My story….

I was diagnosed with Clusted HA about 7yrs ago along with migraines and given Topamax. I started to lose weight and my dose was lowered then but my neuro left the area and I found a new dr and my symptoms also changed too. I was given depakoteto help with my weight issues. I was down to 112lbs at 5’9″. My new Neuro I have been with since that time. He has worked with me, found a pituatry tumor that has shrunk, and worked with me through countless ups and many downs. I was up to 1500 mg of depakote, 200 topamax, and started having horrible shakes.

I could barely eat or hold anything with my hands, my body was shaking inside and out down to 750 depakote and now on 120 inderol with the topamax to control my migraines.

2 yrs ago I received a shot for another medical issue and my cluster ha came back full force for a yr. I had nerve blocks for a yr every few months. 7 total. last yr my migraines went chronic. now I receive botox but it only works for about 2months and my insurance allows for the injections for every 3 months, so I receive nerve blocks a month before to help with the pain until my next botox appt. This treatment helps since august of last year somewhat but since the last injection mide June I am not doing so well. I have been on o2 already this past week 2 times and my neck (where I am most sensitive) is very painful. I try to work full days as best I can, I have FMLA thank goodness and a wonderful supervisor that understands me and my condition but no one else at my work does. I am highly sensitive to perfumes and oils and working with all women some of whom tend to spray air fresheners and perfurmes in the restrooms. I have complained many times over the years but to no avail.

I know I cannot have white cheese or alcohol. I limit MSG and stay away from artificial sweeteners. Those are triggers for me. Weather changes always get me. I get at least 7 hrs sleep each night. My neuro has asked me before what I think we should do. He hasn’t given up on me, but I know that he is baffled at times. When I want to give up on a treatment he reminds me that we have’t given it long enough to see if its working.

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