 6mg of Melatonin to help with the sleeplessness brought on by the beast and the Prednisone. Anyway, dig in, start reading and ask all the questions you want. There are lots of great folks here who know exactly what you are going through and will help in any way they can. |
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Title: Re: New member.... Post by Kris_in_SJ on Mar 11th, 2006, 8:06pm Welcome - so sorry you're suffering right now. The fact that your family doc and a neuro concur on a cluster diagnosis is pretty significant. Trex doesn't work for everyone, just like other cluster abortives don't work for everyone. The totally weird and frustrating thing about this syndrome is that we're all so different - except for the extreme pain, that is. Follow the link that Marlinsfan gave you. There are alternative abortives besides Trex (like Oxygen), and you should be on a preventative med like Verapamil. Cluster headaches require a "polymed" approach - that means more than one type of medication. I must admit - the cigarette smell thing has me stumped! The only cigarette smoke I smell is from the one I light up as soon as an attack is over! Read, read, read all you can. And ask all the questions you need to. We're not docs, but we certainly know alot about this horrible condition. Hugs, Kris |
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Title: Re: New member.... Post by thebbz on Mar 12th, 2006, 1:53pm Hello There are many websites describing different HA. Rappaport has a book entitled Conquering Headache. It has some of the answers you seek I think, covers many different types of HA. It also is not unusual to have a combination of different HA with clusters. The more about your HA you know the better. Put the cigs out and the smoke smell goes away [smiley=laugh.gif] [smiley=laugh.gif] My sniffer is super sensitive when in a cluster. Hope you doing better and sorry your getting the visit. jb Ditto Marlinsfan good stuff. How did you do on the cluster quiz? |
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Title: Re: New member.... Post by Barto on Mar 13th, 2006, 11:35am Thank you all for the different advice. I have been reading up since I found this site, which is why I was skeptical about having CH. As far as the cluster quiz goes, here are my responses: 1 no 2 yes 3 no 4 no 5 no 6 no 7 no 8 no 9 yes 10 yes 11 no 12 yes 13 yes 14 yes 15 yes 16 yes I guess my doc was right :( After reading up on the Kudzu, I'm tempted to give it a try. |
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