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Topic: First post (Read 340 times) |
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Byro
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Hi everyone,
I just came across this site today after having a killer HA. I get them from time to time but had always just figured it was a migraine. Now I think there could be something else to it my first stop will be to go and get it checked out. Some of what I experience seems very similar to what I have read about CH but then there are some other symptoms I have that seem less common for CH.
Basically every month or two I get a very sharp an intense pain on the back of my head behind my left ear. Mostly for the past year or two they had tended to come on at about 2-3pm and would last for around 45 mins. Just prior to this and during I cannot stop yawning, my eyes and nose run, and my eyes get very glassy. I get very aggitated and cannot sit still, in particular I feel if I keep my head moving around the pain is more tolerable.
I have tried just about every over the counter medication I can get here including pain killers with codine in them but nothing much seems to make a real impact if I wait to the pain gets really bad. Mind you when the pain is at its peak I have never been able to test this and not take anything cause even if it helps a little it is worth it.
The only thing I have found that eases things a little is to sit in the shower with hot water running over my head.
The last few have caught me a little off gaurd as they hit their peak at around 11am.
From what I have read it seems that most CH come and go very quickly. While this is true for me, I do have a slight headache several hours before and after and feel very flat for a day or two after the intense headache.
Sometimes if I think I might be going to get a nasty headache and take some pain killers early on it seems to keep it at bay.
Anyhow thanks for the really informative site, and I hope you all have many pain free days.
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DennisM1045
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Re: First post
« Reply #1 on: Aug 10th, 2007, 8:20am » |
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Hi Byro,
Welcome! I'm sorry you had to find us. I’d start by taking the cluster quiz. Follow the link to the left. Certainly find a Neurologist and pursue a proper diagnosis. Most everyone I know with CH has the HA in one eye or the other. That is the only difference I see from your description. We aren’t Doctors. We don’t even play one on the internet  A good Neuro will get you an MRI or CATScan to rule other things out. Start keeping a diary of your HAs too – time of day, pain level (see Kip Scale on the left), duration, location, what you did that helped, what you did that didn’t help. That’ll give the two of you some history to discuss.
This is a great place full of wonderful, helpful people. Stick around and help paddle the boat. You’ll be glad you did. 
-Dennis-
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Bob_Johnson
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Re: First post
« Reply #2 on: Aug 10th, 2007, 8:57am » |
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Hope you can find a doctor with experience and INTEREST in treating headache. But self-education is most important. Suggest you start with these sources:
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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| « Last Edit: Aug 11th, 2007, 12:45pm by Bob_Johnson » |
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Bob Johnson
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Guiseppi
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Re: First post
« Reply #3 on: Aug 10th, 2007, 11:57am » |
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Great advice on the cluster quiz and the headache diary. And Bob is right, cluster headaches aren't as glamorous as Lazik eye surgery or doing tummy tucks, so they don't get much attention. Finding a doctor or even a neuro with any knowledge of them is rare.
The problem with CH is you can't run a test to se if you have it, it's more eliminating everything else that it could be! The more you know about headaches in general, and the more concise the records are you have of "your" condition, the better your odds of a good diagnosis and effective treatemnt regimen!! best of luck to you!
Guiseppi
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AussieBrian
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Re: First post
« Reply #4 on: Aug 10th, 2007, 8:49pm » |
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What they said, Byro. A correct diagnosis really is the most important step for two reasons - some of the stuff we take is very strong and may harm you otherwise, and to make sure there aren't other things going on untreated.
Finding a GP who knows about headaches can be very frustrating but you really want to see a neurologist, too. Remember always, though, that your most important weapon is knowlege so you know when you're getting the bums rush.
Keep in touch, we'll help you every step of the way, and beware anyone who tells you Carlton draught is the cure. (It's VB!)
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Barry_T_Coles
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Re: First post
« Reply #5 on: Aug 12th, 2007, 7:12pm » |
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Hi Byro
Welcome to the best little nut house around.
The others have given you the good drum, read read read there's a heap of usefull info here & keep us updated with how your going.
Cheers
Barry
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John_L.
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Re: First post -Hi, I'm John L.
« Reply #6 on: Aug 14th, 2007, 5:48pm » |
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My name is John. I was diagnoised with cluster headaches in 1988. I first thought it was a bad tooth and it took a while to find out the problem. I usually get them every 3 or 4 years and currently I am in an episode that started on July 2nd. I have a new boss at work and I don't think he understands what these are so I feel like they are mad at me. I retire in 2.5 years. I have been unable to work because I take delauded for the pain. I see a specialist Thursday. This time has been a little different from all the previous episodes in that my old medications stopped working. Also the headaches used to go away and stay away till the next one. Now they go away and come back in 1/2 hour sometimes. Very frustrating. For years I took fioricet and it worked fine. This time I had a day where i needed 13 in 24 hours-that is why we went to dilauded-I was getting bounce back headaches. I was also getting very moody-my wife is a saint! I had no idea there were so many meds to try. Do most people miss work during episodes? I work around machinery in a very loud environment. I am a little concerned this time. I have never had them last this long before. I appreciate any info you might have! Thank you! John
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Guiseppi
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Re: First post
« Reply #7 on: Aug 14th, 2007, 6:00pm » |
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We need to completely redo your approach to CH. The meds you've described cause you far more heartache and pain then they are worth. The bottom line is most pain killers are next to worthless for CH.
You need to look into a preventative medication. This is a med you take when your cycle starts to reduce the frequency and the severity of your headaches. Mine is lithium, 1200 mg a day, others use verapamil, topomax, there are many to try but worthwhile when you find the one that works for you.
Then you need an abortive, something you take when the pain starts. Your first line abortive should be oxygen. Started at the first twinge of a headache I can be pain free in as little as 6 minutes. You must breathe pure oxygen, from a non re breather mask, at a high flow 15lpm or more. Nasal canulas are worthless as are rebreather masks.
A good secondary abortive is imitrex, very effective for most but expensive and I hate how they make me feel. there are many others to explore on the board, I use only the above with an occasional oral cafergot to battle the ones that try and come back after I shut off the oxygen.
For now, try slamming down an energy drink at the first hint of a headache. Red Bull, Rockstar, any that contain the combination of Taurine and Caffeine, helps many to abort a head ache.
Welcome to the board, you should re post this as a new topic. More people will see it and respond to it. Then start looking for a new neuro, yours does not appear to have much education on CH.
Guiseppi
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| « Last Edit: Aug 14th, 2007, 6:01pm by Guiseppi » |
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Wayne
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Re: First post
« Reply #8 on: Aug 15th, 2007, 4:16pm » |
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Howzit both of you
You can see that I'm also new here and what I have learned has changed my life completely. Listen carefully to what these folks say and read as much as you can, you're not helpless against this. Good luck.
Wayne
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
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