Occipital Neurologa Migraines - a.k.a. Occipital Horn Syndrome

by Jennifer

Well I have had migraine since about 1997 on and off. I am currently a 29 yr old female from NJ. Over the past 3 months they have become debilitating, I am no longer working as a dental assistant, which I have done for 7 yrs. I am married, we've been together for about 4yrs. No kids. He has already seen me through ovarian cancer in 2009, I am well and over that! : ) I do suffer from mild epilepsy and mild depression since 1997 (high school years) also.

I take Topomax on a daily basis which is for seizures in conjunction for migraines 200mg a day. It works well for seizures NOT for migraines at all. I have been taking Zoloft 200mg for about 4 yrs & have found it not to work either. I have recently taken that DNA swab test which matches you to medication, so apparently Zoloft is not a match for me and Effexor is. So I am switching.

Back to migraines, over the past 3 months it has been non-stop searing pain. I was diagnosed with occipital neuralgia on the right side. Why or how? Who knows!! I have tried the following to no avail: heat, ice, lots of sleep, little sleep, lavender oil, quercetin, co enzyme, B12 , skull cap, feverfew, butterbur, magnesium, multivitamin, Flerexil, Zanaflex, Fioricet, 3 occipital injections, 1 supra injection, a 6 day steroid pack to calm the nerve, Imitrex, lotion no. 10 numbing cream, drinking lots of water until I had clear pee, acupuncture, chiropractic, changing my diet - no caffeine at all. I never really drank soda or coffee. No chocolate. I tried upping my protein, even though my blood tests said my vitamin levels & blood counts were normal, blood pressure is very good. I am happy about that.

So what in the world is causing it?!?!? Yes my body mass index is over, I am a bit on the heavy side, certainly not obese. Larger woman, but tall, and honestly asking many of my Doctors "do I need to lose weight if all my blood levels are fine?" and their answers being "no, not unless you are unhappy with how you look". I also have lost weight to try & help but that didn't either!

Any hows, so where has taking all these different pain pills left me? I don't take them unless I have to. I know how they work, all of them just lead to having to take more and higher doses. My biggest fear is becoming like my father who was addicted to pain pills for his back. The small amounts I have taken to dull the pain have left me tired and unable to do basic tasks. My mind, these past few months I have become a monster, flying off the handle at the smallest of things my usual self would just brush off. I have hit a wall, a window, and threw down a fan. These things are not me. It is the constant pain causing anger in me to lash out at I can't even remember what. I am also suffering short term memory loss. But the scariest is this sudden blind rage. I am not mad all the time I just feel extremely guilty for these 'moments' I do have.

My husband is truly wonderful and my best friend. So my next step is my pain management. My Doctor wants to 'burn the optic nerve' further down, I believe its called a rhizotomy. This does cause a numbing of one side of ones' scalp. The procedure is a series of 3 injections done under twilight anesthesia. Sometimes this nerve grows back. Sometimes it grows back fine, sometimes with pain. Out of 200 patients my Doctor has had only 1 in which it ever grew back, and in this particular patient it did cause pain again. So you would just get it 'reburned'. I have looked everywhere online for videos on this procedure, it's very frustrating the lack of understanding & overall information available to people. Well I have a numbing test next week to see if I qualify for this rhizotomy in the first place, if I don't well.... well now what else? (I hope this all made sense I wrote it with a migraine!)

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