I am 12 now and I’ve had headaches for 10months now. I had a MRI and we are going to travel to my countries neurology specialists on Monday. Because of my age, the doctor usually tells me to go out the room while he speaks to my parents but I never get told the truth. She’s heard something from the doctors and won’t tell me abt it so I’ve decided to do my own research so when I see my scan I can check to see what it is. My mum also had IIH and it was very severe. She lost her vision temporarily and had a stroke. It’s a horrible illness and I wouldn’t wish it on anyone. It’s shocking how cruel some ppl can b. Many ppl leave me alone when I can’t walk and laugh at me because I have to wear sunglasses. I hope not many ppl hav to suffer like this🙏❤️
I had the same thing occur with me. I was diagnosed 3 years ago and the circumstances were the same. Also, now that I have a shunt the neurologist states I should no longer have headaches.
Backstreet Homestead i got diagnosed when i was ten had no symptoms was like 70 pounds and lost 15 during medication and that was 3 years ago and i still weigh like 80 pounds and my doctors say that i was just losing it naturally. i lost 15 pounds in a month. how is that natural😂😂
Once again the stigma of being overweight is used as a default diagnosis. It took me almost 3 years to get my Cushings disease diagnosed, it causes extreme weight gain in some. Sometimes there is a medical reason for weight gain.
Yes. My stomach got upset after firsr covid vaccine . I suffered one month bad stomach and headache. So i had to eat only white rice bkz no medicine working. So i gained 10kg weight. So after second vaccine i got fever then iih. Doctor used emergency lumbur puncture for protect my eyes. But told me to loose my weight. But similar case happened two 2 more person. I Don't know why they shutdown their mouth.
I went from 420 lb to 210 and was having systems. At 200 I was diagnosed. Due to hysterectomy I gained to 240 and went into remission for 4 years. Stress was the thing that started my major pain and journey. Not weight. Stop the stigma.
Stress and autoimmune issues started my journey with IIH. I’m 54 and weigh 160 lbs. I don’t think obesity is always the reason. Every BODY is different. My beautiful sister in law was over 250 lbs and was the healthiest person I knew until Covid took her before Christmas 2021.
Weight loss works in different ways with different people. Some are better off and others worse. We are all different however weight loss doesn’t require having a stent or shunt put into your head with surgery... so professionals will encourage weight loss before surgery options.
I have constant heat pressure and headaches every day. I did have surgery on my neck for stenosis 9 years ago. I was told if I didn't do it I would end up a quad.
Yes. I to have an adjustable bed. I’ve noticed sleeping at an angle has helped me a lot. So I go into my media room often to sleep in theatre chairs. Which is horrible. But my neck Is bad and I have arthritis in it. I’m only 31 and dealing with this is annoying. I’m think of going to the chiropractor
It took me years to figure out that intracranial pressure was my problem. I have no money and government insurance doesn't give me any doctor worth a damn.
Same with my son, even though we are willing to pay out of pocket, which I did, for help. However, he’s on Medicaid in Michgan, and can’t see any good doctors! It’s such a corrupt shame!
I’ve lost 40lbs and my vision, tinnitus, pressure and pain is worse than ever. If I laughs too much it immobilizes me from the pain inside my head and I feel like I can’t move. My original state at time of diagnosis is more preferable at this point
Omg if I laugh too hard or sneeze to hard or cough too much or exert myself at all my head pounds so bad. I just got diagnosed after years of saying something is wrong and trying so many meds that didn’t work. But I thought I was the only one who gets a headache if I laugh.
I have this disease and I’ve noticed that my headaches flare up more when I’m on my cycle but I have noticed since I’ve been working out more. My headaches this month were not as bad like my cycle started on Friday so I had a headache Friday and Saturday and then today I was just waiting for like the medicine to get out of my system. I don’t really do well with the medication I have noticed when I do work out and I do a low carb vitamin a diet no dairy I’m vegetarian, no milk, no meat my exit and work out like I’m post to three days a week for an hour and we trade my headaches to wonderful, but I do have a question for the doctors. Why when you diagnose someone what I eat you go to the extreme and put them on medication
i’ve seen multiple doctors, and been told i have all the symptoms with a larger blind spot which i was told cause be caused by pressure, then completely saw a different doctor 2 days ago and was told it was anxiety??? like excuse me i’m in agony most of the time.
I have this condition, I have lost weight and my headaches have gotten worse. I started out when I was 18 at only 110 lbs when this disease started showing signs, but it was written off/misdiagnosed as migraine's. I do have a shunt and my vision keeps getting worse, double vision, blurred vision and light sensitivity. Weight loss does not cure this for everyone and not everyone that is obese has this condition. I know several people with this disease that are not overweight at all and never were. Truth is Dr's do not know what really causes this disease and they still do not know how to properly treat it. Not every person is text book the same which makes it even harder. (But how can you really define text book for a disease that strikes only 1 in 100, 000 ) This disease has varying degree's to it. I am now 46 years old and still suffering.
i’ve personally had this for almost 3 years (tomorrow is my 3 year anniversary) i had a mri one day and i was immediately rushed to the er once the results came in to get a spinal tap. i am one of the few people who aren’t overweight and actually underweight. when i went on medication i lost 15 pounds in less that one month weighing 75 then dropping to 60. luckily i didn’t have many symptoms, and it has calmed down so much. and i have had no vision problems since i have been diagnosed. i’m just happy that it had calmed down lol.
maggie that’s the same meds I’m in. Do you also get a tingly feeling on your hands/feet? They just increased my to 500mil and a few hours after I took my meds I had the worse pain ever... it felt like thousands of needles just torturing my foot. I literally started crying. I’m scared of continuing the medication
@@djarias28 I am from India I am also facing same problem I am taking dimox from last two years my condition is stable at a point neither improving nor getting worse
Diana Arias yeah i did when i was on it, they took me off because nothing good was happening and i was just throwing up every 10 minutes and my hands and feet were constantly tingling. ive been fine since ive been off it so far. but that’s probably because i have no symptoms of iih its self except for my mri and spinal tap results.
I developed iih after taking a prescribed medication that specifically says do not give to patients with previous head injury. I was never given medication to treat the pressure issue, they did two lumbar punctures, screwed up the second one, still to date need a blood patch because the surgery for the blood patch was the same day last year they started suspending what pennsylvania called, non life threatening appointments. At this point my right eye is so sensitive to the touch that it feels like it's about to pop out of my skull and the headaches are so severe that it's debilitating. I wish there was some way I could come see you guys for treatment. The eye issues, headaches, pulsating tinnitus and so on is absolutely unbearable. Oh and because of the lack of treatment I have been told I have developed two lesions on my brain.
I lost weight and my symptoms did improve. Less headaches and no more swelling in my optic nerve. I'm also tapering off of Diamox. We caught the condition quite early I believe. I was a diet soda drinker, I feel like all the aspartame I was consuming may have contributed to the condition, I have 0 proof of that, but it did help when I left that shit alone.
I was diagnosed through a spinal tap. I had no symptoms other than occassional headaches. The optometrist noticed my optic nerve was slightly swollen and my peripheral vision wasn't up to par. My pressure 75 which I was told wasn't too high. But, I started off on 1000mg it had to be increased to 1500 even while I did lose the weight. The ringing in my ears and the headaches persisted After the increased dosage and the weight loss the swelling in my optic nerve went down. I have yet to do another spinal tap (that was hell) though. I was told that the condition mimics a tumor. Not that my brain thinks it has a tumor, I interpreted as the pressure was causing the symptoms and signs that tumor does. I was obese, obviously you weren't. I don't think a whole lot is really known about the condition. We're pretty much the guinea pigs. I was told that it occurs mostly in overweight women. Definitely tapering the Diamox slowly and possibly may need stay on it, headaches and ringing in the ears have returned in the last few days. Will be contacting my neurologist.
Hi ma'am , r u fine now? How much time it will take to get recover from this illness as I m also suffering from the same for the last one yr. I always have headache and it's killing me. Doctor doesn't say anything except it will go by itself. I m also having diamox, no swelling now and lost 15kgs. Pls pls pls help me.
I had braintumor (neurocytoma) intraventricular,and hydrocephalus. Which created papilo edima. Peripheral vision loss and lolttle blindness inbrighteye,and sence of smelling loss. The neurosurgeon removed tumor and made me survive by gods blessings. Is there anyway i could improve my vision? My optic nerve is slightly pale on right side. The papiloedima is gone now too.
@Meenakshi Jat hi my left eye has improved better in last few years, right eye is ok... but cant rely much, but still has improved. Still a black shadow in right eye. Left eye and reading ability improved.
when my mother found out that she had it it was too late, already had open a tiny hole in her nose area and brain fluids leak every time she tries to do home work or stressed emotionally i also got it too but i started medicines before the same thing happens to me , my issue is i cant do anything i have to not lift weight bend over turn around my head fast work out even walking over 200-300 meters is a challenge and ending up having huge headaches so i just have to not eat much because i cant burn it . i also have ear and eye issues and hypertension makes things so much harder since with all the above i mentioned if i also get stressed emotionally i have about 80 % of hearing loss and cant hear nothing. even earbuds don't help at this point, i was valuated and granted disability pension with 80% heavy disability and i am 32 and i have to live with 300 euros (400 US dollars) per month this is how much they pay in Greece for heavy disabled people. sorry for the long comment i had to say it somewhere i hope you guys have it better than me i wish you all the best with what you are dealing.
Can IIH show greater symptoms when laying flat as opposed to being upright? Currently being undiagnosed, I suffer from imbalance and dizziness/vertigo but when lying down to sleep it exacerbates my symptoms. I see slow flashes of light that radiate from the back of the eye to the front and the feelings of pressure in the head increase. This leads me to positioning myself upright as I sleep instead of laying flat. My lumbar puncture came back fine. An ophthalmologist says there is no pressure behind my eye. I do have pressure in my ears so most physicians want to focus on the middle ear instead of IIH or autoimmunity.
I have small woosh noises in my head, i am 14. I searched about it and i readed that it was iih please share you'r experiences with me i am really scared about it
Small wooshing noises in your head is what is known as "Tinnitus" it also takes the form of high pitched noises or ringing- it is a symptom of IIH i also experience it alot- but it also could be something else or something small. but don't worry too much- just ask your guardian to get you to a doctor for a quick check and they can hopefully advise you better 💫
@@Tinyteacher1111 ok here it is. I know most people know fasting is good for you but I’ll bet most don’t know how good. ruclips.net/video/RuOvn4UqznU/видео.html
As atrophy occurs sometimes from a swollen optic nerve, how do you view this when a patient already has atrophy? Specifically... my extremely rare history. I had bilateral RB was treatments with 23 radiation treatments. Left eye was also enucleated. I am constantly told that I can be lumped in with the number of patients with IIH without optic nerve swelling. I have had many LPs with OP of about 25-36. Not very high, but enough that the pressure(not migraines) disrupts daily life. More to this, but with my history I am a person that loves science. My retina specialist and prior pediatric ophthalmologist believe that with an atrophy that my nerve can’t swell. I personally know that the peripheral test isn’t good as I have adapted to having one eye and deep set eye sockets that my results are average but true reality being that I rely heavily on peripheral vision due to the atrophy and vision loss in my central vision. Lol. A subject I can go in about. Just curious about your views and/or experience. :)
Why 16 year old was diagnosed with this today and that thank you for explaining it in a way I could understand! Only thing is my daughter isn’t overweight.. she’s tiny but weight gain from fluids recently
My 18 year old daughter has been diagnosed with iih after a referral from a routine eye test! She doesn't have problems with her vision but a lumbar puncture diagnosed iih high pressure does iih always affect the eyes?
@@providenceswedish we don't have a care team! Still waiting for follow up appointment from December.. her medication was doubled..I ring mri manchester but she's on the waiting list..bizarre!!
@@anjanaprasad3165 oh wow that's interesting. i got diagnosed yesterday but since i am already on medication for other things, my meds can just be altered if i am not improving. since it's only 5kg they might not be concerned as it isn't a dramatic increase but maybe try get an appointment with your doctor if you feel you aren't getting any better or if you are concerned:)
I have increased intercranial pressure with a spinal tap of 27! At one point it went down onto my optic nerves almost forcing me to go blind, now I have swelling again.
I have pounding pressure filled headaches everyday, and I hear swooshing noises in ear every night especially. It started in 2021 after an ear infection wouldn't go away. I'm still waiting on a spinal tap. It's definitely affected my quality of life. I don't feel great, I definitely think I have IIH.
I believe I am dealing with IIH since my #2 moderna covid vaccine in June. Done lots of tests but have to see a neurologist next. It never goes away and when the pressure is bad is debilitating.
There is no for sure cause to iih. That’s basically what the idiopathic part of iih means. I’m no doctor but I highly doubt the vaccine has anything to do with it if what your feeling is iih. I have it. I have a shunt as well. Going on almost 5 years with it now. They finally figured out that I had iih after a lumbar puncture along with an mri of my head.
That’s rubbish about weight loss, I lost weight and my symptoms worsened. The reason I have IIH is due to a vein in my brain not growing properly. This will not leave if I lost weight. Only the reconstructive surgery will solve this.
depending on what type of changes ( an organic structural dysfunction or functional dysfunction.) If it is functional then weight loss will help. If it is the organic changes then only operation will help. What patient has to do is follow the doctors recommendation. Get monitored regularly so doctors can take a close attention and analysis and differentiate the diagnose in order to treat patients.
Korpsem Same here! I had the condition when I was at the gym & losing weight & probably from a supplement I took that might affected the brain. Did you operate the surgery??? Please update :(
They think I have this but they won't stop blaming the weight. 1) this started before I gained weight. 2) the weight gain is medication based that I've only just been able to get off. They just won't listen to me, the weight gain could have made it worse and I understand that but I doubt that that's what brought it on
I have had pseudotumor cebri for over 11 years now and it's only gotten worse. My job fired me in and underhand way due to me having this condition because they blamed my health for the reason they were laying me off and I never once complained about my issue. I have been trying to get Medicaid for this issue but they want give me Medicaid pending Social Security adminstration decision on whether are not I am actually sick because I'm not 55 years old and only 39. I recently had my 5th spinal tap since 2013 last month. Today my head was hurting so bad it basically drained my energy causing me to go to sleep without even knowing I had went to sleep. Diamox doesn't work good anymore and medicine I was taking I can't afford due to no insurance no job no Medicaid and no help from Social Security adminstration helping me, so basically I'm just a sitting duck in pain often and with no more doctors care after a decade of treatment and Neurologist visits I can no longer afford thanks to my employer firing me in an under hand way saying I'm a liability to their company. If anyone reading this could be of any help to me I would greatly appreciate it but if not thanks anyways for taking the time to read this.
I was “laid off” as well. I have a similar story as yours but thankfully my spouse is still working to keep me on their insurance. I work in a right to work state and they “let me go” only 9 months into the new job because I missed two weeks due to severe vision difficulties that I NOW know to have been due to IIH. I couldn’t see my own hand clearly in front of me…how was I going to see my computer screens? If people have never walked a day in our shoes they can be uncaring & cruel. Hard work doesn’t count to them… just a body in their seat. We all break down sooner or later and I hope they never have to go through the stress, pain and suffering they inflict on those in need, are less fortunate or experiencing health issues.
Have you been to a functional medicine practitioner? They can do tests for this to find the under.ting cause. Mine was from breast implants and mold toxicity. The implants made me so sick for almost 13 years until someone mentioned this to me. It was living hell! Still is 4 years after my explant. Now, my son’s is from mold toxicity, 3 types of tick-borne infections, and Covid that sent him through the roof. Heavy metals, unhealthy diet, mercury fillings, latent infections, etc, can all be culprits.
Lyme disease may be the cause. Idiopathic means they don’t know, so check for Lyme disease. It can’t hurt to check, and may prevent an unnecessary shunt if diagnosed.
Yes!!! My grown son has three Lyme co-infections because of mold toxicity that allowed it to manifest. He then got Covid in January (It’s now mid-May.), and his head pressure went through the roof! No one has diagnosed him with this because we can’t find anyone to take this seriously, except the specialist that diagnosed his stealth infections and gave him meds to get rid of the Bartonella and Babesia that he may have had since age 7, when he had meningitis. This poor guy hasn’t been able to fit into society in the right ways because of head traumas, so he became an addict, but isn’t now. No one will give him pain meds because of this, although he’s been sober for 3 years. He’s been to the ER twice, and they said he’s fine and sent him home! He’s bedridden almost every day and I’m trying to take care of him and assure him that his symptoms will go away soon with the medication to kill the Lyme. It’s been months, and he feels absolutely horrible every day, all day. He would take his own life if it were painless. I’m doing research, and trying my best to make sense of this. I’m 67, and he’s been living here for almost 2 years because his father has not had his house remediated from mold. I’m doing the work of housing both of them, getting mold remediation done with essential oils by a professional architect and mold remediator. Essential oils will make the dead mold non-toxic. The fact remains that even his neurologist, who is supposedly very good, doesn’t know what IIH is! This scares me that our medical professionals in Michigan don’t have a clue about these things.
@@Tinyteacher1111 my family member kept testing positive for Lyme, but the Western Blots were all negative. It ended up being a very rare brain cancer: Diffuse Leptomeningeal Melanocytosis. If you are not getting answers, it can’t hurt to go to Northwestern in Chicago to their Oncology department to hopefully rule out cancer, but if it is cancer, then you will have some idea of what is happening. Best of luck, I hope things go well.
I have IIH and I am surrounded by cocky neurologist and other wise idiots - because I’m black this took 10 years and being accused of being a junky - hunting pain pills - before I could get help. I have to find something or I will die in my sleep I’m sure of it most of my issues happen when I’m sleep
So I'm being seen for my iih the doctors say it's mostly patients who are female overweight well I'm male and not overweight I've had four lumber puncher fluid opening pressure over 40 everytime now I have to have a shunt 😮
Has anyone who had double vision because of IIH and taken Acetazolamide (Diamox) and can tell me when they noticed improvement? I’ve only been taking them for a few days but my double vision isn’t getting better (maybe even worse?) and it’s really stressing me out. I really fear going blind :(
Mine are still not the same and I’ve been on the meds for 3 weeks. I’ve been told it can take up to 6 months for the condition to “stabilize” on medicine.
This guy is missing the point, what causes this problem, I have these symptoms and more, I weigh 120 pounds it’s not a weight issue, I believe it’s from neck instability, as soon as I get some extra money I’m going to CARING MEDICAL INSTITUTE they treat this problem with PROLOTHERAPY and of course Medicare won’t pay for it.
I get this sometimes when I smoke weed usually after a night or series of nights of binge drinking and it has caused things from vision changes to numbness in the left side of my neck and upper back and I can even tap on my neck and feel the cord wiggle in my brain lol, fun stuff...
I am 12 now and I’ve had headaches for 10months now. I had a MRI and we are going to travel to my countries neurology specialists on Monday. Because of my age, the doctor usually tells me to go out the room while he speaks to my parents but I never get told the truth. She’s heard something from the doctors and won’t tell me abt it so I’ve decided to do my own research so when I see my scan I can check to see what it is. My mum also had IIH and it was very severe. She lost her vision temporarily and had a stroke. It’s a horrible illness and I wouldn’t wish it on anyone. It’s shocking how cruel some ppl can b. Many ppl leave me alone when I can’t walk and laugh at me because I have to wear sunglasses. I hope not many ppl hav to suffer like this🙏❤️
I'm sorry to hear about you and your mother. I hope you're doing better now ❤️
I’m so sorry to hear that 😟 I hope you are doing okay and better 🤍🍀❤️
Prayers🙏
I had symptoms THEN gained weight THEN was diagnosed and told it was because I was overweight. Riddle me that.
It was the same for me. I probably sat at around 22% body fat when I was diagnosed. I was running every evening and then BAM....
You probably have secondary. Got it from trauma or a medicine
I had the same thing occur with me. I was diagnosed 3 years ago and the circumstances were the same. Also, now that I have a shunt the neurologist states I should no longer have headaches.
Backstreet Homestead i got diagnosed when i was ten had no symptoms was like 70 pounds and lost 15 during medication and that was 3 years ago and i still weigh like 80 pounds and my doctors say that i was just losing it naturally. i lost 15 pounds in a month. how is that natural😂😂
Same here!
Once again the stigma of being overweight is used as a default diagnosis. It took me almost 3 years to get my Cushings disease diagnosed, it causes extreme weight gain in some. Sometimes there is a medical reason for weight gain.
Yes. My stomach got upset after firsr covid vaccine . I suffered one month bad stomach and headache. So i had to eat only white rice bkz no medicine working. So i gained 10kg weight.
So after second vaccine i got fever then iih. Doctor used emergency lumbur puncture for protect my eyes. But told me to loose my weight. But similar case happened two 2 more person. I Don't know why they shutdown their mouth.
I went from 420 lb to 210 and was having systems. At 200 I was diagnosed. Due to hysterectomy I gained to 240 and went into remission for 4 years. Stress was the thing that started my major pain and journey. Not weight. Stop the stigma.
Stress started my journey too.
Stress and autoimmune issues started my journey with IIH. I’m 54 and weigh 160 lbs. I don’t think obesity is always the reason. Every BODY is different. My beautiful sister in law was over 250 lbs and was the healthiest person I knew until Covid took her before Christmas 2021.
I very much appreciated Swedish doctors. Brilliant job. Many thanks.
Weight loss works in different ways with different people. Some are better off and others worse. We are all different however weight loss doesn’t require having a stent or shunt put into your head with surgery... so professionals will encourage weight loss before surgery options.
Anyone else have constant head pressure/neck pain from the moment they wake up everyday?
I do...I changed my mattress and bought an adjustable base and still no relief
I do everyday
I have constant heat pressure and headaches every day. I did have surgery on my neck for stenosis 9 years ago. I was told if I didn't do it I would end up a quad.
Yes. I to have an adjustable bed. I’ve noticed sleeping at an angle has helped me a lot. So I go into my media room often to sleep in theatre chairs. Which is horrible. But my neck Is bad and I have arthritis in it. I’m only 31 and dealing with this is annoying. I’m think of going to the chiropractor
@@marywolfe6598 what’s a quad
It took me years to figure out that intracranial pressure was my problem. I have no money and government insurance doesn't give me any doctor worth a damn.
TranscendentalTunes Same with you
i’m 18 and was in the hospital my whole 4th grade year and every dr i was give was shit
Move country
Same with my son, even though we are willing to pay out of pocket, which I did, for help. However, he’s on Medicaid in Michgan, and can’t see any good doctors! It’s such a corrupt shame!
I’ve lost 40lbs and my vision, tinnitus, pressure and pain is worse than ever. If I laughs too much it immobilizes me from the pain inside my head and I feel like I can’t move. My original state at time of diagnosis is more preferable at this point
Love your pic!
Omg if I laugh too hard or sneeze to hard or cough too much or exert myself at all my head pounds so bad. I just got diagnosed after years of saying something is wrong and trying so many meds that didn’t work. But I thought I was the only one who gets a headache if I laugh.
I have this disease and I’ve noticed that my headaches flare up more when I’m on my cycle but I have noticed since I’ve been working out more. My headaches this month were not as bad like my cycle started on Friday so I had a headache Friday and Saturday and then today I was just waiting for like the medicine to get out of my system. I don’t really do well with the medication I have noticed when I do work out and I do a low carb vitamin a diet no dairy I’m vegetarian, no milk, no meat my exit and work out like I’m post to three days a week for an hour and we trade my headaches to wonderful, but I do have a question for the doctors. Why when you diagnose someone what I eat you go to the extreme and put them on medication
i’ve seen multiple doctors, and been told i have all the symptoms with a larger blind spot which i was told cause be caused by pressure, then completely saw a different doctor 2 days ago and was told it was anxiety??? like excuse me i’m in agony most of the time.
I have this condition, I have lost weight and my headaches have gotten worse. I started out when I was 18 at only 110 lbs when this disease started showing signs, but it was written off/misdiagnosed as migraine's. I do have a shunt and my vision keeps getting worse, double vision, blurred vision and light sensitivity. Weight loss does not cure this for everyone and not everyone that is obese has this condition. I know several people with this disease that are not overweight at all and never were. Truth is Dr's do not know what really causes this disease and they still do not know how to properly treat it. Not every person is text book the same which makes it even harder. (But how can you really define text book for a disease that strikes only 1 in 100, 000 ) This disease has varying degree's to it. I am now 46 years old and still suffering.
DreamWeaver Serenity are yours better when standing walking and severe when lying /sitting ?
do you drink diet soda?
I lost weight and got worse too. The problem was the medicine needed to be reduced to the new weight as it put me in ketosis I believe
i’ve personally had this for almost 3 years (tomorrow is my 3 year anniversary) i had a mri one day and i was immediately rushed to the er once the results came in to get a spinal tap. i am one of the few people who aren’t overweight and actually underweight. when i went on medication i lost 15 pounds in less that one month weighing 75 then dropping to 60. luckily i didn’t have many symptoms, and it has calmed down so much. and i have had no vision problems since i have been diagnosed. i’m just happy that it had calmed down lol.
What meds did you take? Cause the ones they gave me, idk I still got the same appetite. Just trying to eat healthier
Diana Arias i was on diamox, i was pretty young at the time so i had horrible side affects
maggie that’s the same meds I’m in. Do you also get a tingly feeling on your hands/feet? They just increased my to 500mil and a few hours after I took my meds I had the worse pain ever... it felt like thousands of needles just torturing my foot. I literally started crying. I’m scared of continuing the medication
@@djarias28 I am from India I am also facing same problem I am taking dimox from last two years my condition is stable at a point neither improving nor getting worse
Diana Arias yeah i did when i was on it, they took me off because nothing good was happening and i was just throwing up every 10 minutes and my hands and feet were constantly tingling. ive been fine since ive been off it so far. but that’s probably because i have no symptoms of iih its self except for my mri and spinal tap results.
I developed iih after taking a prescribed medication that specifically says do not give to patients with previous head injury. I was never given medication to treat the pressure issue, they did two lumbar punctures, screwed up the second one, still to date need a blood patch because the surgery for the blood patch was the same day last year they started suspending what pennsylvania called, non life threatening appointments. At this point my right eye is so sensitive to the touch that it feels like it's about to pop out of my skull and the headaches are so severe that it's debilitating. I wish there was some way I could come see you guys for treatment. The eye issues, headaches, pulsating tinnitus and so on is absolutely unbearable. Oh and because of the lack of treatment I have been told I have developed two lesions on my brain.
I lost weight and my symptoms did improve. Less headaches and no more swelling in my optic nerve. I'm also tapering off of Diamox. We caught the condition quite early I believe. I was a diet soda drinker, I feel like all the aspartame I was consuming may have contributed to the condition, I have 0 proof of that, but it did help when I left that shit alone.
I was diagnosed through a spinal tap. I had no symptoms other than occassional headaches. The optometrist noticed my optic nerve was slightly swollen and my peripheral vision wasn't up to par. My pressure 75 which I was told wasn't too high. But, I started off on 1000mg it had to be increased to 1500 even while I did lose the weight. The ringing in my ears and the headaches persisted After the increased dosage and the weight loss the swelling in my optic nerve went down. I have yet to do another spinal tap (that was hell) though.
I was told that the condition mimics a tumor. Not that my brain thinks it has a tumor, I interpreted as the pressure was causing the symptoms and signs that tumor does. I was obese, obviously you weren't. I don't think a whole lot is really known about the condition. We're pretty much the guinea pigs. I was told that it occurs mostly in overweight women.
Definitely tapering the Diamox slowly and possibly may need stay on it, headaches and ringing in the ears have returned in the last few days. Will be contacting my neurologist.
Did the diamox help you lose a lot of weight?
@@mrzg33 it did to me. It made me loose my appetite and I lost a lot of weight but gained it all after a year and now experience similar symptoms
Hi ma'am , r u fine now? How much time it will take to get recover from this illness as I m also suffering from the same for the last one yr. I always have headache and it's killing me. Doctor doesn't say anything except it will go by itself. I m also having diamox, no swelling now and lost 15kgs. Pls pls pls help me.
@@KHUSHSABESTIEN I've gained weight back, still no symptoms.
I had braintumor (neurocytoma) intraventricular,and hydrocephalus. Which created papilo edima. Peripheral vision loss and lolttle blindness inbrighteye,and sence of smelling loss. The neurosurgeon removed tumor and made me survive by gods blessings. Is there anyway i could improve my vision? My optic nerve is slightly pale on right side. The papiloedima is gone now too.
There are a lot of things on You Tube about this. Avoid sugar at all cost!
Hey did you get back vision
@Meenakshi Jat hi my left eye has improved better in last few years, right eye is ok... but cant rely much, but still has improved. Still a black shadow in right eye. Left eye and reading ability improved.
I was diagnosed with IIH and have no weight issues
when my mother found out that she had it it was too late, already had open a tiny hole in her nose area and brain fluids leak every time she tries to do home work or stressed emotionally i also got it too but i started medicines before the same thing happens to me , my issue is i cant do anything i have to not lift weight bend over turn around my head fast work out even walking over 200-300 meters is a challenge and ending up having huge headaches so i just have to not eat much because i cant burn it . i also have ear and eye issues and hypertension makes things so much harder since with all the above i mentioned if i also get stressed emotionally i have about 80 % of hearing loss and cant hear nothing. even earbuds don't help at this point, i was valuated and granted disability pension with 80% heavy disability and i am 32 and i have to live with 300 euros (400 US dollars) per month this is how much they pay in Greece for heavy disabled people. sorry for the long comment i had to say it somewhere i hope you guys have it better than me i wish you all the best with what you are dealing.
I am so sorry, I hope you are doing well or better. Stay strong and I wish you all the luck 🤍🍀❤️
what medicine you take
Can IIH show greater symptoms when laying flat as opposed to being upright? Currently being undiagnosed, I suffer from imbalance and dizziness/vertigo but when lying down to sleep it exacerbates my symptoms. I see slow flashes of light that radiate from the back of the eye to the front and the feelings of pressure in the head increase. This leads me to positioning myself upright as I sleep instead of laying flat. My lumbar puncture came back fine. An ophthalmologist says there is no pressure behind my eye. I do have pressure in my ears so most physicians want to focus on the middle ear instead of IIH or autoimmunity.
Does anyone have problems with balance with IIh ?
Yes i do
Me
Yes
Yes i do
Yes and I’m normally active and a prek teacher so I need my balance!! This is so bad
I have small woosh noises in my head, i am 14. I searched about it and i readed that it was iih please share you'r experiences with me i am really scared about it
I have had that since June when I got my moderna #2 vax
Small wooshing noises in your head is what is known as "Tinnitus" it also takes the form of high pitched noises or ringing- it is a symptom of IIH i also experience it alot- but it also could be something else or something small. but don't worry too much- just ask your guardian to get you to a doctor for a quick check and they can hopefully advise you better 💫
hlo sir my mother has the same problem..i want to know is she is taking the right medicine
My mum was put on diamox
I’m on diamox right now.
The weight is a copout and unfair.
I see many patients that are normal body weight.
Has anyone been on topirmate and diamox at the same time??? My
Pharmacist told to not take both together but my doctor is telling me to. Any thoughts?
Ask the doctor for a different medication
Do doctors simply not know about cranial blood pressure or is it another forbidden topic?
My son’s neurologist doesn’t even know what this is!
@@Tinyteacher1111 ok here it is. I know most people know fasting is good for you but I’ll bet most don’t know how good. ruclips.net/video/RuOvn4UqznU/видео.html
@@Tinyteacher1111 scary… time to look for a more informed physician.
As atrophy occurs sometimes from a swollen optic nerve, how do you view this when a patient already has atrophy? Specifically... my extremely rare history. I had bilateral RB was treatments with 23 radiation treatments. Left eye was also enucleated. I am constantly told that I can be lumped in with the number of patients with IIH without optic nerve swelling. I have had many LPs with OP of about 25-36. Not very high, but enough that the pressure(not migraines) disrupts daily life. More to this, but with my history I am a person that loves science. My retina specialist and prior pediatric ophthalmologist believe that with an atrophy that my nerve can’t swell. I personally know that the peripheral test isn’t good as I have adapted to having one eye and deep set eye sockets that my results are average but true reality being that I rely heavily on peripheral vision due to the atrophy and vision loss in my central vision. Lol. A subject I can go in about. Just curious about your views and/or experience. :)
Prayers fr all ur sufferings. Can understand every word u said. Take care🙏
Hi guys I'm new just diagnosed. Does anyone has IIH in combination with high blood pressure?
I do!
Hi guys how is everything going. Hope you feel a bit relieved. Thx for the reply.
Hi i do too! (it feels good to know that i am not the only one)
I have it too
How were you diagnosed? My son’s neurologist doesn’t know what this is!
Why 16 year old was diagnosed with this today and that thank you for explaining it in a way I could understand! Only thing is my daughter isn’t overweight.. she’s tiny but weight gain from fluids recently
We're happy to hear this video was helpful to you and your family! Thank you for sharing.
My 18 year old daughter has been diagnosed with iih after a referral from a routine eye test! She doesn't have problems with her vision but a lumbar puncture diagnosed iih high pressure does iih always affect the eyes?
Hello. We would recommend discussing your questions with your daughters care team.
@@providenceswedish we don't have a care team! Still waiting for follow up appointment from December.. her medication was doubled..I ring mri manchester but she's on the waiting list..bizarre!!
I'm left to Google iih every time I'm awake..
I recently got diagnosed with this. I gained weight once I started taking meds. Thoughts?
did they not provide medication to help with weightloss (if you were overweight to begin with)?
@@niamh3254 i wasn't over weight. I only gained about 5kgs. Thankyou for reaching out.
@@niamh3254 no meds post my diagnosis for anything.
@@anjanaprasad3165 oh wow that's interesting. i got diagnosed yesterday but since i am already on medication for other things, my meds can just be altered if i am not improving. since it's only 5kg they might not be concerned as it isn't a dramatic increase but maybe try get an appointment with your doctor if you feel you aren't getting any better or if you are concerned:)
@@niamh3254 I am sorry to hear that. Im sure you will be much better soon. And this phase shall pass. I am stable with my weight. So yeah.
Weight loss does not cure IIH.. I have heard it helps some people but I have lost over 25 lbs and my Iih is actually worse now.
I have increased intercranial pressure with a spinal tap of 27! At one point it went down onto my optic nerves almost forcing me to go blind, now I have swelling again.
Hello! If you need medical attention or have questions about your care, please contact your care team or visit the nearest emergency department.
I have pounding pressure filled headaches everyday, and I hear swooshing noises in ear every night especially. It started in 2021 after an ear infection wouldn't go away. I'm still waiting on a spinal tap. It's definitely affected my quality of life. I don't feel great, I definitely think I have IIH.
Update?
@@LizVanessasVibe Hey! So far they still don't know what it is, but I had the spinal tap. Spinal tap headaches are no joke.
I believe I am dealing with IIH since my #2 moderna covid vaccine in June. Done lots of tests but have to see a neurologist next. It never goes away and when the pressure is bad is debilitating.
There is no for sure cause to iih. That’s basically what the idiopathic part of iih means. I’m no doctor but I highly doubt the vaccine has anything to do with it if what your feeling is iih. I have it. I have a shunt as well. Going on almost 5 years with it now. They finally figured out that I had iih after a lumbar puncture along with an mri of my head.
Mine started when I got covid I had no vaccine
My son’s started to become non-stop when he got Covid in January!
covid and the vaccine can both cause CSF issues..Im struggling
Dr Eugene is this disease curable
That’s rubbish about weight loss, I lost weight and my symptoms worsened. The reason I have IIH is due to a vein in my brain not growing properly. This will not leave if I lost weight. Only the reconstructive surgery will solve this.
depending on what type of changes ( an organic structural dysfunction or functional dysfunction.) If it is functional then weight loss will help. If it is the organic changes then only operation will help. What patient has to do is follow the doctors recommendation. Get monitored regularly so doctors can take a close attention and analysis and differentiate the diagnose in order to treat patients.
Korpsem Same here! I had the condition when I was at the gym & losing weight & probably from a supplement I took that might affected the brain. Did you operate the surgery??? Please update :(
They think I have this but they won't stop blaming the weight. 1) this started before I gained weight. 2) the weight gain is medication based that I've only just been able to get off. They just won't listen to me, the weight gain could have made it worse and I understand that but I doubt that that's what brought it on
Is there anyone who had recovered from this illness?
@@charlottereid5326 what is your story? Treatment? Diet medication?
Asking as my wife has IIH
I've been diagnosed through an MRI with Idiopathic intracranial hypertension
I have had pseudotumor cebri for over 11 years now and it's only gotten worse. My job fired me in and underhand way due to me having this condition because they blamed my health for the reason they were laying me off and I never once complained about my issue. I have been trying to get Medicaid for this issue but they want give me Medicaid pending Social Security adminstration decision on whether are not I am actually sick because I'm not 55 years old and only 39. I recently had my 5th spinal tap since 2013 last month. Today my head was hurting so bad it basically drained my energy causing me to go to sleep without even knowing I had went to sleep. Diamox doesn't work good anymore and medicine I was taking I can't afford due to no insurance no job no Medicaid and no help from Social Security adminstration helping me, so basically I'm just a sitting duck in pain often and with no more doctors care after a decade of treatment and Neurologist visits I can no longer afford thanks to my employer firing me in an under hand way saying I'm a liability to their company. If anyone reading this could be of any help to me I would greatly appreciate it but if not thanks anyways for taking the time to read this.
I was “laid off” as well. I have a similar story as yours but thankfully my spouse is still working to keep me on their insurance. I work in a right to work state and they “let me go” only 9 months into the new job because I missed two weeks due to severe vision difficulties that I NOW know to have been due to IIH. I couldn’t see my own hand clearly in front of me…how was I going to see my computer screens? If people have never walked a day in our shoes they can be uncaring & cruel. Hard work doesn’t count to them… just a body in their seat. We all break down sooner or later and I hope they never have to go through the stress, pain and suffering they inflict on those in need, are less fortunate or experiencing health issues.
Have you been to a functional medicine practitioner? They can do tests for this to find the under.ting cause. Mine was from breast implants and mold toxicity. The implants made me so sick for almost 13 years until someone mentioned this to me. It was living hell! Still is 4 years after my explant.
Now, my son’s is from mold toxicity, 3 types of tick-borne infections, and Covid that sent him through the roof.
Heavy metals, unhealthy diet, mercury fillings, latent infections, etc, can all be culprits.
@@JustMe-oi9ms Jerks!
Does this help with a csf leak?
Thank you for this info
I’ve been experiencing pulsatile tinnitus from a young age and still having it now 😢
I had 3 days headache with dizziness and the pain is greater wheh i stand up
Thank you!
It’s nothing to do with being over weight!! Give it up! Even my doctors say that’s a joke. It effects anyone. X
You're at greater risk of getting it if you're overweight, but anyone can get it.
Lyme disease may be the cause. Idiopathic means they don’t know, so check for Lyme disease. It can’t hurt to check, and may prevent an unnecessary shunt if diagnosed.
Yes!!! My grown son has three Lyme co-infections because of mold toxicity that allowed it to manifest. He then got Covid in January (It’s now mid-May.), and his head pressure went through the roof! No one has diagnosed him with this because we can’t find anyone to take this seriously, except the specialist that diagnosed his stealth infections and gave him meds to get rid of the Bartonella and Babesia that he may have had since age 7, when he had meningitis. This poor guy hasn’t been able to fit into society in the right ways because of head traumas, so he became an addict, but isn’t now. No one will give him pain meds because of this, although he’s been sober for 3 years.
He’s been to the ER twice, and they said he’s fine and sent him home! He’s bedridden almost every day and I’m trying to take care of him and assure him that his symptoms will go away soon with the medication to kill the Lyme. It’s been months, and he feels absolutely horrible every day, all day. He would take his own life if it were painless. I’m doing research, and trying my best to make sense of this. I’m 67, and he’s been living here for almost 2 years because his father has not had his house remediated from mold. I’m doing the work of housing both of them, getting mold remediation done with essential oils by a professional architect and mold remediator. Essential oils will make the dead mold non-toxic.
The fact remains that even his neurologist, who is supposedly very good, doesn’t know what IIH is! This scares me that our medical professionals in Michigan don’t have a clue about these things.
Another question, do you have this with Lyme? How did you get rid of the pressure? His neurologist doesn’t know what IIH is!
@@Tinyteacher1111 my family member kept testing positive for Lyme, but the Western Blots were all negative. It ended up being a very rare brain cancer: Diffuse Leptomeningeal Melanocytosis. If you are not getting answers, it can’t hurt to go to Northwestern in Chicago to their Oncology department to hopefully rule out cancer, but if it is cancer, then you will have some idea of what is happening. Best of luck, I hope things go well.
i have the same symptoms my eyes been getting worses please can someone helps
See a doctor how are we gonna help you
I have IIH and I am surrounded by cocky neurologist and other wise idiots - because I’m black this took 10 years and being accused of being a junky - hunting pain pills - before I could get help. I have to find something or I will die in my sleep I’m sure of it most of my issues happen when I’m sleep
Find a Neurosurgeon
Does anyone have bradycardia with iih????
I do
Yes
Me
So I'm being seen for my iih the doctors say it's mostly patients who are female overweight well I'm male and not overweight I've had four lumber puncher fluid opening pressure over 40 everytime now I have to have a shunt 😮
U did shunt
Have they put you on Dimox
@suryrivas2057 no asitasolmide
@HananIbrahim-cb3wb yes now feeling so much better 😌
@suryrivas2057 if u have iih I hope u get better ASAP that shit is horrible
what if you’re experiencing this but don’t have obesity.
Hello Unfortunately, we are unable to provide medical advice via social media. We would recommend discussing your concerns with your care provider.
Has anyone who had double vision because of IIH and taken Acetazolamide (Diamox) and can tell me when they noticed improvement?
I’ve only been taking them for a few days but my double vision isn’t getting better (maybe even worse?) and it’s really stressing me out. I really fear going blind :(
My eyes were normal in a day after taking Diomex
Mine are still not the same and I’ve been on the meds for 3 weeks. I’ve been told it can take up to 6 months for the condition to “stabilize” on medicine.
Did you get any better? Did your double vision go away? Please answer me I have the same problem
I have the same problem, I hope it will get better. How have u been doing now?
I took it and thought I was getting better but when I went in for a check up they told me I needed to have a shunt put in asap
I’ve lost nearly 5 stone and I’m no better.
Crafty Lucinda sometimes it’s not weight related, my paediatrician says my iih is somewhat of an anomaly because of my age young and okayish weight.
You look like you need to lose more
বাংলায় ভিডিও বানাবেন
This guy is missing the point, what causes this problem, I have these symptoms and more, I weigh 120 pounds it’s not a weight issue, I believe it’s from neck instability, as soon as I get some extra money I’m going to CARING MEDICAL INSTITUTE they treat this problem with PROLOTHERAPY and of course Medicare won’t pay for it.
They call it idiopathic they don't know the cause yet
I currently have I.I.H at 14 years old...
I get this sometimes when I smoke weed usually after a night or series of nights of binge drinking and it has caused things from vision changes to numbness in the left side of my neck and upper back and I can even tap on my neck and feel the cord wiggle in my brain lol, fun stuff...
947 Fadel Hills
Lyme and babesia too
I have it. Apparently losing weight is my only option..... 😢
No meds? How are u now?
@@LizVanessasVibe I've lost 35 kgs. By hard work. I am completely cured. No more ihd at all.
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