Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Hi all - I haven't checked in for a while, but I did want to update you on me and xolair and my headache. Especially with all the discussion on how people found the group and why, because when I first contemplated xolair, I couldn't find anything anywhere about someone who had/has the kinds of reaction to asthma meds that I do. Maybe by posting it here, someone else in my boat can benefit from my experience. In a nutshell: my doctor and I decided I should try xolair because *all* other asthma meds give me headaches. Bad, daily, constant, often debilitating headaches. The drugs control my asthma, but I tend to use them as little as possible, even though it means I don't breathe very well sometimes, just so I can minimize the headache. So xolair sounded perfect, because it works differently, and there's no question that my asthma is allergic (I have other allergic symptoms, too, not just asthma). First shot of xolair - the headache started about 48 hours later, and increased in intensity so that I had to get a shot of demerol, and even that didn't get rid of it. The total duration of the headache was probably 10 days, most of it involving narcotic use; it was, without a doubt, the worst headache of my life. But it *could* have been coincidence, and I felt I just had to take the chance and do the second shot. Again, the headache started about 48 hours later, but it was much less intense (although the next week still included narcotics and a missed day of work, but no demerol this time - mainly cause I prefered the headache to the way dermerol made me feel). I don't know if the xolair is helping my asthma or not. I live in Richmond, VA, one of the places where all the pollen comes out at once in the spring and your cars get coated with yellow dust, and that's been going on for the past week. I'm getting by with minimal advair, so maybe the xolair is making the difference. And it does seem like perfume, normally a major issue for me, isn't setting me off the way it used to. I wish I knew; it would make my decision on the next shot easier. Honestly, the thoughts of another headache like this one (I'm still not done with it) make me want to cry. But I have a couple weeks to decide if I'm going to go ahead or not. And maybe the next headache will also decrease in intensity so as to be much more tolerable. Anyway, that's my update. I've fallen way behind on all my email groups and such, mostly because my job is demanding enough that when I'm not feeling well, there's not much left for the rest. But I did want to check in and say hello, and send good luck vibes for those of you who are just starting out. Obviously, I'm the exception to the rule here! Best wishes for clear breathing - Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 --- In , " jrhartley3 " <jrhartley3@y...> wrote: > Hi all - > > I haven't checked in for a while, but I did want to update you on me > and xolair and my headache. Especially with all the discussion on > how people found the group and why, because when I first contemplated > xolair, I couldn't find anything anywhere about someone who had/has > the kinds of reaction to asthma meds that I do. Maybe by posting it > here, someone else in my boat can benefit from my experience. > > In a nutshell: my doctor and I decided I should try xolair because > *all* other asthma meds give me headaches. Bad, daily, constant, > often debilitating headaches. The drugs control my asthma, but I > tend to use them as little as possible, even though it means I don't > breathe very well sometimes, just so I can minimize the headache. So > xolair sounded perfect, because it works differently, and there's no > question that my asthma is allergic (I have other allergic symptoms, > too, not just asthma). > > First shot of xolair - the headache started about 48 hours later, and > increased in intensity so that I had to get a shot of demerol, and > even that didn't get rid of it. The total duration of the headache > was probably 10 days, most of it involving narcotic use; it was, > without a doubt, the worst headache of my life. > > But it *could* have been coincidence, and I felt I just had to take > the chance and do the second shot. Again, the headache started about > 48 hours later, but it was much less intense (although the next week > still included narcotics and a missed day of work, but no demerol > this time - mainly cause I prefered the headache to the way dermerol > made me feel). > > I don't know if the xolair is helping my asthma or not. I live in > Richmond, VA, one of the places where all the pollen comes out at > once in the spring and your cars get coated with yellow dust, and > that's been going on for the past week. I'm getting by with minimal > advair, so maybe the xolair is making the difference. And it does > seem like perfume, normally a major issue for me, isn't setting me > off the way it used to. I wish I knew; it would make my decision on > the next shot easier. Honestly, the thoughts of another headache > like this one (I'm still not done with it) make me want to cry. But > I have a couple weeks to decide if I'm going to go ahead or not. And > maybe the next headache will also decrease in intensity so as to be > much more tolerable. > > Anyway, that's my update. I've fallen way behind on all my email > groups and such, mostly because my job is demanding enough that when > I'm not feeling well, there's not much left for the rest. But I did > want to check in and say hello, and send good luck vibes for those of > you who are just starting out. Obviously, I'm the exception to the > rule here! > > Best wishes for clear breathing - > Joyce Joyce, I am so sorry you are having so many problems. For some people, one shot of Xolair and they are feeling better almost instantly, for others, it can take up to a year to see real results. It took me 6 months. If I were in your position, I would ask your allergist who is giving you the Xolair to have a conference with your primary care physician and other doctors who are treating you. Maybe they can hash out what the problems are and get you breathing without headaches again! Keep us posted, Doug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Joyce - I'm glad you posted - I was wondering how you've been doing. I've rarely had pain that bad (kidney stone, but fortunately that only lasted a weekend). I do get TERRIBLE headaches from too much albuterol and/or steroid withdrawal, but have managed without demerol. Since Xolair kicked in, I've had virtually no headaches. I certainly hope you can figure out something soon. Keep us posted. Addy Quote Link to comment Share on other sites More sharing options...
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