Hi everyone...here's my story. I'm afraid it might be a rather long post, I hope you can bear with me. This all started on May 3rd, 2008, I was 37 years old...a single mom, with 3 small kids (9,7,4) and a (most of the time
) wonderful boyfriend with twin boys (7), a great job, completely "health conscious" and training to do my first triathalon. I woke up that morning (May 3rd) and I felt "off", my head ached right on my left temple, very localized. I have NEVER been a headachey kind of person so I thought it was strange. About 1 p.m. that afternoon, I felt like a MAC truck slammed into me, I didn't know what to do with my head the pain was so bad. I took some ibuprofen, which I next to never do, which did nothing, held an ice pack to my head...the pain let up after about 90 minutes...only to keep coming again...and again. By the next morning, we were in the ER. They sent me in for a CAT scan...normal, sent me home with an arsenal of drugs (as you get to know me, you will know I am a doc's worst nightmare when it comes to meds, I'm not compliant at all, especially when they are trying to give me something to just mask pain...I believe, I must be in pain for a reason and let's treat the reason not the pain...of course, that is what makes this condition so hard). Anyhow, they concluded that I was having a tension headache. I didn't know alot about headaches at that time so I just went home. The pain continued...luckily the ER nurse who knew me, because I work at the local HS her son attends, called her ex who is our local neurologist. A few days later I was in that office...I was then sent in for an MRI and MRA, suspected pituitary tumor...results negative. Only enlarged pituitary. Then another call from neuro that something looked funny about an artery...sent in for a CT Angiogram (not pleasant by the way), seems my left vertebral artery is occluded but apparently that can not be the cause of the pain says the doc. Anyway, still in pain. Doc puts me on tramadol....does not a thing but make me sick and dizzy and STILL in pain. More visits to local neuro prove fruitless, he doesn't know what this is...puts me on indomethacin (24 hour release), didn't do much but tear my tummy up.
I was then referred to to UCSF...Dr. Goadsby. He actually rubbed me the wrong way AT FIRST, I was trying to tell him what I was feelin, but I think I was being to ellaborate and he just wanted the facts, so he kept stopping me from talking. (if you've read this far, you're probably thinking that is not all that shocking
) Turns out, he thought something might actually be amiss with my pituitary and my new symptom of my loss of peripheal vision didnt' set well with him. He refered me to the pit specialist at UCSF and said I should have a formal testing of my visual fields.
It's now November, my pituitary is functioning normally. I do have something going on with my retro-bulbillar pre-chiasm optic something or other. I have been referred to the neuro-opthamologist at UCSF, I go back on Dec. 4th.
All I know is that this pain has not stopped. I have had a couple of week or so breaks but since September 10 I have not had one break. Every day, it's here. Sometimes it only lasts 20 minutes sometimes upwards of 2 hours. Anwhere from 3-11 times a day. I told my mom that the only way I could describe it would be if someone cut into your temple, peeled away the skin then stuck an ice cube in there and sewed you back up and you had to just endure it all till the ice cube melted...like that freezing hot/cold kind of feeling...I feel there is no getting away from the pain. Like a poor dog trying desperately to shake off fleas... just no getting away from it.
So...Dr. Goadsby says that if the neuro-opth. can't find anything we are going to treat this as Trigimenal Autonomic Cephalgia...cluster headache...I researched that and this is how I found all of you. I have to say that I do almost with there was a tumor in my head that they could just pull out. And then I would be better. My whole entire world is upside down, I have lost so much...all the things that made me happy, running, cycling (exercise is a trigger), seeing momma in pain scares my kids, my relationship is suffering because I feel like sometimes he just doesn't get it and I want to rip his eyeball out so maybe he will get it (just dramatizing but you know!), my job...they made me go out on medical leave till this gets figured out.
I'm a mess. I was picking up my little guy from preschool the other day, and *it* smacked me, the pain took my breath away, if it werent' for my 4 year old in the back seat I think I would have just run my car into the logging truck coming the other way. I just want this pain to go away.
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