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Title: I am new Post by bigmike918 on Feb 16th, 2004, 1:42am Hello, I suffer from CH. I just want to be able to talk to others about the pain and treatments. I will tell my story that i am sure i share with others. I am 24, the first time I suffered these horrible things was in january 1997. They lasted for about 8 weeks. Everyday like clockwork the same time everyday. Anywhere from 2 to 7 a day. At first I had no idea what they were. Doctors didnt know either. Finally about six weeks into it they discovered what it was. They prescribed me with prednisone, ergocaff, and other caffeine types of medicine. Finally they went away. Two years later in August of 1999, I started getting them again. This time oxygen and prednisone was the answer. They lasted about six weeks. Then again in November of 2001. Oxygen, prednisone, and nasal imitrex. Well now its February 2004 and I am looking foward to my next episode. Yeah right!!!! Every two years is my cycle. Right now i am in remission. Its been two years and i was just wondering if there is anything new that can help me when I start getting the SOB's. Please help. Its just great to be able to talk to someone who feels the pain. |
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Title: Re: I am new Post by Dave_Emond on Feb 16th, 2004, 4:10am Hey Big Mike, Welcome to Clusterville ... although I'm sorry for the reason that brought you here. No where will you find more understanding than here, you'll never be alone with the suffering again. Good to hear you're at least still in remission right now, will pray that your episode or cycle somehow doesn't show up this time around. If it does, feel free to talk to us about anything ... vent, scream or share with others who are new or old on these boards. There's some good things as well as bad in your message. The only good is how quickly your doctor recognized you had CH. Might consider recommending him/her to our list of doctors who know something about CH. Sounds like your doctor follwed a good route to try to help quickly. This is very rare! Sad news is, there isn't really yet any "new" medications for CH specifically, of course there were never any in the first place. Everything is still experimental. Many have found "cocktails" (mixtures of more than one med) that help them somewhat, others use methods like the "Water X 3" link you'll see a link on the left for, some have found help through non-prescription drugs, and others, like myself have had to just learn coping methods through the mind. None of these are cures though, still only different ways individuals try to beat this Beast. I first met CH back in 1996, was diagnosed correctly in 1999 and was episodic until 2001 where I went Chronic. Been through close to 50 meds over the years but just haven't found anything to help. Oxygen and Imitrex Nasal/Injections were for a while my best weapons in at least bringing the pain down to tolerable states, but over time, they finally gave out helping anymore. Hmmm ... something that might be new to you is Melatonin? This doesn't abort CH attacks, but does help you get more sleep during cycles, which CH robs us of plenty! You can find it at most any drugstore for around $7.00 a bottle. Recommended dosage for CH sufferers is 9mg. Take a couple hours before you desire to go to bed. Should add about 2 hours sleep to what little you get and gives you that little extra rest to fight the next day. I still remember when I was episodic, the anxiety or nervousness that comes with the thought of an impending cycle about to hit. Smart move to come here and look for "new" possibilities ahead of time. Trust me on this, we are a family here and don't mind at all going over different medications used by so many again and again if we can help someone find anything that will work them. I suggest you join right in on the General Posts boards and ask the same questions you did above. Many will share possible options that work for them that you could talk to your doctor about. Many of us here also have joined OUCH (Organization for Understanding Cluster Headaches), also a link on the left. OUCH is a nonprofit organization that is dedicated to getting CH exposure to the medical world and general public, to educate as many as we can on CH. To work with pharmacuetical companies to research on medications designed for CH, many more areas ... most importantly finding a cure! Please take a look at the OUCH site and see if you're interested in helping to fight for our rights to be heard and find that cure. Hope with all I have this Beast skips by you this year. Either way, feel free to join right in with everyone here, we DO understand and all hate the word "headache". We know these are nothing like headaches at all, but have been so labled by the medical field. There ... see ... I guess I almost went off on a vent of my own :-/ Jump in the message boards Mike, you'll find many, many who will do everything they can to help. Hoping for the best, Dave |
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Title: Re: I am new Post by Charlie on Feb 16th, 2004, 5:44am Welcome Mike. Glad you are in remission. This technique has worked for some: Circulatory Feedback This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” circulation to the head by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. No matter what happens during this exercise, it’s clear that something is happening. Perhaps some process is begun or halted. Whatever it is, it works for me. I was often able to shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack if I kept at it all through the attack. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief comes very fast. I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. Concentrating on the arms and hands seems easiest but anything that works for you is fine. He said to think of it as "filling your hands" with redirected blood. This can be difficult, but it's the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success. This will not always work, but I think it will always have at some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: I am new Post by Prense on Feb 16th, 2004, 9:34am Welcome aboard Mike! on 02/16/04 at 01:42:12, bigmike918 wrote:
Seems like you have a competent doc...how rare that is these days, ;;D Normally, prednisone is not used by itself as a preventative. Usually, verapamil, topamax or something else is added to provide longer term prevention so that once the pred taper is over, you don't get slammed. Pred should be considered as more of a transitional preventive. As previously suggested...stick around, read a ton and start rowing! ;;D Chris |
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Title: Re: I am new Post by Giovanni on Feb 16th, 2004, 9:38am Hello, Several things you can do which might be helpful in preventing or limiting a pending cycle. Verapamil in dosages of 240 or higher seems to help a lot of us. You'll need an RX for verapamil. The verapamil might take a few weeks to start working. Good advice on melatonin above. This stuff helps reset our "defective" body clocks. Also, 5-HTP which is available in most vitamin stores. A good multi vitamin and perhaps a B Complex vitamin would be a good idea. You might would want to do a search on the internet to make sure that these medications do not conflict with anything that you're presently taking. Some take say two 100mg 5-HTP during the day and then 5-9mg melatonin one hour before bedtime. Also, many people are doing this to prevent a cycle: www.clusterbusters.com Lots of reading here and a decision as to whether or not this is for you. I am personally trying the alternative method to prevent my pending date with the beast that starts in March each year. Good luck to you. John |
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Title: Re: I am new Post by TxBasslady on Feb 16th, 2004, 10:31am Hi Big Mike, Welcome to the board. Not much I can add to what has been said. This is a great place for support and information. In case you might be interested........we are having a TEXAS get-together in your area, February 28th. We are gonna meet at the Renaissance Dallas North Hotel. It's on Valley View....I 635/Midway. Gonna meet in the lobby of the hotel at 2 p.m. Sure would enjoy meeting you, should you decide to come. We have several CH sufferers in Texas......quite a few in your area. Let us know if you can make it. You can see a post on the General Board....Texas Meet & Greet - Dallas Feb 28. Welcome, again........stay in touch and let us know how things are going for you. PF vibes, Jean |
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Title: Re: I am new Post by Kirk on Feb 16th, 2004, 11:49am Hi Mike: Been having these suckers since 69 myself. I am so glad you're episodic. The cocktail to date that is working somewhat for me, is 480 Verapamil a day and Imitrex injections for the bastards that break through. O2 does not seem as effective for me. Lowers the pain somewhat but doesn't abort the attack. That seems to be the case with some other chronics as well. You know yourself best. Don't let the Docs give you something you know doesn't work for you. Or give you any flack about what you know does. Over on the left is a plethora of info on the right.......hmmmmm nothing there. Guess we're leftists. If you stay in remission let us know. Some of us would feel really good about some good news like that. The rest will be ecstatic. Hang tough. http://gererstorfer.net/content/tux/TN_datac.JPG TTFN |
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Title: Re: I am new Post by Woobie on Feb 17th, 2004, 9:42am Welcome BigMike - ;;D Pull up a chair and stay a while! tina |
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