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Title: New member Post by ouchquitit on May 14th, 2005, 10:54pm Hello. I am fairly new to the CH world. I didn't get my first of what I originally thought were migraines until a little over a year ago. Incidently, it started two months after having Lasix surgery. (I just mentioned that, because I have no idea if there is any link to this and CH's.) Anyway, I woke up on New Years Day 2004 feeling like I was hung over, only I didn't drink the night before. The pain felt almost like a severe sinus headache. There was a burning sensation along the floor of my right nostril everytime I would take in a breath. My right eye felt like there was an icepick in it. The bones around my right eye, cheekbone into my TMJ was so tender. The sound of my own voice talking caused sharp pain in my right temple and it was just awful. This lasted the entire day and eventually became a full blown tension headache too. I began having these exact symptoms once or twice a month (usually cyclical/hormone related), so I chalked it up to my age (40). Sudafed, Ibuprofen and a strong cup of coffee along with an ice pack was my treatment, and this only helped relieve the symptoms. It never actually got rid of the headache. Finally, by July I was in my doctors office crying and begging him to shoot me! He immediately gave me a Maxalt and had me rest for a half hour or so....... This was the only time my headache went away completely. It was like someone threw a switch. I went from blinding pain to nothing at all! I was thrilled and also worried. I still thought these were migraines. The next several months went by with the number of episodes increasing until by this past Feb. I was up to 6 in one month. I finally saw a neurologist who said these were most likely Cluster Headaches. This was the first time I ever heard of them! Anyway, he said to stick with the Maxalt as long as it works and I am not taking more than 5 or so in a month. I still need to get an MRI/MRA, but he said he feels really confident that this is a CH problem. There were a couple of areas that I didn't fit the "profile", so I wanted to run them by anyone who might be able to shed some light on them for me. My headaches will last for an entire day. From what I am reading, clusters are headaches that come and go for shorter cycles. Is my situation common? I often wake up in the middle of the night with them too. Normal? Mine are always on the right side. My eye doesn't water, but remember I had Lasix surgery which left me with a dry eye problem......especially in the right eye........hummm???? My right nostril gets stuffy and I feel a "suction" type of sensation way back and up in my palate. Like sinus pressure. Ice is my favorite, but sometimes hot liquids will feel good up against the roof of my mouth.... Hot tea for example. I get very agitated and anxious. I can't concentrate or tolerate reading or focusing on anything. I get tension in my right neck up into my head which makes me want my neck rubbed constantly. I could keep going, but this is the general idea. What do you think? Am I a member of the club??? [smiley=huh.gif] Thanks, and I hope to hear from someone! BDY |
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Title: Re: New member Post by zebb37 on May 15th, 2005, 1:09am sure sounds like it to me :'( there is a quiz you can take on the left but i'd doubt very much you'd need to. Just hang in there [smiley=hug.gif] |
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Title: Re: New member Post by Sean_C on May 15th, 2005, 1:27am Sounds like clusters but I think something else might be going on there too. We had this discussion in another thread. Make notes of your headaches so that when you see your nuero you can explain in detail exactly what is going on. Sean........................... |
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Title: Re: New member Post by Bob_Johnson on May 17th, 2005, 10:47am I hope your neurologist has experience with headach: we have seen too many of them who still lack some basic skill/knowledge in working with cluster. Suggest you start reading some good material and share it with you doc. Having some shared ideas about good treatmen will aid your anxiety and give you confidence in his treatment plan. Start with either of these books: MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. 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. --------- Print out: Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002) http://www.brightok.net/~mnjday/chtherapy.pdf |
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Title: Re: New member Post by Nolan on May 17th, 2005, 11:09am Except for just a few details, sounds like clusters to me as well. There is good advice here, both in the replies and the info listed on site. You may not feel like it, but read, read, READ! I actually convinced my doctor to give me a prescript for 02, and impressed him with my knowledge of what exactly was happening to me, all by read the info on just this site alone. Do the same. Not only does the info give piece of mind, but also (during the pain cycle) it keeps you from having those dreaded 'what's wrong with me!!?' thoughts. You have clusters, they will probably come back, and you're going to have to live with it. I have, for 25 years (I'm 45) but I know more about the bitch than I used to. Knowledge is power! Stay positive, stay focused and stay strong. The Maxalt actually helped me too, last time. But I have been fooled in the past...by trying something that worked, just when the cycle was about to end anyway. Hang in there! Talk with other sufferers and get involved. It helps- |
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