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I Don't Even Know If It Is Migraines

Hi All,
I just stumbled across this site, and thought I would share my story on here because to be truly honest I am feeling pretty freaked out. Almost a year ago I started getting frequent headaches. I wouldn't say they were unbearable, but nothing I could take would make them go away. They would last for two to three days then go away on their own. No other symptoms, just dull head pain constantly. This would happen about once a month. Slowly they have become more frequent and intense. Now I have a headache every day. And I have begun to get other symptoms, like intense neck pain (the neck pain/base of my skull hurts worse than my head usually). Confusion. Lack of coordination. Nausea. Mood changes. My primary care doctor thought it was my birth control so we switched that several times but it had no effect. I have cut out dairy, gluten, caffeine, sugar. I drink an insane amount of water, exercise. I did go to the ER with one particularly bad spell and the gave me a CT scan (I had bad hand tremors that time) but nothing irregular showed. No one in my family has a history of migraines. I'm 30 years old. I have seen a neurologist who put me on Topomax, but so far no luck. What scares me the most is the rate they are accelerating. I never had auras, now when one is coming I go almost completely blind in my left eye or my vision gets completely blurry and unfocused. I get theses headaches 4-5 a week. Low pain usually, luckily, but lots of confusion and trouble concentrating so while I haven't had too much problem with missing work and school, I haven't performed very well in either.I just started graduate school,and I don't want to have to put my life on hold indefinitely to figure this out. Has anyone had a similar experience to me, and if so, what did you do?

  1. Hi Rovermier,

    Thank you for your post. We are so happy you found our community. I hope you are able to connect with others here. I am sorry to hear you are experiencing such debilitating headaches and associated symptoms, along with the frustrating experience of not being able to identify the cause or diagnosis. Please know we are here for you and we definitely support you. I am happy to hear you are visiting various doctors, even though you may not be getting the results you wish. Perhaps you could look into a migraine specialist? They are different than neurologists and may provide more assistance. The following two links discuss migraine specialists and provide information on how and where to find one -, Also, the following links will connect to general information (basics) about chronic migraine -, Apologies in advance if it is redundant as you seem very familiar with migraine symptoms, however perhaps you will find something helpful within the pages it connects you to. Furthermore, I felt you would be interested in the following articles -,, It sounds like you are experiencing fairly intense symptoms. Perhaps you will find a tip or trick in one the articles that would help ease some of them. Again, thanks for being a part of our community. Please continue to reach out when needed and keep us posted on your progress. We love hearing from you. Sending loads of good energy your way.


    Meaghan ( Team)

    1. Don't be afraid to look into other diagnosis like occipital neuralgia. You mentioned neck pain so I bring this up.

      Sometimes neck stiffness can be a part of prodrome of migraine along with none or a whole slew if other s/sx (smells, light, sound, bowel symptoms like constipation or diarrhea).

      But if you have had a neck injury it could be you have C2-3 median nerve branch damage or arthritis causing occipital neuralgia.

      If no prophylaxis is working, or especially if triptans dont work(ie maxalt, zomig, imitrex) you might want to ask your primary to refer you to someone who can rule it out.

      Good luck

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