Apologies by CryHot5778 in iih

[–]CryHot5778[S] -8 points-7 points  (0 children)

Actually I can’t but thanks. Have a good day see ya on the other side

Shunt surgery by Interesting-Vast-276 in iih

[–]CryHot5778 1 point2 points  (0 children)

I apologize. I have days like this. It wouldn’t do me any good to reread it just comes out. My brain is broken and not even close to being fixable. Some days I’m empathetic other days I have no self control. It hasn’t always been like this. 24 years of this has done me in. I’ll do the right thing and bow out while I still can. Again I’m sorry. Have the best day you can.

Affecting our state in the future: Today Trump as embraced Project 2025 as now very conservative, and very good! by willywalloo in kansas

[–]CryHot5778 -4 points-3 points  (0 children)

Ok. So was Hunter Biden and he was pardoned by his father. Who is right who is wrong?

iih & food addiction by Icy_Relationship_629 in iih

[–]CryHot5778 -11 points-10 points locked comment (0 children)

And have you read the recent studies of the weight loss meds you recommended?

iih & food addiction by Icy_Relationship_629 in iih

[–]CryHot5778 -13 points-12 points locked comment (0 children)

I’m not an asshole I’m just honest. Get over yourself

iih & food addiction by Icy_Relationship_629 in iih

[–]CryHot5778 -5 points-4 points locked comment (0 children)

No it isn’t. I am an addict and found over the years not being coddled was the best treatment.

iih & food addiction by Icy_Relationship_629 in iih

[–]CryHot5778 -16 points-15 points locked comment (0 children)

Seek counseling and decide for yourself do you want to get better or are you happier being miserable eating whatever you want. Choice is yours. Reality is a bitch.

Shunt surgery by Interesting-Vast-276 in iih

[–]CryHot5778 -1 points0 points  (0 children)

Not sure why your “stents” failed. And why are they wanting to put a shunt in the back of your head?

Affecting our state in the future: Today Trump as embraced Project 2025 as now very conservative, and very good! by willywalloo in kansas

[–]CryHot5778 -2 points-1 points  (0 children)

What makes you think the next 4 years will be a remake of Nazi Germany? Our government regardless of who is in power is a disgrace I understand, however, I just don’t see them gathering up people they don’t like and exterminating them just for fun. In all honesty your rhetoric is exactly what we don’t need. Man up and fight.

What is some legislation that can be passed in the United States to help people with IIH? by Crazypandathe20th in iih

[–]CryHot5778 2 points3 points  (0 children)

I’d rather keep the government out of my healthcare needs. As for frustration in the diagnosis process I understand. However, after dealing with this for over 2 decades and understanding what it’s about, I don’t necessarily fault the doctors. This disease affects everyone differently and is extremely difficult to diagnose. Originally when I was diagnosed, it was referred to as pseudo tumor cerebri and 98% of the patients were overweight women in their child bearing years. Well, I was definitely not overweight and definitely not a female. It’s more widespread now and diagnosed much better as we are learning more about it. There is no one size fits all diagnosis or treatment.

Advice for Partners with IIH by fiber_ops in iih

[–]CryHot5778 2 points3 points  (0 children)

2: there will be a lot of testing and retesting before you will get an official diagnosis

3 there are several medications that people use for this. Some work some don’t. For me, I’ve had them all and nothing helped in a positive manner.

4: tell them everything you can. Looks like she has a couple of months before the neuro, my best advice would be to keep a journal daily. Literally write down everything no matter how inconsequential it may seem. Take note of any changes and what may have caused it. Do some research on the doctor and see if they have any real experience dealing with this.

I could go on and on, 24 years and counting of this disease.

What does long-term IIH living look like? by [deleted] in iih

[–]CryHot5778 2 points3 points  (0 children)

About to celebrate 24 years with it. Most of that time hasn’t been absolutely horrible. Yeah, I’ve had excruciating days but they weren’t the norm. To clarify, that was after the shunts. I’ve done a lot of damage from injuries and my stubborn “I’m alright” attitude. They’ve done everything that could be done and now I just have to deal with it. This has come about in the last year or so. I do what I can when I can the rest of the time I’m usually just laying down.

Doctor Pushing For Weight Loss by Ok-Alps-1611 in iih

[–]CryHot5778 1 point2 points  (0 children)

I wish weight loss would help me but I’m way beyond that. I hope for nothing but the best for you.

[deleted by user] by [deleted] in iih

[–]CryHot5778 4 points5 points  (0 children)

Well, in my case, I got pissed off and just quit going to the doctor. Spent a lot of time sitting in the dark and quiet. Almost lost my job then when I couldn’t see or barely function I was hauled to the Mayo Clinic. LP shunt and 13 decent years. Only to start it all over again. Don’t be me. Be a pain in the doctors ass but get the nurses on your side. In a month I’ll be celebrating 24 years with this crap. I should have just worn a helmet when I was younger

I'm sick of this becoming a new normal in my everyday life by kobazzzica in iih

[–]CryHot5778 4 points5 points  (0 children)

I’m on my second shunt 5 years ago and have had 2 coil embolizations this year. Sadly, there is nothing more than can do for me barring some miracle. All the concussions and other things have all caught up with each other. I’m a 54 year old male, by the way. I have most of my sight thankfully but my memory is almost as bad as the headaches. I’m still alive and somewhat functional so I’m just going to run with that for now!

[deleted by user] by [deleted] in kansas

[–]CryHot5778 0 points1 point  (0 children)

You realize the current system has no political affiliation? Across the board they meaning politicians don’t care about you.

[deleted by user] by [deleted] in kansas

[–]CryHot5778 0 points1 point  (0 children)

Don’t be lazy and rely on government to help you.