Відео

Hello I am from india I m diagnosed with iih and had lumbar puncture also to test the csf pressure, i also have pulsating sound ony left ear from 3 years, i am 23 , please help me with any remedy.

Exactly how i feel right now for whole month. Hurricane season and living in Florida

I completely agree. I’ve learned this the hard way. You have done a great job of explaining this. Thank you!

I was diagnosed in 2001 at 11 with Cerebral pseudotumor. Im 35 now. I have Lupus, severe anemia, pyroderma gangrenosum, and IGA deficiency. People hear me say pyroderma gangrenosum and immediately say, "OMG YOU HAVE GANGRENE?!?!" 🤦‍♀️No i didnt say that... 😅Unfortunately all these things kind of feed off of each other and once one of my dominos get knocked down it snowballs. I wish there were more compassion and empathy in the medical field and the general public.

Thinking of you !!

Yes, thank you!!! I dread the question each time my Dr asks..."how long have you had this migraine?" I really want to say, "You've known me for 10 years, don't I say EVERY time they never stop...there is NO break? That it's gone on so long I could not truthfully tell you I remember the last time it DIDN'T hurt?" But I know they are trying to help & I'm grateful for even a few minutes of lowering the pain. So I give this answer too...that I really can't tell anymore.

What solution do you think would work so that people that have already tried all possible "solutions" and have already received all advice they could get to try those possible "solutions" to not be pestered with unhelpful advice... But at the same time, the other people that haven't already been given all the advice and possible "solutions" they might need to try, and they don't already know of, can still receive said advice? Maybe we should swap places. You'll see how no one offers you any advice, feedback or requested help/advice. It is worse.

I can tell this was taken on iPhone

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Hii Ashely I am from India. My husband had recently diagnosed with IIH. He is on medication now . But he stills feel the same heavynes and the same symptoms as before. My query is about is IIH patient can be able to feel normal like before the problem. How long it is going to take for recovery

Hello Ashley, I watched your old clips and the amount of change and success you have truly achieved. You are an example of patience and perseverance. You are a great warrior. I am 19 years old. I was diagnosed with IIH a year ago and had many surgeries, all of which failed. Now I am in treatment and I have a small group on Facebook in which there are many young girls with this disease. I want to take some of your advice and experiences with the disease and translate it into Arabic so that the members of my group on Facebook can benefit from it. Can I do this?😊

It's hard to explain all of the emotions as I head into my final full week of work this week but things are definitely starting to become more real especially after getting these supplies and doing other prep courses. I'm really excited to document this process not only for myself to look back on but to hopefully give some hope to my fellow chronic illness fam that life with chronic illness can be fulfilling even when it feels like everything is falling apart. I'm so thankful to be in this position and thank you for watching.

I was diagnosed at 5 years old I remember this was probably around 4 years ago or 5 years ago or something I remember one day this was a couple years after I was diagnosed I remember waking up in the middle of the night I was on the top of my bunk bed and I felt really sick and I had the worst migraine and I tried to get down the ladder and go to the bathroom but just threw up right there there was barley a break in between I was throwing up I kept throwing up and up for a really long time then my mom took me to the ER or Ed I don’t remember which one the I spent around 5 to 6 days in the hospital and they did a bunch of tests they didn’t know what was going on and they did a mri but they still didn’t know they tested me for Crohn's disease and it was negative and I was still throwing up a lot at the hospital and they but a iv in me I think ether the 1st or second day in the hospital till this day I’m still a mystery I’m now 12 I’ve had it for 7 years there’s a Neuro-ophthalmologist coming to the hospital I go to soon hopefully I can get in with him I am going to get a MRI and MRA done soon and it’s my first time not being asleep for it

How long did it take for the furosemide take to lower your csf and how did your symptoms decrease over time? And also did it lower it by a good amount? Please let me know id really appreciate it thanks.

Did the headaches ever go away?

How are you now? Are u still on medication?

How did you go in remission?

Thank you so much for sharing your experience. I have been diagnosed myself for about a month with IIH. Do you have a recommendation about what brand or type of pillow works best for you and your pain? Like you, I get a sore spot on the back of my head and nearly always have the ache in the occipital region, as well as a stiff neck. I am thinking that being propped up while sleeping might be good to help encourage draining of CSF? I don’t yet have a stent or any other surgical intervention, which may be coming depending on the results of an upcoming lumbar puncture. Thank you so much, and I wish you the greatest success in your continuing studies-you deserve it so much after all you have gone through 😊

اتمنئ ان تكوني بصحه جيده انا شخصت بهذا المرض عندما كان عمري 18سنه قبل سنه من الأن مع العلم انا ذكر ووزني خفيف جدأ أجريت 6عميات جراحيه خلال 8اشهر تحياتي 😊

Same last time I got a blood test my hand was shaking uncontrollably and the nurse said stop shaking it is nothing 😭😭I have really really bad needle phobia

God bless hope you feel better

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?

This vlog was so much fun to make and edit and hope these get more interesting once I am actually in classes. If there's something you want me to show you, please let me know! ☺

Thank you so much. I’m just finding these tonight. Going for a brain scan tomorrow, very nervous but this gives me some hope it’s not a tumour.

Ashley you are your own authentic self, unique, free thinking and an independent individual. You value life and you honour your loved ones whether they are your family or your friends. Hang on to your hopes, your dreams and above all do not conform to the expectations of others. Let your own light shine bright and follow that!!

I’m sorry that people say these things to you.

I had to do all of these things for them to find out I had IIH it sucked but I’m glad they found out I had it🥲

I was really happy to see your latest video that there will be some good news that it has been vanished completely now but its not. I also diagnosed with IIH 2months back. My journey just started. I appreciate your decision your videos really give me confidence.

Good Luck with the study Ashley, love the setup. The sit-stand desks are a life changer.

You briefly mentioned having a low pressure headache in this video. What would have given you a low pressure headache rather than high? What’s did the low one feel like?

How is your life after 5-6 years of living with IIH, did the symptoms go away? And do you still need any medicines on a regular basis?

thank you!!!!!!!!i have been diagnosed with this and everyone would always tell me there just headaches get over it but no one but us understands

Or they just brush it off and say Oh its just a headache! So frustrating and disheartening...Ive stopped explaining it.

Did you hqve wny chronic migraine.in.tue body fir me up per body armpits now bi headache nowdays anyone else?

Same here im in the military and its effecting my carrer for any jobs hope you get better

Hi Ashley! I'll tell you the same thing I tell Z - don't worry about it - do what feels right in the moment, and those who have an interest in your content will see it when they see it. I see so many UA-camrs burning out because it becomes a profession or business for them, not a passion, and there's so much competition that they are always under the gun to make more and better content in an endless race for competition for clicks. F* that! Seems like you have a healthy attitude about it already though! :)

That's Idiotic

Accurate, and there is not enough info out there about it... Personally, I just feel exhausted and even "dumb" at times during my postrodrome... Like my normal cognitive function wont come back for at least two or three days... As a full time professional it is a b*tch.... Kudos for the Video, greetings from MX

Hey my sister is suffering from iih and now it’s been 1 year and her surgery has been done her optic nerve is dryed because of iih can you please tell me that how much time it takes to recover from severe iih

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Thanks Ashley ❤

Thanks for sharing ❤

Thanks for sharing ❤

Hey , did u go into remission with tablets + weightloss?

Hey i am glad i found your channel is the lumbar puncture too painfully? Did u have any side effects?

How did u push through the fatigue to lose weight and exercise more?

I suffer from chronic migraines for 25 years. They started out as episodic and quickly morphed into chronic migraines. They have literally affected every aspect of my life. My family is really supportive.