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Old 12-08-2004, 10:14 AM   #1
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froggy123 HB User
Unhappy Sort of at a loss...

Hello all,
I haven't been on this board for a really long time, so I guess I'll introduce myself again since I'm sure there are new people here. I'm Jessica. 17 year old female. I was diagnosed with migraines when I was 12, but I had migraines before that, just not often enough to cause any alarm. I have lots of the typical symptoms (others not so typical) during my migraines - sensitivity to sound, numbness in my right arm, pressure throughout my forehead and temples, dizziness, stabbing pain either behind my eye or at a certain spot in my forehead, loopiness...and a rash on my cheeks. <thats my tell tale sign that I have a migraine. I wake up with them about 99% of the time, and my parents always know that I have a migraine before I do by looking at my face. It mimiks the malar rash like in those with lupus. We always thought that my migraines were hormonal. I'm a weird one, I would not get a migraine the week that I had a period, compared to most who got a migraine during their period. Last spring, after trying different birth controls, I was put onto the DepoProvera shot, which helped a lot. I had a breast reduction when I was 15 hoping that would help. I also go to a chiropracter. Ive been on topamax, imitrex, paxil, frova, something that started with a "p", and some other meds. I've been through tons of tests, MRI, CT scan, MRA, allergy tests, eye tests, EEG, blood tests, and a whole battery of tests that were done when I was in the hospital for a week. Most came up with nothing. I'm allergic to birch and cedar. MRI showed that I have fibrous dysplasia in my forehead/sinuses- its like some kind of something, I've had it described as a benign bone tumor that causes the bone to become mesh like, and actually it has totally filled up the sinuses in my forehead. Also that I have a cyst on my cheek and I have an impacted tooth in/near my sinuses. The blood test that they do for lupus came out a little elevated, but not enough for a diagnosis. I think that's it, not too sure though. It seems like my migraines are always at their worst in the fall/winter/early spring. So basically from late October to February. I used to have migraines later through the spring and summer, but it seems like the Depo took care of those ones. It seems like weather changes cause migraines in these winter months. Like monday and tuesday a big storm came through, and now today it went from 40 degrees to 65 degrees. So you know it, I've had a migraine the past three days today it's worse then the other 2 days. I'm not sure what to do about it. I'm not on any preventatives anymore, or the kind that you take when you have a migraine because the docs took me off of them when the Depo was helping. I've been taking Vicodin that I had left over from a recent knee surgery, which helps with the pain, but not enough to knock out hte migraine. Its so frustrating though, the last three years I've had to go on homebound schooling because of these migraines, because they caused me to miss too much school because all I can do is sleep for the most part. Now the migraines have made their return. Its my senior year, i don't want to have to be homebound again. I'm also looking at colleges, but at a loss of where to go. I want to find a place where the weather wont affect me as much. I live in Delaware, and out weather is just wacky! There's a school that is near Albany NY that I like. Their winter break starts the week before thanksgiving and ends after New Years, so that is good because that's my worst time of the year. But are there any states that anyone knows of that are better places to live in the states? I thought NY would be better than here because it has a real 4 seasons. The school is very accomadating, they told me to call them that weekend if i happened to have a migraine during my SAT tests because it would affect my scores. I talked to a teacher there, and said that if i'm out for a week, they'll probably come to my dorm room and tutor me. That's a huge relief! But what to do now. Even my parents are at a loss. They tried getting me into the doc but they're booked. They said that they would write us a referral for a specialist but my parents dont know where to go. I've been to neurologists in town and at A.I. Dupont Hospital. I've seen an ENT at Hershey Medical Center. I've been do an endocrinologist at Walter Reed Army Hospital. I've been to two psychologists - which didn't think the migraines were psychological. I go to the chiropracter regularly. Were thinking of calling my ENT though, because of the pressure in my forehead when I have a migraine lately. Its so bad that it makes my eyes water. I've heard that barometric changes inflame stuff in the body, which could be why my forehead has so much pressure if my skull in that area isnt solid. My mom came up wiht that connection. But that scares me, like I hate this feeling because it keeps me from sleeping and i want to sleep during my migraine, but the only way to get rid of it is having surgery where they take out the affected area of my skull and putting in bone grafts. Thats not something that I want done!

So were totally at a loss as to what to do. Anyone know anything that may help or have any ideas?

Thanks
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Old 12-08-2004, 03:16 PM   #2
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Blowfish HB User
Re: Sort of at a loss...

You poor thing. I also have debilitating migraines, however, it doesn't sound like mine are as bad as yours. I take Propranalol/Inderal daily at 100mg (my neurologist said that most doctors greatly underprescribe this - giving pts 25-50 mgs, which is not enough) and Imitrex for attacks. Which preventative and what dosage were you on? Also, I've heard that anti-seizure medications are now being used to treat migraine with some success. Have you ever tried Botox?

 
Old 12-08-2004, 04:05 PM   #3
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froggy123 HB User
Re: Sort of at a loss...

Hi Blowfish
Currently I'm not on a preventative. I was taken off of meds because my docs thought that the DepoProvera took care of the migraines. The fall and winter months are my worse months, and I haven't been on the shot during these months before so I guess that's kind of bad planning huh? I have been on Depakote before, its a seizure med, and actually it caused me to have pseudosiezures and then caused my blood pressure to drop so much that i would pass out. Not fun at all! Pretty scary too. I haven't tried, nor have I thought of Botox. My parents and the AFB got me into a headache class at the Walter Reed Army Medical Center for Tuesday. After the class they do an evaluation of everyones headaches for their migraine clinic. The AFB and my parents are hoping that after the eval they will agree to see me. Typically they only see adults at their migraine clinic. Which is frustrating since I'll be 18 in like 6 months. Hopefully they'll come up with something! And hopefully I'll be in school tomorrow! Cross your fingers!
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