14 Years of Suffering and Counting

Last updated: March 2013

I have suffered daily, what I call “Sinus” migraines, since between my 4th and 5th Sinus Surgery 15 years ago. I never had headaches or migraines ever before this.

These, as many of you know, are debilitating. On a scale of 1-10 my daily migraines are usually between a 6-8 level. I’ve lost jobs for not being able to work full time, was unemployed for 3.5 years. I was denied disability even though I figured I can work up to 30 hrs a week, but who wants to hire a person they can’t rely on day-to-day? I suffer memory loss, fatigue, confusion, depression, a serious drop in self-esteem.

I did go back to my Sinus Surgeon (Ear, Nose & Throat Specialist) when they started happening and I also went to University of Penn as well as a few different neurologists over the years. My current neurologist is saying to me you’ve taken everything offered for migraines, even tried Botox with no success with the unwanted side effect of double vision (which I am still dealing with) nothing has worked for any period of time, you’re just going to have to live with these for the rest of your life. (That is better than what he used to tell me which was to pray and meditate!) I experience these every single day of the year, maybe I will have one or two days a year in the 2-3 range of pain. I’m only just turned 45! We are talking since the age of 30 — and I don’t remember my 30’s at all…

I did finally get a job back in July of last year, it is full-time. I have already taken at least 8 days of sick time/vacation due to the migraines and I have the kind of boss who doesn’t understand or like us calling out sick (even though his wife also suffers from them). I get 5 sick days a year. Once I go through them I plan on taking unpaid days because I only have 2.5 left for the year. It’s not worth taking vacation days for, I need those.

I did contacted John Hopkins Headache Center in December 2012 for a complete analysis, but the earliest they can get me in is August 2013! At least my appointment is with the head of the department.

I have all the classic symptoms — sensitivity to light, sound/noise, irritability around others, aura’s, worsening depression, despair, loss of faith in anything and everyone, and also extreme fatigue. And since January of this year have developed panic/anxiety attacks for the first time and they freak me out!! I’ve had anxiety but never the attacks before. Weather changes also severely affect me, we have a storm front moving in tomorrow and I could tell two days ago.

I just read Glehe’s story and that could almost be me except I have normal to low blood pressure so his solution wouldn’t work for me.

A couple weeks ago I decided to try Acupuncture for the 2nd try (1st try was awful - the acupuncturist was more into selling natural medicine for $300 than the acupuncture itself), this time it had a great impact and my pain level dropped for a 2-3 for over a week, but my double vision came back. I have talked to the Acupuncturist and she thinks she knows which needles are affecting that area and wants me to try it again using different pressure points. I’m scared, the reactions are sometimes worse than the relief.

So now I see an ENT Specialist, Allergist, Neurologist, Eye Care Specialist and an Acupuncturist. I am keeping my appointment go to John Hopkins but really have not hope for a solution there, and that’s another day off to drive there. And it’s getting expensive even with health insurance, I took a big pay cut with this new job, but what choice did I have? All my MRI’s and CAT scans come back clean, blood work is fine.

I am really trying to keep the current job I have, if I go it is because they fired me. I really like this job and the people I work with. It’s given me back a little bit of the self-confidence and worthiness I lost. Now I am also trying to come to terms with the fact I will probably suffer these migraines for the rest of my life. It doesn’t look like a good life from my end!

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