IIH/PTC Not new..been awhile since I've been on here
I am saying or thinking these at least 2 or 3 a day. It took from 2004-2016 to get a dx. l would love to tell you how after all the procedures, Scans, eye tests,and Specialists, I am in remission. No. I am not a candidate for shunt placement. Surprise! I didn't want one. But, I also didn't know of any other treatment option other than Diamox, which at 750mg twice a day caused extreme leg pain. Plus add the tingly, painful medication,
#Topamax every time the dosage was increased. (did I mention the horrible painful tingly in my face, hands, legs/ feet #BrainFog . Some days I had to have help out of a chair. Imagine doing that at a funeral for husband's side of the family?(who ,some have already told you how they feel about your illness...a sign of weakness) My father-in-law looked at me and walked over to help me stand up. He was close to 40 years younger than me that day...most days.
This above isn't even the most uncomfortable on.
I end up reading everything I could get my hands on. From case studies (yes,real ones.) To calling Johns Hopkins because they have a CSF center, and they were one of the 1st hospitals in do studies and place Stents in 12 patients with IIH/PTC. To NORD's website, including clinical research trials ,and many more.
I ended up on the table 5x's and 2 venous sinus stents all between 2016-2017.I don't have to guess anymore about what happened to me. I know what happened.
I got sick, really f sick, and not many believed how sick I was. Except for one Specialist,he did . He never gave up on me.
I don't think I fully understand him when he said something about letting the brain rest,and it probably wasn't best if we tried to go back in there. In case we caused me any problems. Already had TIA and one stroke after the left stent. Nothing he did. It's the way my brain is. I'm an odd duck. And I wasn't wrong about my brain not being right after surgery and medications. Many days my brain still hurts, my ears and eyes feel like they are going to bleed.
I suppose the reason for this post is it has taken my family, my career, friends, memories, lifestyle, and more, interesting enough as much as it has taken from me,.in the last 6-7years IIH/PTC made me think and
Understand how important it is to let your brain rest,and reset. It may take you in a completely different direction alone
Please remember, from one odd duck who did it the hard way, when you are going through the same thing in your head over and over, stop. Yes, IIH sucks, blows AND so many other things.
You do not. You didn't cause it, You didn't ask for it, and holding it inside makes it easier for you, me, we,us...to excuse people who think "that illness is a weakness". Also, you,we,us,y'all, me when we listen to the bad brain talk..we are not healing. I still have bad brain talk days. I feel like up blank creek without a paddle ,if you get my drift. I hope my rambling reaches a few of you.
Have a pain free day ✨️ 💙💚💙💚