I was also diagnosed when I was 11. I had none of the symptoms or characteristics of the illness. Thank goodness I went for an eye checkup!

@100subsciberswithnovideos4

3 жыл бұрын

I'm just wondering are do u still have it or has it settled down?

@mazo-hyst

3 жыл бұрын

@@100subsciberswithnovideos4 hi! i’m not the same person, but i have IIH (a more rare form because i didn’t get some symptoms like swollen nerves or headaches) but i’ve gotten surgery to correct my crossed eye. i have high pressure still and i still have IIH however i’m not constantly going to the hospital anymore and i no longer have a crossed eye or double vision.

@100subsciberswithnovideos4

3 жыл бұрын

@@mazo-hyst hello. I had symptoms of headaches and crossed eyes however they some how got corrected by themself without surgery. Right now my IIH has settled down although I'm still taking medication, I don't think I have high pressure in my head as much anymore. Its kind of weird for me to have it as it usually occurs in women and rarely occurs in Asians I am an Asian male.

@Wil_Dsense

11 ай бұрын

@@100subsciberswithnovideos4respect did you also has pulsatile tinnitus (hearing your heartbeat in the ear) I am a male a have most symptoms associated with IIH 😢 I’m glad your doing better now

My name is also chloe and I also have IIH and I'm 16, Literally the definition of "not alone"

@azimlikz3431

2 жыл бұрын

I was diagnoised with iih when I was 17 . I hope you are good :). Where are you from?

@Bxby_nyny

Жыл бұрын

@@azimlikz3431 i was diagnosed at 12

@azimlikz3431

Жыл бұрын

@@Bxby_nyny :( I'm so sorry for heard that , I hope you will heal :)

I was 16 when I found out, I’d been having the symptoms but I’ve always grown up believing that “you can just power through it, it’s just a headache,” then I saw the eye doctor and he saw it. I got referred, a bunch of tests later, and now I get a spinal tap every few years and meds. In my opinion, people don’t take this seriously enough. It is so debilitating, and the meds can make it even more so. I just wish there was a cure :(

@getbrite4516

2 жыл бұрын

Its nothing to cure because everyone brain makes this CSF fluid just sometimes it drains out and sometimes it builds up and don't drain fast enough so pressure builds up but something causes it we just have to figure out what

@daddydankmemes6260

Жыл бұрын

What symptoms were you having?

@acreARES

Жыл бұрын

@@daddydankmemes6260 it started out with a headache that would last for days, until it got to a point where it was either not as bad or can’t even see cause it’s pounding daily. I started to loose my vision around 18, my hearing started going shortly after. I would get random nosebleeds, always be tired, and get random fevers and heatstroke easily. Docs took an MRI and a ST, found no tumors but my pressure was 35

@daddydankmemes6260

Жыл бұрын

@@acreARES man that sucks. I developed visual snow syndrome about 2 years ago. I see tv static in my vision at all times. But I also developed excerise intolerance, heat intolerance and fatigue. My eyes feel weird and I get pressure in my neck and head. I don't have headaches but my neck gets very stiff. I'm wondering if this could be my issue. Not to mention brain fog and anxiety.

@acreARES

Жыл бұрын

@@daddydankmemes6260 could be, but only an MRI and spinal tap can tell. From what I’ve learned the main cause is processed food. When I eat purely handmade food, like making my own bread and staying away from meat, I get better

i have chronic migraines and iih, i’ve been in pain since i was 7 and finally 8 months ago they diagnosed me with both. I only had pain, weight gain, and high pressure, but no signs in my eyes. they only screen it by looking at your eyes so i could’ve been treated much quicker if they had listened to me. don’t always believe everything has to be the same!!

@wdymhoe

18 күн бұрын

Hey Hayley, how are you today? I feel kinda frustrated because I’ve had migraines with visual auras since I was 8. But then I started getting seizures in my teen years. Now I’m 19 and still have epilepsy but don’t have migraines that often. But my visual auras haven’t stopped. Sometimes it’ll just go full black for a minute, and I’m actually not overweight I’m really healthy, eat what I’m supposed to. But I just feel so lost. They put me on epilepsy medication, but my chiropractor said I have a subluxation. Basically my spine is kinda off. When I work out my ears get really clogged like I’m underwater. And my neurologist is no help 😅 I tell him these things and he just recommends more seizure medication. Sorry for writing all this but any recommendations?

Im an adult with IIH, it would be nice if they could coordinate drson the same days for all IIH patients, because it is a lot of appts!! especially when you get a surgeon involved!

I've had this now for a year. I lost 161 pounds and it went away. Then all of the sudden headaches are back. Now I'm back on the medication. My eyes are fine they just hurt sometimes.

@hidayahdae4822

4 жыл бұрын

Hi so it came back when u lose weight?

@kes9612

Жыл бұрын

Yeah same for me, I had it before my first child @140lbs (senior in HS) and even during my pregnancy (@267lbs) and even after losing over 100lbs after baby. it doesn't matter what weight im at I still have it but my eye Dr blames it on weight. I'm 5'5 very active and weigh 140lbs and am 33yrs old yet they blame it on weight or say well "if lose a few pounds or 6%" I'm like yeah I only see y'all once a year but the pictures of the back of my eye look the same every year ( or two) when y'all do this exam and I have been all over the weight spectrum during those times and I still have this diagnosis and now it's even worse and I've been consistently at a healthy weight for almost 15yrs now with only worsening of this condition. I'm on a mission to get down to 125lbs and have an eye exam, because I want him to tell me to lose 6%, I dare him. My primary never had even mentioned my weight besides to say I have done well to lose all my baby weight as most women NEVER do, never says I'm at risk or even brings up weight at all because it's not an issue for me. I'm done with my quack eye Dr and think I need a specialists because I believe all my problems stem from this issue that he hasn't even wrote down for me or really have a name for until today. He just always showed me normal pics and mine and said women f child bearing age who are overweight tend to have this, lose weight....blah blah blah well I told him I couldn't imagine how bad it looked when I was 267lbs while I was pregnant but of course I didn't have an eye exam at that point (it was early in 1at trimester of that yr). So that might be a commonality but it is NoT the only thing that causes this and just because you lose weight doesn't mean it will dissapear as we were lead to believe. We are proof of that

@acreARES

Жыл бұрын

@@kes9612 When my first doctor told me that, I told him he could take me seriously or refer me to another doctor. Thankfully this disease is rare enough to pique most doctors' interest, and threatening to go to another doctor usually gets them to take you seriously. Does anyone else have a very hard time losing weight? I was doing high-intensity cardio and strength training seven days a week, and the most I lost was 10 lbs over a year.

@fiobee7557

Жыл бұрын

@@acreARES Do you have symptoms of Lipedema?

@Wil_Dsense

11 ай бұрын

Hope you’re doing better now. What medication are you taking dear? I also get aches and pains behind eyes and neck and pulsatile tinnitus. I am not diagnosed with IIH but it seems like it is most likely as it describes all the symptoms.

Now im 22 and I’ve been having small symptoms. Doctors gave me 1 medicine that i have to take 3 times a day. But they told me that the issue can be solved only if I lose weight.

@getbrite4516

2 жыл бұрын

Hi did u ever loose weight how's your condition now

@acreARES

2 жыл бұрын

Omg same! I did loose weight too! I lost 30lbs and nothings changed! It’s made it easier to manage the meds, but I still get intense headaches every day. #1 thing that makes it worse is drinking a lot of caffeine

@getbrite4516

2 жыл бұрын

@@acreARES do u try changing your diet watch your salt intake reduce stress and go walking

@acreARES

Жыл бұрын

@@getbrite4516 I did try that yeah, but it never worked. Sleep and darkness are the only two things that help my symptoms. It’s so unknown that often my doctors know less about it than I do

@kes9612

Жыл бұрын

Y'all I've had it since I was 17 and been all over the weight spectrum and still have it. I went from 130lbs which is very thin for my build (fam says I look sickly at that weight) all the way to 267lbs while pregnant and lost over 100lbs back down to 135 or 140 within a year of having her and still had this every single year on eye exam. It has only gotten worse (my pics from previous yrs to now). I have stayed consistently between 135-150 no more than that for 15yrs now (she will be 15 in may) and they still blame this on my weight. Whether I'm big or small I still have all the symptoms and headaches, whooshing in my ears, always had nosebleeds since I was a kid and nothing has changed that weight wise. I don't think I could get any more active or slimmer without it adversely affecting my health and this already makes me feel crummy enough so I couldn't even imagine.... The weight thing isn't a magic cure like the eye drs act like it is, yeah it may help some but not ALL and I'm still not convinced it has anything to do with it. If it did it seems as though people would notice a change. I know one thing my regular mds have never even brought up my weight or had concerns about it (after I had my child of course& lost the weight) so it just perplexes me as to how every eye Dr brings this up first thing whether they are dealing with an obese patient or not. Blows my mind, I feel like I am being called far @130lbs @5" 5 with a very athletic build and bigger muscles in my arms than any chick I know. I do physical labor every day, I'm not in bad shape. I think anyone who has lost weight and still has issues needs a second opinion because it's not right

I was diagnosed with IIH for a year now. The doctor is still monitoring my condition. Any advices?

I’ve had this for 17 months straight from being taken off a medicine too fast. It gets worse and worse. I’m no longer able to care for myself or son. Pressure in my head is unbearable.

@CaramelSlidin

6 ай бұрын

I have pressure in my head so bad. It's worse when I lay down sometimes.

@Carolina_girl86

6 ай бұрын

@@CaramelSlidin mine is non stop 24/7. I’m so ready to call it quits and no one will help me.

I was diagnosed in July this year I'm on medication azomid but i fell dizzy all the time no stop they doctor told me to lose weight I'm trying but not easy 😢😢😢

What everyone is not understanding is this is a rare neurological disorder. It is very different from regular high blood pressure. I take 1000mg of meds in morning and night for the IIH which like the Dr said in the first of the video most know it as puesdotumor cerebri and have had 3 spinal tabs to drain the excess fluid off my spine and brain to relieve the pressure.

@priyankapandit78

4 жыл бұрын

How many spinal tab are done in iih ?

@missyhardee5994

4 жыл бұрын

@@priyankapandit78I've been diagnosed for 3 years and I've had 3 spinals but its just different for everyone.

@priyankapandit78

4 жыл бұрын

I think I need to have spinal tabs once more .one thing more my weight keeps on increasing with severe lower back pain .

@tonyarobinson8200

11 ай бұрын

I think I need me another spinal tap I’ve had 1 so far and found out about the condition in January 2023

I think I have had ICH most of my life. I told my doctor about it when I was about 28 and he dismissed it like I was crazy (this was over 40 yrs ago). Yes, I have had problems with obesity and diabetes. Even my local eye doctor dismissed my symptoms for some time until a scan showed swelling of the optic nerve. Then, I was referred to a clinic 100 miles away, put on acetozolamide 1000 mg per day. (another patient inthe waiting room said she was on 4000 mg per day, for a more serious condition - we were both in the university office of a neuroopthamalogist). My nerve swelling is down, but I still feel pressure in my head (brachial blood pressures are ideal) and "wooshing" as someone else mentioned. My lumbar puncture spinal pressure was normal, but the MD said she thought that was a false low measurement. I am still under treatment, perhaps heading into a medication weaning phase. (Jan 7, 2024)

I am going thru this now. I was punched in the head. My pressure was 22. The nuero didn’t think it could cause my blindness in one eye, but I’ve been tested for everything else! April 1st hope to go on some meds

i started having headache at the age of 18 i didnt pay much attention to it even tho the headache were very often and very tense, one day i went to get some eye tests done for new glasses and thats how i found out, around 10 years later after i was diagnosed, i started losing fluid from my left nostril, now im also losing fluid from my left ear as well, nothing i can do about it, i have many other serious health issues all hereditary, the least serious i have is blood sugar, im type 2 diabetic, and thats the least of my problems, i refuse to die at my late 30's i just wanna reach 60 or somewhere there, then i dont care if i die anymore, im doing my best to live my life the way i want, but surviving isnt living, the only income i have is 300 euros from the disability pension im getting, thats enough for the bills and the meds, if my parents werent supporting me i would have starved long ago, no matter how tough you think you are, of how much support you have, the body can only take so much pain for the life to worth living.

@Wil_Dsense

11 ай бұрын

I feel for you man. I’m in similar situation. 34 years old, life is miserable crying daily, I want to live also but not like this, pressure headaches and eyes, pains upper body and pulsatile tinnitus in right ear. May we be fully recovered from this by some miracle and let us be curED. Have you had diagnose yet and how are you doing nowadays man. Feel free to talk with me I want to help people also with this conditions

@abelj6053

11 ай бұрын

@@Wil_Dsense how doing now ?

@Wil_Dsense

11 ай бұрын

@@abelj6053 Hi thx for ask I’m doing somewhat better. I’m Taking medication for nerve /pain blockers (Gabapentin) which seem to be reduce intensity of symptoms. Whooshing sound in right ear has vanished after being constant for months which is amazing to me. However my neck on right side has pain like burning or swelling. So symptoms seem to change etc. But seen as the pulsatile tinnitus had gone it’s given me hope I can fully recover. Thanks again and hope you’re alright

@gawthamsibi470

4 ай бұрын

You are doing great already. More power to you.

I am nkt obese but i had a very bad head axhe and eye ache the lumber luncture was terrible and took alotof goes as i am toung then they put in anestetic it was painful i had never seen so many needles and i now have reagular blood testsxand i have one tommofkw

I wish mine was caught so early, the pain of retinal hemorrhaging is excruciating.

You may want to check for venous sinus thrombosis or stenosis. That was my root problem.

@charlotterasmussen4782

Жыл бұрын

Me too!

@ramo737

Жыл бұрын

Hey. What were the symptoms for venous sinus thrombosis or stenosis? I have iih since 1 month, my left eye is almost blind. I got a shunt 5 days ago.

I have the same illness

Hello there, I want to know if Hybetez Remedy, will work for me? I notice many people keep on speaking about this high blood pressure remedy.

it was discovered when i was 8. i am now 17 and i have been on medicine since then. my optic nerves are still swollen. I am not obese and it did not go away with puberty. they are unsure about the cause. i have had 3 spinal taps and they want to do a 4th to see the next steps ...

@nikkienchanted

4 жыл бұрын

I have such swollen eyes it hurts so bad

@salmanalltheway

4 жыл бұрын

Malena Mascarenas hi Malena, what does it feels like?

@AutumnWaterfalls

3 жыл бұрын

🙏🏾🙏🏾🙏🏾

So people know midol helps the headaches. I stumbled onto this one night. I Think its because of the diuretic in it.

@No_Dior_Just_Christian

4 жыл бұрын

ShadyLadyBeauty it sure does!! *does a high five with you

I have recently been diagnosed with this condition. I had no symptoms and my eye doctor caught it in my yearly check up... I am not obese or overweight... On medication

@k.i.k.i5494

7 ай бұрын

@@amina2248 I am okay... lost some weight and regular exercise. Thank you for asking

Same and I was only ten !!

My mum had a stomach sleeve done to reduce symptoms but now, five years later, her symptoms are coming back. Does anyone have any tips?

I hear lots of people keep on speaking about Hybetez Remedy. But Im not sure if it is good. Have you ever try this high blood pressure treatment?

😢😢😢😢 my eye doctor caught this today I’m sad Please people do your checkup❤

Hi, could we get in touch. My mum is suffering from this condition. Please get back to me if u r the doctor

@prateekjaiswal7788

4 жыл бұрын

My mom is suffering too, did u already started treatment

Anyone develop Metamorphopsia after being diagnose with iih ?

Hi..I have been diagnosed with iih but I treated it immediately the problem is I still have double vision for 3 months now

@Sarah-qp1qp

2 жыл бұрын

Hi, did your double vision go away?

@abhilashasingh5149

2 жыл бұрын

Same issue Did it get resolved with time?

@Sarah-qp1qp

2 жыл бұрын

@@abhilashasingh5149 I have the same issue as well, My doctor told me my sixth nerve is inflamed that’s why I have the double vision, I’ve been on medication, Cortisone and Diamox and I did a spinal tap, I’ve been seeing some improvement with the double vision, I hope that helps.

@princessjasmine4973

Жыл бұрын

My doctor prescribed me Acetazolamide and it took away my double vision

@manishk1512

9 ай бұрын

​@@princessjasmine4973what happened to you

Is Hybetez Remedy effective to cleanse your high blood pressure issue inherently ? We have read a lot of good things about this high blood pressure treatment.

Does Hybetez Remedy really work? I notice many people keep on talking about Hybetez Remedy. But I'm uncertain if it's good enough to treat your high blood pressure issue inherently .

My 24 year old sister is in hospital due to Intracranial Hypertension from pfizer vaccine

@Brittany-gl3us

2 жыл бұрын

Omg I knew it ever since I took that vaccine

@Brittany-gl3us

2 жыл бұрын

Can you give an update on how she is doing now

@Bkay2240

2 жыл бұрын

@@Brittany-gl3us She survived now she has POTS syndrome and can't work.

@angelapena5801

Жыл бұрын

I have iih due to Covid 2020 7 months ago did the weight loss surgery, one month after start leaking brain fluid out of my nose now Jan 20 getting a stunt to help this

@qweenb3767

11 ай бұрын

That's weird because IIH literally means "no cause"

I have intercranial hypertension and I take 12 pills a day lol

@lydiahernandez4605

7 жыл бұрын

same...

@rorolove7421

5 жыл бұрын

sam kneeel how did y get diagnosed ?

@rorolove7421

5 жыл бұрын

U*

@littlemissmichele9254

4 жыл бұрын

Yeah my daughter took an unbelievable amount.

@annemariemathews9040

4 жыл бұрын

Wow 12 and I’m complaining about taking 4 🙈hope ur better xx

Please come and experience The Breathe Deep Environment Chamber . . . O man . . .!!!!!

why does the patient need to see a psychologist for this？

Weight is 4 :10. So stop that stigma !!!!