My Advice for People Newly Diagnosed with IIH

Hey everyone! In today's video I give my top advice for those who have just been newly diagnosed with idiopathic intracranial hypertension (IIH). Even though this video is specific for IIH, it could really apply to anyone with a rare condition. Be sure to stay tuned until the end as I also give my insight into what I think might be behind what causes IIH, in my own opinion of course, as the cause of IIH is unknown.
Thank you to all my current subscribers for subscribing to my channel. I upload every Monday and Thursday and videos are live by 5 pm CST. Don't forget to click the notification bell so you know exactly when my videos are available for you to watch. Are you new to my channel? My name is Ashley Stuart. If you want to get to know me better, be sure to check out my "40 Facts about Me" video. I link this video at the end of all my new videos in case this is the first time you are seeing me. If you like what you see, don't forget to subscribe. I upload personal vlogs and show you what it is like living with idiopathic intracranial hypertension (IIH). On Thursdays, I upload science-related content. The final Monday of every month will be a special update on how I am managing my IIH. Don't forget to leave me a comment down below too. If you are new to my channel, be sure to follow me on Instagram and Twitter.
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Thank you to everyone who continues to watch my content and if you are new, I hope that there is something that you can relate to.
Disclaimer: This video is heavy in medical content. I am not a doctor. Please only ever get advice from your own doctor concerning your own health.

[@banpreetkochhar9010]

I am only 17 years old, or I am going through this disease, I have this disease in January 2024, or I am very worried that my eyes will not go anywhere, I have also had lumper puncture, medicine are continue but the symptoms are starting again. If I can't get better soon, my whole life will be ruined.

[@beckyduncan3164]

Hello, i am new to iih as i was diagnosed with this disease in January of this year. I had a emergency spinal tap and pressure reading was 42, i had stent placement surgery a few weeks later, i have to go have two more stents placed. Thankyou for this channel as this disease is still new to me as im 31 and a mother of 3 children. And yes this disease is very isolating and kinda depressing. But everyone stand strong. I hope for a cure soon.

[@AshleyStuart]

Thank you for taking the time to share your story! Good luck with your next two stents!

[@beckyduncan3164]

@@AshleyStuart Your welcome, this journey is a hard one with all the uncertainty that lies ahead, but i have faith things will get better. And thankyou for replying to my comments

[@TirzaAfterWLS]

I am thinking I may have had this for a while. Officially diagnosed this Saturday. I have been getting anxiety attacks for the same amount of time as the headaches (over 2 months) I told my Doctor I actually believed I had a hormone issue at one point. I appreciate your video.

[@AshleyStuart]

Thank you! I actually kind of get sad when I hear that someone is newly diagnosed with IIH, but I hope that this channel can provide a bit of comfort in knowing that you are not alone.

[@TirzaAfterWLS]

@@AshleyStuart I am so new that I haven't even seen the neuro ophthalmologist yet. They just give me OTC meds or other meds in the ER and it doesn't help. In fact my first ER visit they gave me an occipital nerve blocker because the tendon in my neck was tender and my neck hurts terrible. We assumed it was occipital neuralgia. I had a bad go with that about 5 months ago and was going to PT for it. I thought the needle would work because right away my left eye pain went away. But it made everything worse 😪 I am so glad I had emailed my primary Doctor and she suggested going to the eye hospital. If it weren't for that they would just continue to treat this as a migraine due to my past right frontal lobe surgery in 2002. I can understand why it would make you sad. I have 4 kids and my youngest has been away with my friend. I am unable to take care of him like this. My heart is broken. Sorry writing so much. This is so new and I am bugging out. I wish I saw your video first. The advice of not searching the internet would have been helpful 🤣🤣🤣

[@puny5417]

I’ve enjoyed this video. Thanks. And this is néw to me and you’re informing me more than my doctors. 💕💕 Praying for a cure and have a pain free day!!!

[@lorimenshew2033]

My daughter was just diagnosed with in the last2 months… idk if pain throughout the body is part of the diagnosis…does anyone else have body pain?

[@AshleyStuart]

I had excruciating pain in my leg muscles. I had my mom massage them for me almost nightly. There was some achiness in other muscles too but my legs were some of the worst pain I’ve ever had.

[@lorimenshew2033]

@@AshleyStuart Thank you so much, I asked the doctor they gave me no answers…

[@banpreetkochhar9010]

Please give me some suggestions , how can i cure my self , i don't want my life spolied

[@614Hunydip]

Have you done any research on a natural cure?

[@AshleyStuart]

Unfortunately with IIH there is no cure. The only thing that’s possible is treatment. In my opinion, lifestyle changes and weight loss are both great ways of helping manage symptoms. Remission is possible for some with these changes but everyone is different.