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Title: Will there ever be a cure? Post by tarheel03 on Sep 30th, 2006, 12:24pm Hello all, I started getting cluster headaches back in high school - I am now 24 years old. I can remember having to go to the nurse’s office and just sit there in pain, not knowing what was wrong with my brain. My grandmother suffers from them as well, and she has been an incredible support and source of experience for me throughout. I get clusters once every two years, starting the last week in September. I honestly can't remember how long they last - I think I block it from my brain once the sequence has passed. In college, the headaches were more painful and the episodes started to last longer. I finally went to the Headache Wellness Center in Greensboro, NC, and they suggested I take Verapamil EVERY DAY of my life. I don't. Of course I want to prevent the headaches, but the thought of being tired all the time from medication was far too scary. I am a runner, triathlete and am active all the time, so I need all the energy I can get! So, the Greensboro doctor had no idea about Oxygen. I had to tell him about it (something I learned from my grandmother). He also gave me samples of Imitrex. The first (and only) time I took Imitrex, I thought my brain was going to implode. I've never taken it again. The reason for my post today - I am just entering a cycle, and am looking for insight, information and inspiration. Most importantly, the hope that someone really is looking for a cure! Something interesting happened to me last week that I thought I would share. I was in the very beginning phases - you know, when the headaches are just a glimmer and a horrible foreshadow of what's to come. I had a beginning headache this past Monday morning and was on my way out for a run. Within minutes, the headache was gone. Now, I am not sure if this was because it was just a minor headache and would have gone away on its own, but I had a thought - that maybe the endorphins that are released during running could help ease the pain. This could be totally unfounded, but I will test it out the next time a headache comes during the day (hard to go out for a jog at 2 in the morning!) and will post the results! It is so nice to know that there is such a network of support and information out there. Now, if we can only find that cure =) Take care - Meg |
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Title: Re: Will there ever be a cure? Post by davyp on Sep 30th, 2006, 12:47pm Hi Meg, First i am glad that you found CH.com but am also sad that you needed to. Another member here, calisto has also mentioned exercise. Here is the thread containing it : http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=knowya;action=display;num=1157853529 Have a read as it also contains a lot of other information also have a good look at the links and read as much as you can as the more clued up you are the less chance of a doctor fobbing you off with somthing thats no good for CH. :) Dape :) |
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Title: Re: Will there ever be a cure? Post by thebbz on Sep 30th, 2006, 2:42pm Boy that is a good first post! :P Welcome and dont let this condition get to you. I would settle for a decent treatment let alone a cure. The research I have done may indicate this is an abmormality that would be something out the question to "cure". The leading medical research is being conducted in several locations, so rest assured they are trying. It is difficult as we are few in number. From reading your post your in a very good position to fight this. You need to only search the internet for neurology and you will find many, many are truely looking for the rest of the story! Keep up the good fight jb |
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Title: Re: Will there ever be a cure? Post by Bob_Johnson on Sep 30th, 2006, 3:24pm Meg, you're taking me home! Lived in Greensboro for 15-years, had a little place in Sunset Hills before moving to Rutherford County; now in Delaware. Graduated from Grimsley and Guilford C. But the issue: you have stopped using two highly effective meds out of fear. It's not a good way to make judgments about something which is so important to your quality of life. I was just talking to a neighbor who had her knee replaced this week; in bad pain because she refused the pain Rx; didn't like the side effects. As we explored the problem it turned out that she had misread the directions and was taking too much! An easy adjustment in dosing and she is comfortable and mobile. My point is: there are options, adjustments to dosing and to the specific meds being used--but working thru these issues requires that you work with your doc and not against him. You have great deal to learn about CH before it's wise to make these decisions on you own. Start with: 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 There is much more this group can offer as you tell us your needs. |
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Title: Re: Will there ever be a cure? Post by pattik on Sep 30th, 2006, 4:02pm Hi Meg, Many CH sufferers find relief from exercise, so continue using that method as long as it continues to work for you. The more you read on this site, the more you will see that everyone deals with their headaches differently. What works for one, won't necessarily work for everyone. And what stops working for someone, may work again at a later time. So good luck with your research, and don't hesitate to ask questions if needed. Patti |
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Title: Re: Will there ever be a cure? Post by Callico_Kid on Sep 30th, 2006, 4:39pm Endorphins are a definate maybe. Some of us get real relief from any type of aerobic excercise. Personally it amplifies mine. Pay close attention to what Bob Johnson tells you. He has done a lot of research on his own, and has been very helpful to many of us. Don't give up on the treatments out of fear of what they do. YOur body will adjust to verap given a little time. jc |
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Title: Re: Will there ever be a cure? Post by Edski_1 on Sep 30th, 2006, 10:20pm My personal pet theory recently is that somehow a decreased oxygen level reaching our brains causes a drop in seratonin, and then the trigeminal nerve has essentially an "allergic reaction". So the endorphin boost idea fits this general hypothetical framework - endorphins result in increased seratonin levels... Glad you found this place. We all are glad we found it! :) |
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Title: Re: Will there ever be a cure? Post by tarheel03 on Sep 30th, 2006, 11:48pm All, Thank you so much for the thoughtful replies. What an incredible resource this site - and all of you - truly are. I think, for better or for worse (and I'm sure most of you would say worse!), I have chosen to only deal with my condition on the day the cycle begins. Meaning, I feel them coming on, call my internist, get the O2 prescribed, and deal with the pain from there. I am not sure if this comes from fear or just plain denial. That being said, I do think the advice you've given me to re-explore some of the preventive/abortive measures is very valid. And I may not have agreed a week ago...but now that my sleep is once again being rudely awakened by the feeling of a knife through my temple, I may just pay attention! Thank you again for the thoughts and kind words. What a find this site has been - and it's only day one! -Meg |
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Title: Re: Will there ever be a cure? Post by tarheel03 on Oct 1st, 2006, 12:07am PS - Thought some of you might enjoy this. My mother is absolutely the greatest woman ever - and she only wants to help...but I couldn't help getting a chuckle out of this email I received from her just now: Meg -- You may want to think about the birth control pill's connection to your headaches. You didn't get these headaches before you started taking the pill. It's worth looking into I think. Lv mOM =) If only! -Meg |
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Title: Re: Will there ever be a cure? Post by BB on Oct 1st, 2006, 12:29am Will there ever be a cure? Yes, of course! You are working on one right now: Yourself ! Or rather your attitude towards preventive meds and methods .. All the best Annette |
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Title: Re: Will there ever be a cure? Post by marlinsfan on Oct 1st, 2006, 7:19am Meg, I battle the beast with O2 and melatonin only. I've read so much about verapamil and how people's cycles seem to be extended, that I've also preferred not to take it. Melatonin works great for me to help me thru some of the nighttime hits. 9 mgs about 30 minutes before bedtime is what I take, and after about 5-7 days, it really starts to work. PF wishes. |
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Title: Re: Will there ever be a cure? Post by E-Double on Oct 1st, 2006, 7:47am on 10/01/06 at 07:19:11, marlinsfan wrote:
G-d! Jose and I could be leading the same life......... I do the same. I have been off meds since MArch and deal much better. This is a personal choice and I only advocate for anyone to find relief by whatever works for them AND to be WELL EDUCATED! I am still chronic but overall feel better off meds. Ya never know |
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Title: Re: Will there ever be a cure? Post by chewy on Oct 1st, 2006, 8:43am Quote:
Great answer! |
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Title: Re: Will there ever be a cure? Post by Linda_Howell on Oct 1st, 2006, 4:09pm Quote:
Bless her heart. She just wants a grandchild. lol |
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Title: Re: Will there ever be a cure? Post by Charlotte on Oct 1st, 2006, 4:59pm on 10/01/06 at 00:07:07, tarheel03 wrote:
...might trigger migraines, because of hormones, but the current general belief is ch may be happen because of an anomoly in the hypothalamos(?). Peter Goadsby in the United Kingdom has been doing a lot of good research. Charlotte |
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Title: Re: Will there ever be a cure? Post by hisham_t on Oct 5th, 2006, 9:54am Hi all and welcome tarheel 03 , i am new here as well but i think it's great that we found each others so we can share our experiences to fight that devil in our head >:( I am atheletic and i do body building regularly , but when i have the cycle i can't go to the gym , may be because of the medictions effect '' verapamil'' or the fear that any of the shadows turn to a full attack when i lift weights . I don't know may be just aerobic exercises or jogging might help by encreasing the O2 blood level .. let me try as i am in my cycle those weeks :( take care tarheel and i wish you pain free soon :) |
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Title: Re: Will there ever be a cure? Post by tarheel03 on Oct 11th, 2006, 10:45am Thank you Dr. T! I am sorry we had to meet here too - I have been reading your posts on your own intro message and hope that you are nearing the end of your cycle. Mine is still ramping up...had my first morning CH today after a week of REM sleep CH's, gradually building up to pre-sleep CH's. The one thing that I always try to remember is that although having this condition is unfortunate, it certainly makes you appreciate your health as soon as that last flicker of pain diminishes and the beast (I like that term!) disappears - if only for a few hours. Pain free wishes to you and all on the board - Take care, Meg |
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Title: Re: Will there ever be a cure? Post by hisham_t on Oct 12th, 2006, 11:09pm Hi tarheel03, Glad to hear from you and i appreciate your concern and i wish your cycle will come to an end soon . After i increased the verapamile dose to 200mg/day , the attacks are less , like every other day once and less severe but may be it is the end of the cycle as well because this is my 5th week . I still recomend you to try some of the preventive medications at the beginig of the cycle at least to prevent you from the nocturnal attacks which i think is the worth experience to wake up from a nice sleep by a terrible pain. I wish you a pain free time and soon to hear that you'r back to your normal life and activity after the cycle ends Take care, |
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