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Title: Another newbie comes aboard Post by ShaneM on Jun 21st, 2006, 9:41pm Hi My name is Shane. I'm 37 and as far as I know I have been dealing with CH since I was 17 years old. I thought they were sinus HAs way back because they would just come and go. I didn' get dianosed until I was 25. I was truely episodic at that point. These days I am not so sure. I still think I lean toward Epi and my Doc thinks I am starting to transition to Chronic. Luckily, I have been able to deal realitively well. Of course I go through stages every once in a while where I am pretty hard on myself. But for the most part I let them come and go. When they (docs) were first trying to diagnose me I used cafrogot, advil, pretty much whatever I could get my hands on for pain. Once I knew it was CH the chemicals started flying at me faster than I could take them. I swear I have taken a little or a lot of everything I have read others of you are taking (except kudzu, that's a new one). Not much works and nothing seems to work more than twice in a row. Right now I am on 480 verapamil and 100 topomax. I understand why some of you call it dopeymax. I can tell ya this, the crap don't work for me. Anyhow- Imitrex is my pain killer. And I am going after O2 next week (incouragement from this site). I have enjoyed crawling around in here the past week and you can count on me being a staple for, well until this shit is over... You people are great. I am so glad I found you. Shane |
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Title: Re: Another newbie comes aboard Post by AussieBrian on Jun 21st, 2006, 9:55pm Welcome aboard, and the oxygen is well worth a look at. A lot of people get a lot of serious relief from it. Another thread well worth reading is at the top of the Cluster Specific board and there's a lot of useful hints there. As for something working once or twice then not at all, we know exactly what you're talking about, but to the same extent it's sometimes worth re-trying something you haven't used for a long time to see if it's going to kick back in. Either way, good luck and let us know how you get on. |
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Title: Re: Another newbie comes aboard Post by Charlotte on Jun 23rd, 2006, 6:45pm Welcome. So how often do you get hit? You lean towards episodic, does that mean 4 - 12 weeks twice a year, or short cycles, one after another, or what. Why does your doctor think you are going chronic? Have you had a year without 30 pf days? Does your Dr have ch? Pardon my curiosity. Sometimes I want to snap at people who ask me too many questions, and then I do the same thing. I'm one trying kudzu, and also using maxalt mlt. The kudzu makes the difference between being "glassy eyed" and functional. Charlotte |
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Title: Re: Another newbie comes aboard Post by ShaneM on Jun 23rd, 2006, 9:47pm Hey Charlotte, I usually have 2 - 3 cycles a year that are about 6 weeks long. Start with one HA a day and peak in the middle at 6 a day and taper back down to one. I'm a right side only. Since the beginning of this year things have been a little different, but I think it is too early to be jumping to "oh I think your chronic". I have had 3 cycles since December, including the one that I am in now. The one in the middle was about 4 weeks. And not as pronounced as my typical. I think it was a sort of rebound. The one that I am currently having is different because I am experiencing more shadows than ever before. Wed I started taking Melatonin (9mg) and started to notice a significant difference last early am. I am very interseted in using kudzu for my next cycle. How is it working out for you? I have to see the Doc this Wed and would like to talk to him about it. He seems to be pretty open to most things. I noticed through postings alot are seeing results. I even thought of printing the posting for the Kudzu so he could see the dosage others were taking. Shane |
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Title: Re: Another newbie comes aboard Post by maffumatt on Jun 24th, 2006, 12:15am Sorry that you had to find us but glad that you did. This is the place to come about information about CH. I have learned more here than from any doctor, as a matter of fact I have educated my doctor from the information gleened from here. On top of that the people here are the only people in the world that know what we go through on a daily basis. That alone makes CH.com special beyond belief. If you have never met another clusterhead you really should make the attempt. I count the people hear as some of my closest friends. There is nothing like this unspeakable horror to bring people together. I come around all year even if not in cycle, I try to give back what I get out of here but I know that is impossible, i have gained that much. These people have become my family, and Shane, WELOCME to the family. |
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Title: Re: Another newbie comes aboard Post by Richr8 on Jun 24th, 2006, 12:01pm on 06/21/06 at 21:41:00, ShaneM wrote:
O2 is my primary abortive. It doesn't work all th time, but oooh when it does! I'll be looking at an alternative approach for my next cycle. The drugs are harder on me than the CH anymore. Welcome Shane! |
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Title: Re: Another newbie comes aboard Post by Jasmyn on Jun 25th, 2006, 4:08pm Welcome Shane, yes this is the best place. ;;D |
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Title: Re: Another newbie comes aboard Post by Charlie on Jun 25th, 2006, 5:52pm Welcome aboard Shane but I'm sorry you have to deal with this horror. You'll find lots of good ideas and support here. Here is something that helped me: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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