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Title: hi all Post by MoniFu on Oct 26th, 2006, 8:35pm Hi all. My name's Monica, and I've had sorta-cluster headaches (more below) for about a year and a half now. I'm female, in my mid-20s, and I live in Washington, DC. I've had three three-month long bouts of recurring totally debilitating one-sided headaches that my neurologist diagnosed as a mix between cluster headaches and either migraines or hemicrania. They're crazy painful, often having 7-40 headaches per day that rank between 7 and 10 on the Kip scale. I'm currently three months into my third bout (which I sure hope is near the end). I've currently been out of work almost a month & a half now. (My current employer is awesome about this-- I'm going onto disability leave, and may can telework when possible.) I've tried a bunch of medicines, all to no success so far. I also have tried a number of complementary treatments, including acupuncture and therapy. Mostly, I'm here for a the company and support-- I can see from what I've read of the messageboards that y'all are certainly sweet and supportive! I do have a couple questions though: * If there's anyone in the DC area, do you know of a support group for clusterheads (or people with similarly serious headaches)? If not, I'm working with the Nat'l Headache Foundation to see about starting one. If you're interested, drop me a line! * Have any of you had any luck with bodywork (like feldenkrais, craniosacral, myofascial release)? * My current job unfortunately ends next year, and I'm concerned that these often-disabling headaches will make getting a new job difficult. Do you know-- Do CH count as disability for employment? Do I need to tell potential employers that I have them? Can they ask me about them? Thanks everyone! |
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Title: Re: hi all Post by thebbz on Oct 26th, 2006, 9:19pm Hello and welcome, Your potential employers cannot ask any health related questions. No need to tell...wait for the right time. You should be able to work through these. Many here do including myself. Not that it's the only way, it's my preferance. You do need an abortive, transitional prevent and eventually a prevent that works for you. There are many way's to keep working. Timing, a plan, and being tougher than hobo turds helps. all the best and keep on truckin. jb |
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Title: Re: hi all Post by tarheel03 on Oct 26th, 2006, 11:00pm Hi Monica, Welcome to the board but truly sorry you have to be here. 7-40 headaches per day between kip 7-10 sounds rough - you are a trooper! Hang in there, you will beat this episode too. Have you had time to visit the links to the left? There are some great tips here about abortives/preventative measures you can take. Have you ever tried Oxygen before? This is extremely helpful for many and aborts my CHs in 10 minutes or less if I take it right away. I am from Washington D.C. - have never heard of a support group for CH here, but then again I have never looked! Please feel free to PM me about it =). You sound like you've got the determination to fight the beast, so keep fighting hard! PF wishes, Meg |
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Title: Re: hi all Post by Giovanni on Oct 27th, 2006, 8:18am Indomethacin, a non-steroidal anti-inflammatory drug (NSAID), usually provides rapid relief from symptoms of Hemicrania continua. Your doctor should definitely have you on this as it works for over 90% of this type of headache. As you said above you might have a "combination" of this and CH. What you do need is a neurologist who specializes in "headaches". Good luck, John |
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Title: Re: hi all Post by Charlotte on Oct 27th, 2006, 10:12am Hi, Monica, and welcome aboard. May I ask what meds you tried, dosages, frequencies? Sometimes meds work better in one combination than in another, and something you already tried may be good combined with something new. It is good that your dr knows you can have more than one type headache at a time. To your upper left, below & to the right of the CH.com logo, is a search button which you can use for the internet or for this site. Some things you might want to search are: SUNCT (short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing), hemicrania continua, paroxysmal hemicrania, and/or TAC (trigiminal autonomous cephalalgia). To my understanding, hemicrania continua ramps up and down with no pf time, while paroxysmal hemicrania has pf time between hits. Not too familliar with SUNCT but it is the most frequent. All can co-exist with ch and each other. Charlotte |
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Title: Re: hi all Post by mathieulives on Oct 27th, 2006, 11:18am Hi Monica I'm a newbie, but misdiagnosed for a while. You sound tough hang in there! I had migraines as a kid and was misdiagnosed as sinus headaches during my 20s. My Neuro says I may be what he called a "hybrid" because I am sensitive to light and sound sometimes. Now concerning work, I work in HR specifically I am a recruiter and an employer can not ask you any questions regarding medical conditions. Even in cases where you bring it up accidently, they should not even probe. HOWEVER, just as important, when you interview for jobs, make sure you come up with behavioral questions to ask the employer that will allow you to understand thier policy or how they support or respond to people with medical conditions that are not common. You want to ask these questions without giving away that you have a condition. I can give you some examples if you'd like. Hang in there, its great to hear a familiar story! Keep going forward!! RM |
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Title: Re: hi all Post by Linda_Howell on Oct 27th, 2006, 12:26pm Quote:
Monica, THIS site is the support group for CH-ers, however if you're talking simply about getting together with others in your area, go here... http://www.clusterheadaches.com/states.shtml |
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