Sometimes the patient moves ahead...

I'm not going to sit and wait anymore. Four years of head pain every day of at least a 6/10 is too long to play this game. I'm active in my treatment plan and he can be on board or not.

I probably looked like a child ready to throw a tantrum but I didn't care yesterday and my neuro ophthalmology appointment. I sat there with my NO who shows no emotion, no change in tone, as I listen to him tell me that after the botox for headaches consult (which is still two months away) that he thinks we can start tapering on my Diamox because I'm not showing optic nerve swelling as much.

No! Don't get me wrong, I hate everything about those stupid pills and I would be happy to be off of them. Maybe ecstatic except the head pain hasn't gotten better. I have gotten worse from when I restarted it. In fact, my vision and head pain were worse yesterday. But that made no difference and neuro can deal with it.

Wrong! we were going to deal with it right then. I'm sick of neuro pushing me to NO then NO pushing me back and everyone saying that it's all good on there side.

No! I'm not going to just sit here and hope for the best when I have watched a dozen IHers in the past couple of months who went to bed with what was normal head pain and never wake up again.

No! we are working on a new plan and he's either on my team or he can be off it! It's a new year and I've spent years trying everything all of my doctors want and then going to their mental evaluations when that med that works with everyone doesn't work of me. Every mental eval says I'm fine and the med just didn't work.

This was my post on facebook just after the appointment and sums it up pretty well...

I flipped out a little at my neuro opthamologist appointment today and I'm okay with it.

If you know me, you know how much I get passed back and forth between neurology and neuro opthamology. Its always the other sides issue not theirs.

Today, I had enough. While I'm listening to my NO tell me that I'm fine because theres no visible optic nerve swelling. I took a deep breathe and said, you know that you don't need any visible swelling to have high pressure right? He said he knew that do I said why are you dismissing symptoms then and talking about decreasing my med?

After a little flipping out, scaring a resident and presenting some IH facts, we now have: - a head CT and spinal tap on order - news that my arguing with the health system may not have been in vain because they are working on making an IH specific department with Neuro, Neuro opthlamology and Neuro surgery on one place. - my neurologist may be a good headache Dr but he's not who they send IH patients to - my NO doesn't normally schedule spinal taps but if I want one all I have to do is ask - if at any time ive had enough of exhausting options before surgery, he will send the Neuro surgeon referral for shunt surgery

I swear this man spoke more today after I flipped out than he has in every appointment the past year combined. He actually showed emotion instead of his normal non smiling, reciting result in a monotone voice.

Score one for the patient today

Score one for the patient!

#intracranialhypertension #InvisibleIllness #braindisease #headaches #IH #IH #IHLife #IHAwareness #blog