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Title: Hi Everyone... Post by Redline on Aug 31st, 2006, 9:01pm Hi...im glad to see theres a fully detailed forum out there for this painful problem...i guess my first quesiton is to see if there is anyone that doesnt agree that I can now call myself a CH sufferer.... me: im 25, male, very active (race road and mt bikes), no prior medical problems, very rare to get mild headaches..until now... symptoms: 7 headaches in the last 9 days....no more than once a day. I can feel them building behind my right eye, and within 10 minutes, i have a pulsing pain through my right temple, my right eye waters, gets red, and is really sensitive...usually it helps to halfway close my eye, but it seems that if I close my eyes totally, it just intensifies....this goes on for almost exactly 1hr each time, and then its gone...while its going on i tend to get really hot, and ive vomited the first time. As im sure you know, nothing really helps - laying down (i cant lay down for the first 20min or so...i have to move around), walking around, etc....Basically no matter where they happen i have to stop what im doing because i get weak and i cant do anything but attempt to minmize the pain until the hour is up and im perfectly fine again...i guess the good thing is ive never had them wake me up at night...they seem to either happen mid-moring, or early evening..... Since this is the first time is happend, i have no idea how much longer this is going to go on for....i guess a few more weeks....i hope it goes into remission forever! I dont think ive ever felt this sort of pain before....ive never vomited from pain before until now... The only thing i can think of that i have done differently recently was my brothers wedding where we took overadvantage of 5 days of an open bar....normally i dont drink more than a few beers socially on the weekends, so i wonder if the excess alchohol somehow triggered this. While they have been going on, ive tried everything to see if it was a trigger, and sofar, no luck...they just start out of nowhere, and for no common reason. I went to my general doc after day 7 since it was getting pretty ridiclous that I had to stop everything I was doing and wait for an hour, and obviously not going away.....he was pretty unimpressed....he said if i really wanted i could get a perscription for some migrane drugs and see if that helped, but that was about it. Im not really a fan of taking drugs, but if this keeps up, i dont know if i can take it...he suggested imitrex and one other drug...does there seem to be a concensus to what works better? Should I go check out a neural doc or is that a waste of time since there really is not much of a cure out there? anyway, thanks to everyone who reads this...you now have yet another fellow sufferer of this infernal debilitating headaches....i cant hope hard enough that this ends sometime soon.... Doug |
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Title: Re: Hi Everyone... Post by Bob_Johnson on Aug 31st, 2006, 9:19pm Explore the buttons on the left side, especially the self-test and medical information. Sounds positive for CH, from what you have written. Re. treatments: start by finding a doc with experience in treating headache. Your doc does not sound like the person you need. 1. Search the OUCH site (button on left) for a list of recommended M.D.s. 2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice. 3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate. 4. http://www.achenet.org/physicians/ On-line screen to find a physician. 5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician. ========= Good intro to treatments: 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.brightok.net/~mnjday/chtherapy.pdf ======= When you are ready to learn about this new world of CH: 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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Title: Re: Hi Everyone... Post by Barry_T_Coles on Sep 1st, 2006, 3:10am Hi Doug Welcome, sad you had to find us but you are in good company. Bob’s already given you some of the soundest info around so I won’t reiterate. Like yourself I not a medication person if I can get away with it; my preference is oxygen cheaper than meds and works very well for a lot of us. Have a look onto the medication, treatment & therapies area and read up on the Reds Bull threads, a lot of us are getting some good results using it for the low level hits and it’s probably a good starting point for you. Wishing you some PF time Kind Regards Barry |
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Title: Re: Hi Everyone... Post by Callico_Kid on Sep 1st, 2006, 3:42am Welcome aboard. Pull up a chair and make yourself at home. Bob already gave you about all there is, and I would concur with him fully. Especially on finding a GOOD Dr. You will probably have to look to find one who knows what he knows, and more importantly what he doesn't know. Take the time to read as much as you can absorb and consider yourself fortunate that you got a diagnosis so quickly! Many of us went years and spent thousands of dollars on worthless treatments. Check out the Meetings and Get togethers section for Davcon 07. It is a weekend function held in Davenport IA in Jan. It will give you an opportunity to meet other clusterheads in person and find people who understand what it is you are going through. It is a lot of fun too! Jerry |
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Title: Re: Hi Everyone... Post by Guiseppi on Sep 3rd, 2006, 5:11pm Thye only advice I'll repeat is get a good doctor. Your current doctor clearly is clueless, which with this problem isn't unusual. You're right, there is no "cure" for this condition but there are many treatments that allow you to maintain a quasi normal life while you are on cycle. Good luck and let us know what works for you. Guiseppi |
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Title: Re: Hi Everyone... Post by Barak on Sep 3rd, 2006, 5:25pm welcome aboard. youve gotten really really great advice so far but keep us posted on your treatments in the future and what works and doesnt work and we can all work together. with all of us there is a wealth of info like you wouldnt believe. hang in thre and anytime you need to talk just message or say something anyone would be glad to help and listen. good luck to you and yes i say try out the nuero not all of them give worthless advice...well i wish you many PF days and years of remission. Barak |
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Title: Re: Hi Everyone... Post by Sandy_C on Sep 3rd, 2006, 5:32pm Hi Doug, and welcome. Ditto everything Bob said. Primary - find a good doc who knows about headaches - CH in particular. Worst case - find one who is willing to learn. Print out the Britok info and take it with you. Everyone here knows what you are going through. There is more combined knowledge about CH on these boards than anywhere else. Someone is always here - read everything - ask questions - we'll try to answer -learn about CH. You are your own best advocate, and we'll help you all we can.. Sandy |
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Title: Re: Hi Everyone... Post by Redline on Sep 3rd, 2006, 7:23pm Thanks to everyone for the welcome and the quick responses and all of the advice...I will definitly be looking for an educated doc after the holiday weekend is over... After doing a bunch of reading, and a bit of educated guessing....what are the odds that racing/riding my bike all the time could be a triggert to the headaches during a cycle? Generally i ride 2-4hrs a day 4-6 times a week. I need to start a journal or something to make sure, but it seems like it might be correlated, as i seem to remember my last few headaches were right after i got off the bike, or at least within an hour of doing so.....I know the physical activity causes blood vessels to dilate, which is the basic foundation of a headache...but i guess my question is does excercise dilate all blood vessels in the body, or just specific groups, like those related to oxygen uptake, and maybe not the blood vessels in the brain? (Rereading this, i dont know that it makes any sense at all...im just fishing for anything that might be a trigger!....not that id ever stop riding) Finally, I am going to see a different doc first, but my current doc said something about either imitrex or zomig....my searches seem to say that although they're not the best suppressant once headaches begin (vs O2, etc),they do work...my question is, is it totally based on the individual as to what works better or is there any info i couldnt find that leans towards one or the other.... Thanks again for everyones help. Doug |
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Title: Re: Hi Everyone... Post by Guiseppi on Sep 3rd, 2006, 11:28pm Very few coomon triggers I've seen written about on the board. One I have seen is the "let down." Many people have written that when they are on cycle they "never relax" because as soon as they relax they get hit. Might be what you're experiencing. Personally my only triggers when on cycle are stress, screwing up sleep patterns or alcohol, especially whiskey. Wishing you luck. Guiseppi |
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Title: Re: Hi Everyone... Post by maureenv on Sep 4th, 2006, 12:56am Welcome, Hello and welcome unfortunatly what works for some doesn't seem to always work for others. 02 has the highest sucess rate almost evey ch suffer will tell you to get 02 as fast as you can. It really is the best. Next to that is imitrex there are mant perventitives out there I myself am having great sucess with verapamil and melatonin but there are many different meds to help. read read and read. Then find a great dr and try 02 is my best advice to you. Good luck to you and PF wishes Maureen |
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Title: Re: Hi Everyone... Post by Kevin_M on Sep 4th, 2006, 8:58am on 09/03/06 at 19:23:26, Redline wrote:
CH are notorious for appearing when you've settled down, stressless, relaxed. Being that we need to relax and to sleep, preventatives are important. Quote:
Doug, actually they are referred to as abortives and are effective once CH is ramping up, as is O2. The the fastest triptan abortive would be the injectable Imitrex. If prescribed the trex or Zomig and it is a nasal spray, CH will subside after more time but both work well. Oxygen is a wonder though too, if you can get oxygen and a triptan as abortives, both could be useful in different settings but start working with a preventative to begin to see what works. As a nasal spray, the Zomig is excellent but if quantity is a factor getting prescribed Imitrex may allow more per month. see how it goes with a doc. |
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