Migraines

Does anyone else have migraines? I have been having really bad migraines and i don't know what to do to make them stay away. I am worried that if i keep having them they will cause seziers has anyone else who has had migraines had problems with seizers?

Edited September 27, 2012 at 12:52 pm

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Hi! I have a brain tumor in the brain stem, and have had several migraines a week since 1983. I have never had a seizure. I have tried many meds. I kept a diary of when I got headaches and found that birth control meds help alot, but not all the time. Best of luck getting yours taken control of.

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I suffer from very bad migraines, however havent had an experience with seizures. Anything from somebodys perfume or tuna can trigger them. The doctors told me i had to have an MRI scan which i did! nothing came back.

Go to your doctors and tell them, keep a diary of the migraine attacks. They should put you on tablets. I am currently on imigran/sumatriptan- when i feel an attack coming on, i take 1 tablet and it stops the attack from worsening! Hope this helps :)

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I have a lot of migraines too. I have tried for years to make a cause-and-effect reason for what triggers them. Keeping a diary is a very good idea but sometimes they just grab you with that iron grip for a reason that you just can't figure out. The pain at the back of my head near the axis feels like a bomb exploding and I vomit repeatedly.

I've never had a seizure but both of my children did. My daughter without NF, who is now almost 29, had petit mal seizures for years when she was young and was on neurontin from the time she was 6 tll she was 15, at which time she no longer had them and the neuro. doc. said I could wean her off. My son who had NF had grand mal seizures that were pretty severe, but were mostly controlled with meds or a combo of meds. He rarely ever complained of a headache, but my daughter without the NF has a lot of pretty bad ones.

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If you do not have an NF specialist, I would highly suggest getting under the care of one to determine the cause of your migraines and the best way to treat them. If you need a physician referral you can email me directly at kwalshcurtis@nfnetwork.org. Please include where you live.

Thank you!
NF Network

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I'm not really sure if that was meant for me or not but I just thought I would post that I had an MRI in May. It was with contrast, specifically to try to locate a recurrent pheochromocytoma, but my head was included in the scan and the neuro. dept. at WVU was aware that I was having the headaches. Unfortunately, I really don't have much of a medication plan, still trying to work that out. I am now on replacement dose cortef as I now have no adrenals.

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Forgot to say that there is a plexiform neurofibroma there at the axis where the spine meets the skull but it's not inside the brain stem, although it is pressing on some nerves. The pain radiates from there to the frontal area up over my eyes, most times I have it I would rate the pain a 9 on the "pain scale."

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Hi i have NF1 n suffer from migrains i know when i am going do get them tho as i get pains only on one side of my neck and it feels like its swollen and about an hour after that i get the migrain and it stays or hours n hours and sometime feel or be sick but when i told the doc's they say they dont know whats wrong and dont even say about my Nd i havent had a check up in a while either.

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Yep, I get them all the time. Stress, alcohol, MSG, fatigue, over sleeping, and the list goes on and on of what triggers them for me. Right now, I think its the stormy weather we have had lately. I seem to get more of them every fall. Keep a journal for sure, it really helps pinpoint what your triggers are. I get complex migraines...auras, lose feelings in my arms, sometimes speech goes a little haywire too. Sometimes I feel like I am hallucinating too.

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i 've suffered from migraines for years, tried many different treatments from my neurologist but nothing seem to be able to prevent the attacks. with time i have discovered that for me, small ammounts of marijuana before going to bed on a regular basis have greatly reduce the attacks ( from 3 times a week to 6 times a year). no i do not push the idea that others should do as i do, but for me. it made life much easier. i was living with a constent headache and now only have the occasional small migraines

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