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Title: Hello, I'm a newbie and I have a ??? Post by allisquid on Jan 20th, 2003, 8:52pm I have not been to a Neuro yet, although my Dr. and the Dr. at the ER have narrowed down what I have as CH. Suprise to me, I have just heared of these two weeks ago when I was researching migraines. I was told about 15 years ago that I was having sinus headaches, so I beleaved thats what it was. I changed Dr.'s last spring and he told me that thay sound like migraines. So he gave me axert to try when I felt one coming on, it seemed to work, not much better than any other pain releaver. My headaches only came on an average two times per month, more often in the fall and sping. My symtoms are as follows, it starts with a painful "twing" somewhere towards the top of my head (left, right, back or front). This is painful but, it is just a fast deal like lightning. Then the pressure behind my right eye starts and whithin 10 min. "the beast" is here trying to push my eye out of my head with a fork. The pessure (pain) is also in my cheek, jaw, temple, neck and shoulder. My nose runs clear snot, my eye starts to water and it is hard to open it, even though I don't want to 'cause light hurts. I even get what I call " yawning fits" I just cant stop yawning for the fisrt 20 min. of the CH. In the past 15 years (I am 34) I have never had a headache two days in a row and almost never did it wake me up in the midde of the night. It would come at any time of the day or in the morning. Then two weeks ago I got "pink eye" in my right eye where the pain always is, while I was at work (about 9 am) I got a CH bigtime, it would be a 9 on the Kip scale, so I went home and did my same old thing to get rid of what I thought was a sinus or a migraine. Nothing worked, I cried for the first time with this one, being a man that was hard to do in front of my wife,but it was the wosrt one ever. It did finaly go away while I took a very hot shower, four hours later. Well two days later I was awoken by the "beast", it hung around for about two hours, it was two o'clock in the morning. The next six nights he came back almost 23 hours apart each night, they would last anywhere from 20 min. to 3 hours, (WHY SO LONG?!?!?!?!) So, on the sixth night I went to the ER (a 10), I've had enough. The on-duty Dr. came up with the CH verdict from checking my symtoms in a textbook, he read it to me and it was me all over. So, if you are still reading this, I do run-on sometimes, I would like to know if anyone has heard of CH's starting like this? Having the symtoms of CH's for years and only a couple of times per month on average, then BANG, six nights in a row. Has anyone ever heard of this before? I am so glad to find a place where other people are having the same beast vist them and not thinking I am crazy like most of the other people I talk to that have never had this pain. I AM NOT ALONE!!! Thanks all !!! Randy |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by Silver_Dolphins on Jan 20th, 2003, 9:22pm Welcome Randy, While I don't share many of your symptons to a tee, I share the effects. As to the length of the cycles, I am in my 24th (I think. I lost couunt) week of this one. I was PF for three years prior and the only other cycle that I had was for 13 weeks. I guess that is what makes this so hard to treat is the different ways which we get attacked. In spit of the fact that I am a rather long cycle, there are folks on this board that are suffering worse than me for longer than me. This website is awesome. You will learn more than you ever thought you would need to know about CH. Get familiar with this site. Go to the OUCH website and join. You will learn about abortives and preventatives. My favorite is oxygen. First of all, make an appoitment with a neurologist ASAP. Start a treatment path. If you are like most folks your appointment will be in about a month or two, so call the neuro's office DAILY to see if a cancellation comes up and take it. Until you can get to the neuro, save the ER visit. Just go to the local fire department and have them hook you up to oxygen using a NON rebreathing mask with a 15 litre per minute flow rate. PFDAN Barry |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by cootie on Jan 20th, 2003, 10:15pm Hello Randy....a native Ohio'n fineally.....you'll get alot of help on here......so read up !! Pam |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by Kerro on Jan 21st, 2003, 5:50am Hi allisquid I surely do share many of your symptoms... and am also a newbie here! I have had what I now know to be CH for about 10 years or more. I used to have a few days of CH every few months, but managed to live through it. Like you I thought I had sinus infections or my neck was out, and was treated for those. Of course now I know why those treatments never seemed to work!!!!!!!! My headaches usually start in the forehead, and within about 10 mins my eye also feels like its going to explode... grrr!!! My eye runs, my nose runs, i get these big bags like I'm going on a BIG vacation under my eyes, and then my eye puffs up, and I turn into a big grumpy troll ... yadda yadda yadda... you guys all know the drill. I've just had my worst and longest bout of CH - several weeks of severe severe severe pain pain pain and virtual insanity. I was finally diagnosed by family doctor last week. Came as a bit of a surprise because CH wasn't even on my horizon, but of course reading all this info and talking to the doc, CH is exactly what it is! A bit scary, too though. I'm starting to dread the next episode in this nightmare. Today was first CH-free day except for the lingering "shadow", so I'm feeling pretty happy about that! ;D (Looks like I also share your tendancy to run-on, allisquid, sorry about that) Does anyone know if CH's get worse as you get older? (Mine certainly have) To all the regs out there, I think your site is terrific and very informative. Perhaps more importantly, you are all so supportive of your CH friends, it's just wonderful! Hope everyone out there is ok. Hope to see you again soon. Cheerio Kerro 8) |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by Charlie on Jan 21st, 2003, 6:53am Welcome Randy & Kerro: As always, sorry you had reason to find us but if you stick around you'll find some good ideas and ways to mitigate the effects of this horror. Your symptoms don't seem bizarre to me and they can easily behave as you describe. I would like to say that showers or baths can have an effect. I believe that water can affect circulation and help abort the attack. Here is another circulatory idea: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done 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. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able 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. Often, I would suffer only minor discomfort instead of excruciating pain. 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 but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least 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: Hello, I'm a newbie and I have a ??? Post by Opus on Jan 21st, 2003, 7:49am Randy, Everyone seems to have different symptoms that start the cycle and different secondary pain. Most start a cycle with shadows which feel exactly like a CH but at a low pain level. Others start their cycle with kip 10. The beast can hit regularly, some have up to 11 a day or it can hit randomly and even skip days. The length can also change, Mine went from 2 hours to 6 hours in the last cycle. The best way to tell if you have a CH is how the pain hits. A migraine is a pounding pain, A sinus headache is usually in slow waves, and a CH is steady, unrelenting, boring agony. Also a Migraine you need to lie down, a sinus you need to sit up, and a CH you need to rock, pace, bang your head. I hope this helps. Opus :P |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by firebrix on Jan 21st, 2003, 5:43pm Welcome allisquid! Sorry you had to find us, but glad you did. There's so much info. here and on the OUCH site - have you checked that one out yet? CH starts differently in many humans - no two CHers are often the same, Mopar used to get the odd blinding headache, but suddenly, they started occurring after work each night and increased to the point where he is now chronic. This does not happen to everyone however! When he approached his doc for the first time, he was asked if he had a drug problem!! (I think he would've preferred the sinus diagnosis!) Hang in there, there's lots of great people here and they all help if asked to. Wishing you PFDAN firebrix |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by domm on Jan 21st, 2003, 5:46pm allisquid and kerro - welcome to clusterville. I hope you're reading everything here and on the OUCH website. To answer one of the questions - no - it doesn't ease up. However, you will find better and more effective ways to deal with it. I use oxygen and Imitrex as abortives and Verapamil as a preventative. Pull up a chair domm |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by tgz23 on Jan 22nd, 2003, 12:19am Welcome Randy, I found so much useful stuff here it's great. We're all different in how they run their course. My cycles change the older I get, longer and intense longer. I've hit rock bottom a few times on this cycle, it started in August and I think it's finally ending I hope. I've questioned myself is there a god, wish I was never born, poor me going against what we were taught when I was young. I've hung on to my wife for dear life while sobbing uncontrolably. You can get through this. The best thing in my arsenal is Imetrex. The statdose pen. When you see a doctor or a neuro be sure to ask for some sampes. I wish you the best of luck and if need be you can contact me. Tim |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by SommelierCH on Jan 22nd, 2003, 8:04am allisquid and kerro, Well, at least you found us, sorry you had to. There’s a whole bunch of us here. I ended a ten week cycle end of Dec., it was eight weeks last cycle. Cycles used to be 3 yrs., last one was 1yr. 10 months. I’ve had them since 1986. What works for me is: OXYGEN, 100% pure @ 10 lpm, through a non-rebreather mask. TRIPTANS, Maxalt MLT 10 mg. or Zomig ZMT 5mg. Both are tablets, that dissolve in the mouth, entering the body fast, under the tongue. Get a script for the O2 and use it whenever the shadows start increasing. Always jump on it as fast as you can. Keep us posted, PFDAN, David J. |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by catlind on Jan 22nd, 2003, 9:14am Randy and Kerro, Welcome aboard. Grab an oar and start rowin! You have discovered one of the best weapons you can find against this horrid affliction, and that's others who KNOW and UNDERSTAND completely what you go through. Through the support of this board, and the information here and at OUCH you can arm yourselves to battle the beast and win. Many people who find this place when they read the first page, cry and cry because they have finally found a place where they are understood and they find some hope. Read Read and read some more. Wishing you both pain free days and nights. Cat |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by cootie on Jan 22nd, 2003, 10:44am Hi Kerro, I don' think I said hi to ya yet.....Pam :) |
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Title: Re: Hello, I'm a newbie and I have a ??? Post by Mark C on Jan 22nd, 2003, 12:01pm Welcome Randy and kerro, Sounds like you may qualify for membership.......sorry. You are among some of the most knowledgeable and caring people in the world, this place is amazing. You all surf this site and the OUCH site for information to battle the beast. Here is a link to get you started..... PFDAN's Mark |
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