To anyone with IIH, before seeking surgery or medication, consider your upper neck alignment and stability. Some IIH is due to mal position of C1 which can be helped by NUCCA chiropractic. Or cervical instability which can be improved by Prolo therapy (see Caring medical). Or through the Postural Restoration Institute.

@screenname2206

3 ай бұрын

Did you go to Caring Medical?

I have IIH and thank god for my ophthalmologist every day because it was missed by primary care, ent, audiologist, neurology, and neurosurgery. He sent me right from my regular eye exam to the ER, thinking I had a tumor or bleed. I still have active disease on diamox and Topamax and see my neuro-ophthalmologist every 3 months

@yashopoornashree1978

2 жыл бұрын

Same here. More power to you 💝

@standardthree9346

2 жыл бұрын

Hi dear. How are you feeling now?

@efratguy

Жыл бұрын

I had it too, strongly recommend to look at any drug you might have taken and Stop (that how it stopped for me) no matter what the doctors tell you unless it's a risk

@taralynnravenfire6892

11 ай бұрын

@@efratguy yours went away after you were off the meds, how long were you off them before it stopped. And what drugs? I really believe this is my issue why my mri showed Apparent pap and iih and also showed incidental arachnoid cyst in right cerebellar. I had mris and cts done 2019 2016 and 2013 and 2009 all normal. I've had non healing wounds from spider bite resulting in my feet legs and hands all swelling and abdomen and they treated with Doxycycline which is now they did mri repeat in April looking for MS cause I have bad numbness and pain. I gwt pressure just not all time like when dehydrated or over exerted etc.

@broomstix1

7 ай бұрын

I’m in the hospital right now after the exact some scenario. I’m so thankful because I would have never known.

The same thing happened to me 23 years ago. I was having headaches so I went to the eye doctor to make sure it wasn't from straining. The doctor kind of panicked because she saw pappliedema and insisted that I go to the ER immediately for CT Scan to rule out a tumor. I was told I had pseudotumor cerebri. I never got any kind of treatment for it and went on about my life for the next 20 years. I self medicated with 1200 mg of motrin for my headaches. I suffered quite a bit. Most doctors had no idea what I had and thought it was "all in my head". Now I am 46 and my vision is deteriorating significantly. I believe that the pressure in my brain and spinal column is also causing me to have some nerve pain in other parts of my body as well. Some days I can barely walk. I am about to ask my eye doctor about shunt or stent surgery because I cannot tolerate the acetezolamide. The side effects of the medicine are worse than the disease. For me anyways. Long story short... If you get this diagnosis, don't avoid getting help. It is a very real disease that should be treated.

@renee6868

2 жыл бұрын

Isn't it crazy...drs have not mentioned this disease once with my crazy symptoms...I got an mri and it suggests I have iih...the dr referred me to neurologist and never even told me to book eye exam...I did that one my own due to an IIH support group on FB ffs....this should not happen...drs need to be more vigilant...im still waiting after a month for neurologist to call n see me

@belaaureada54

2 жыл бұрын

Can you please help me, i’v been suffering for almost 3years. I take me steroids for almost 6months but after a year the swelling returned. I been done in my 2 MRI. but there is still no proper treatment.

@user-fx4kc5cr7m

Жыл бұрын

​@@belaaureada54 what about lumbar puncture?

@_Julie_Bee

Жыл бұрын

Thank you. I'm 46, just saw the optometrist, I'm terrified of spinal taps, but reading your comment... Yeah, I'm gonna follow up

@MandySkogeboREALTOR

Жыл бұрын

@@_Julie_Bee To follow up. I had gastric bypass surgery and lost over 100lbs so far. My vision is still bad but my pain and headaches have gone away completely.

I love this video! Great job!

A very interesting case!

I'd been going to my GP complaining of symptoms and even went to A&E. They either them down to my severe anaemia or my gynae issues. Finally went to my optician (maybe I needed a new prescription) and he found papilloedema, probably caused by IIH. He then referred me to the eye clinic, had loads of tests, a lumbar puncture and now have a prescription for diamox. Thank God for my optician. Kinda scared to start taking the diamox but hopefully it helps.

Thank you for your education!

@user-mk6qp1hz1z

15 күн бұрын

Absolutely disrespectful towards iih patients that are suffering right now!..sounds good but isn't! We as iih people that have been diagnosed have rely on Google..left to rot on a waiting list!

I have IIH and it’s a nightmare. I had it for about a year, and half a year with diamox (what I call the demon drug). Two months ago my neuro and neuro ophthalmologist said it was in remission. I went for my check up today...and it’s back. I hate it. Time to go back on diamox...oh the joy 🙄🙄 it’s incurable so it’ll never be gone, but it can go into remission

@jenninyc2509

3 жыл бұрын

Me too I’m going to the doctor tomorrow sadly

@zacharyoconnor4154

2 жыл бұрын

I too have iih. And am now dealing with bladder issues that I have yet to be able to find the cause for. Fun fun 😑 I hope you’re doing well. I’m sorry for your experience, and I hope you’re doing well

@taralynnravenfire6892

11 ай бұрын

They want me to start Topamax and I've heard it's a nightmare. I am so scared. I see neuro optimoligist Wed. I don't get them all the time. I have a non healing wound and inflammatory responses. Is it possible for a MRI to show apparent Papilledema and Intercranial Hypertension but it be from the inflammatory response? Where if the wounds causing the inflammation heal would that person be able to heal like it being secondary? Sorry to ask this but I cannot find any help with this. I had an mri done and for suspected MS. I have a sulfa allergy and am scared to take the Topamax they told me to take.

@ApeHarrop

10 ай бұрын

What’s wrong with diamox?

@mommawife4707

7 ай бұрын

Lose weight if your overweight

Thanks for the beautiful explanation Dr 👍👍😊😊 love from India

I loved it!!!

I have IIH it's just terrible , thank you for the vid

That sounds like such a scary thing but glad he is back and congrats to u Docs🥰

@EyeSchoolwithDrD

3 жыл бұрын

I was so glad he came in for a routine exam!

Thank goodness for Optomap caught IIH early beginning of 2015, I was just medical retired from military Jun 2014. I was treated for a bad eye infection before I was retired but was given the all clear. I will never forget going to local eye doc and he say I believe you have IIH but to make sure it's not the worse case, Emergency MRI. I thought to myself here I go again!! MRI showed it could possibly be but there sending me to see a neurologist more specialized in the City 2hrs away. We drive up to the city 2 days worth to see these specialists just find out I have IIH. The cherry on top is that the Va then want their neuro to see me to run there own test and that was 2 more days.

Very interesting, would appreciate similar content.

@EyeSchoolwithDrD

3 жыл бұрын

More to come!

Same thing happened to my sister. The ophthalmologist I work for caught it.

My eye dr was one of the only people who believed me. The other drs told me it was just headaches and now I have a shunt placement scheduled

My son (13) and I both have IIH. We both are on Diamox and I take Topamax as well.

@standardthree9346

2 жыл бұрын

How are you guys now? Hope you all are better my dear.

I have this condition I ran out of diamox and cant afford it now because my deductible is too high. $189 for a 30 day supply. My vision is funny now

I have IIH and I’m only 14 years old my eye doctor sent me to a eye specialist which sent me to the hospital because they thought I had a brain tumour but when they figured out it wasn’t a brain tumour they had to give me a spinal tap because I had to much fluid on my brain and then I was admitted to the hospital for a couple weeks. It was not fun then I went home and I was sick and I got admitted back into the hospital. Then I was doing visual field tests twice a week and seeing the eye specialist and then he would send me to a childrens hospital and I was admitted there for a couple days then I went and spent the night at a hotel then went home the next day and now I’m on water pills that drain all that fluid and I go to the specialist every couple months and I go to the hospital for blood work because they had to put me up on the pills so I was taking 4 pills 3 times a day and it gave me acidosis and I wasn’t eating it was making me sick so I had to get lowerd on my meds and get switched to a different type of meds for my Iih

I think I might have this. In my case though it’s not idiopathic. I took 4 pills of slow release doxycycline to try to get rid of ocular rosacea and that seems to have caused it.

I have iih. I was dx in the hospita 1:45 l. I just stopped taking Diamox. I take Lasix now.

I have IIH and Chiari Malformation. Due to my Chiari, I cannot get a LP. My ventricles are small so a shunt isn’t recommended. I’m not overweight. I take Diamox but it doesn’t seem to help.

Dr D did the patient go back on the diamox after he had the shut placed ? I have pseudo tumor and the tinnitus and head is awe ful ; along with the unpleasant side effect from the diamox ; I could not tolerate the topmax but the metroprol helped , i am searching additional options

@princesssuge01

Жыл бұрын

For me the vp shunt allowed me to discontinue all medications. Its been 5 years and I've only went in remission once during pregnancy. They adjusted my dial and I was back to being pain free

I have been dealing with pseudo tumor cerbri for20 years my eyes are extremely damaged. When I was having all my symptoms I went to the dr almost every other day, urgent care, and then 3 months of that and dealing with double vision for 2 months and the doctors telling me I was just drug seeking. My left eye went in and my right eye was straight at 19 years old my mom rushed me to the emergency room where they did a CT scan and telling me "the on call neuro surgeon was being paged, there was a slight issue with my ct scan". I asked the doctor whate as wrong with it if I moved they would of just redid the test, the er doctor said "well, we are admitting you for a brain tumor. I will be back when I have more information " Ithe next day I went for an mri and had a lumber puncture done and they couldn't even tell me my opening read my spinal fluid went out of the vertical plastic tube.

@ramo737

Жыл бұрын

How are your eyes now?

@hollyw7410

Жыл бұрын

@@ramo737 I have blind spots that will never go away. I have a black dot in the middle of my right eye that will never go away. I have a lot of damage to my eyes

They want me to start Topamax and I've heard it's a nightmare. I am so scared. I see neuro optimoligist Wed. I don't get them all the time. I have a non healing wound and inflammatory responses. Is it possible for a MRI to show apparent Papilledema and Intercranial Hypertension but it be from the inflammatory response? Where if the wounds causing the inflammation heal would that person be able to heal like it being secondary? Sorry to ask this but I cannot find any help with this. I had an mri done and for suspected MS. I have a sulfa allergy and am scared to take the Topamax they told me to take. I had multiple mri of brain done. I had done 2009 CT . 2016 MRI . And 2019 CT and one this April. I gained 100+ pds and they aren't sure why. I have swelling in my legs, abdomen, hands, and feet. I fully think the swelling everywhere in my body has spread to my head somehow.

Argh, just left the optometrist today, she rushed a referral in neuro ophtalmology. I hope things go well. I'm terrified of getting a spinal tap 😅

@taralynnravenfire6892

11 ай бұрын

I am as well. I go see neuro optimoligist Wed the 7th of June so 2 days after wake up. I am terrified of all of this.

@_Julie_Bee

11 ай бұрын

@@taralynnravenfire6892 the hospital had lost my referral for the brain scan I was asked to get within a week of seeing the emergency ophtalmologist. So instead of having it done a month and a half ago, I had it a few days ago. It was my family dr who got mad and shook things up at the hospital and within days I had an appointment. Is crazy, were talking about the top of the line brand new university medical center in a huge city. Just my luck. 🙃 I'm waiting for the spinal tap date, it's confirmed I need it. Since I have a diagnosis of cptsp I'll be able to ask for sedatives, I don't know if it's something you could get, but I hope all goes well for you. Keep hope it'll all be benign, I'll have you in my thoughts ☺️

@taralynnravenfire6892

11 ай бұрын

@@_Julie_Bee they are saying that I'm not a candidate for spinal tap. They wanted me to start Topamax but I have sulfa allergy. My situation is very bizarre. I had mri of brain in 2019 2016 and cts 2009 and 2019. All normal. In 2018/2019 I gained 100pds. I stopped drinking caffeine and alcohol shortly before amd started being able to finally eat after suffering from severe Gastrointestinal issues that made it very hard for me to eat for many yrs. Then I was bitten by spider in 2020 and given multiple rounds of Doxycycline and my inflammation markers have remained High for last 3 yrs. I'm guessing mine is secondary for sure from videos I've watched etc. The Neurologist I seen was very callus and cruel dismissive and mocked my issues and told me I needed to settle down and relax when I just asked a couple questions to better understand the problem and what my mri showed after waiting 4+ mth for appt with her being told from everyone they didn't know much about it wait for neuro and neuro optimoligist appts. My neuro optimoligist is 3 days away so hoping to have better insight. This is terrifying. My pcp thought cause of my neuro symptoms I possibly had MS cause I have a strong fanily history of it on my mother's side. Mri showed Apparent Papilledema and apparent IIH. Arachnoid cyst in right cerebellar medullary 1.7x1.6. Incidental finding.

@taralynnravenfire6892

11 ай бұрын

@@_Julie_Bee I'm so glad you finally got your appts. I know all too well how it feels being pushed around. I've been telling them for yrs now something is not right as I went from weighing 130 to 250 and am miserable. I just want my life back. My legs, hands, feet and abdomen are all super swollen and edema pitted. It makes my back 1000 times worse. I get pressure in head and headache migraines but nothing like some of stories I've heard of people with IIH. I maybe have couple times week and when over exerting or after stress etc or when dehydrated. My main issues are with legs and back pain and numbness. I've always not had great vision but I never thought much of it I scheduled eye Dr appt last yr and they said 6 mth then in March this yr told me they didn't take my ins day before my appt. I was diagnosed having astigmatism in left eye as a teen and have hearing loss of 85% left ear and 30% right and never wore glasses or hearing aid and always winged it so for me none of that was really standing out as unusual.

Is the whooshing sound constant? I hear that but like once or twice when laying down to sleep.

@jennifermurray4387

6 ай бұрын

Me also!

I have had this for years and whether I weigh 135lbs or 260lbs (when pregnant) or down to a rather slim weight for my build @140lbs, my eye Dr always blames it on weight even though the pics of my eyes are always like this (now even worse) and I have lost\gained weight multiple times over the years. For the past 5yrs (and eye exams every 1 or 2yrs) I haven't been heavy at all for my height (as matter of fact last year myregular Dr said I looked sickly @130lbs) but my eye Dr seems to think this is the only cause or possibility since this is common in women of childbearing age (or so he says). I'm really thinking about getting a second opinion from a different optometrist because mine is doing nothing for me and I know all too well about the headaches and that "whooshing" described in the video as it happens to me as well. My blood pressure has been pretty normal every since I had my child, got on medication and lost the baby weight and I eventually didn't need it anymore and it has stayed relatively normal. My high blood pressure starts in pregnancy and usually requires treatment throughout, I had eclampsia after my daughter. My question is what are the long term effects of this and has the nonchalance of my eye Dr blaming everything on my weight (whether over or normal) has been adversely affecting my health for the past decade. My eyes have had these type of pics (diagnosis) since I was a senior in HS and I'm now 33yrs old. Before he never wrote the diagnosis down for me or even really called it by name but today I made him and I am keen on figuring out what is going on with me because I'm tired of always feeling like death warmed over, with a busting headache. For a long while I thought it was my squinting because I can't wear contacts at work (eyes so dry from dust they fall out) and in the summer time my glasses would fog up so I went without. I really thought that was the cause but for past yr or so I've worn glasses at work for 9months out of the year (so not squinting alot) and still have these headaches and intense pressure behind my eyes, I can feel it sometimes. The whooshing isn't as often but it happens enough that I know exactly what the vid was referring to and it almost feels like you can hear the beating\pulsing within your head. It's an awful feeling. I also have had these stringy like clear booger things that gather in the corners of my eye and I use q-tips dampened to remove them and they really come out like stringy clear mucousa. Sometimes I can feel them in my eye but these aren't "the floaters" people talk about as these gather in corner of your eye as sleep does after waking. It's all very strange and until now I thought it was just me so I'm glad to find out what's really going on in my body and other causes or issues not related to weight because I truly do NOT believe that is the only thing causing this for me. I'm 5'6 and fluctuate to 135lbs to 150lbs from summer too winter.

I have this medical condition.

I have iih unfortunately my optometrist missed it and I lost my vision in right eye and then was diagnosed and lp shunt fitted

@VivianKuvare11

3 жыл бұрын

I'm sorry to hear that, did you also have double vision?

@VivianKuvare11

3 жыл бұрын

I have been diagnosed with IIH about a week ago and I have double vision. I'm on medication but still no improvement...

@meliguti90

3 жыл бұрын

Is it a complete vision loss....will you ever get it back....thats what I am most worried about

@chloehesse9138

3 жыл бұрын

@@meliguti90 I'm registered severely sight impaired I walk with a cane in unfamiliar places obviously lost my driving licence have no depth perception and I've lost most colours and Contrast

@jessicajamise

3 жыл бұрын

I've lost my vision as well. Countless lp, diamox, and topomax and none of it helped. Now I have a LP shunt in place but the damage is already done 😥

I wish Acetazolamide resolved my symptoms. It does keep me from having to call 911 or make trips to the ER. But it certainly didn't resolve symptoms for me from this neurological Hell.

Is it safe to take lumbar puncture test?

@EyeSchoolwithDrD

2 жыл бұрын

Yes! Safe and necessary for diagnosis of this condition.

Me and my stepdad have ihh, we both have a drain. I have had it since i was 5 and he since he was 46. I had a pressure of above 50 and i didnt have as much pain or the feeling of pressure as him while he had a pressure of about 35. Why did i have less of a feeling of pressure than him while i had a much higher pressure

@samanthawilliams5497

7 ай бұрын

Smaller brain

Can you please help me, i’v been suffering for almost 3years pseudo tumor. I take me steroids for almost 6months but after a year the swelling returned. I been done in my 2 MRI. but there is still no proper treatment.

@user-fx4kc5cr7m

Жыл бұрын

how about lumbar puncture?

They just keep upping my med

@popstargurl241

2 жыл бұрын

Same! I feel like my neurologist doesn't listen to me and her and her nurses take weeks to get back to me.

Can a person with this illness ride and airplane?

IIH is terrible! I also found out by giving eye exam results to my neurologist which enabled further testing to confirm

Hold the phone! I have Iih I have dealt with Iih for over 10 years. Iih is not caused by weight but is effected by weight. Iih also causes weight gain. Opening pressure can be lower then 15. Please don’t push the weight part because it’s not the only factor. Why does being over weight effect icp? Well estrogen is stored in fat cells. Estrogen also causes fluid retention!

@esradeville1266

2 жыл бұрын

I agree I was only 120 pounds when I was diagnosed with IH I was nowhere even near the median for my weight versus height ratio that’s why it took so long for me to get diagnosed the doctors didn’t want to agree to even check for it because I wasn’t overweight.

@ehjohn027

2 жыл бұрын

I agree, I'm only 145 and my heaviest was 152. So I've never been obese.

@prajnamaharana1243

2 жыл бұрын

Hii @Mechelle !Can you please guide me how you deal with it for these long years?

My wife suffers from this and has been for the past 3 years. The side effects from the medication are horrible. It seems that the surgery is the only way to really treat this? My wife doesn’t want to go under the knife in that way.

@sadditylovely

2 жыл бұрын

@Bar1 is it true you hear the fluids been drain from the shunt

Is it normal to get up and have a awful headache causing my vision to become foggy temporarily blinding me for a couple seconds

@mythomniverse

2 жыл бұрын

Hey. I am sorry I don't have answers to your question but I'm worried. Are you okay? What happened? Did you get your problem diagnosed? What did it come out to be?

Can someone pls tell me if this condition can be cured by shunt and avoid vision loss ??? I have a 5 year old kid who has to be taken care of… this condition scares me to death…my vision is deteriorating and I am 32 year old…

@ramo737

Жыл бұрын

I got a shunt couple days ago and also almost got blind on the left eye. What is your condition now?

@shobas6053

Жыл бұрын

@@ramo737 : Am seeing halos on both eyes and headache- Is shunt a big procedure have you got your vision clear now?? Can you be normal after shunt or is there any discomfort???

I have fake tumor on my optic nerves also have water on brain I take diamox I have herpes on my let eye

Even I'm a patient.. Of iih .. My. Neurologist was treating from last 6 months... And my eye doctor was exmaning every 15days My opening pressing in Lp test is 47

@lakkadbagga

Жыл бұрын

Hi, do you have pulsatile tinnitus as well ?

@tiarabrokaw

Жыл бұрын

@@lakkadbagga I have pulsatile tinnitus. And was told IIH. What's the relationship, do you know?

Dont think the neurologist knew how to do lp. Had to poke me 5 times. Terribly painful. Causing leak..resultant blood patch, then subdural hematoma

@JessabellaRose

2 жыл бұрын

And I was poked 3 times by 2 Drs in my first LP a few weeks ago with no fluid and am still in pain. But I have a fractured spine and will gladly take 10 times the pain to save my vision. Oh and btw, I was having lung surgery 3 days later so I wasn't allowed to use any pain meds after my lumbar puncture. And I still am excitedly awaiting the second. Stop telling people not to have one

They did my lumbar puncture first then MRI

I’m 14 and have IIH:(

@tyradmytro9555

3 жыл бұрын

I'm 13 and I have IIH too :(

@GRRRRAAAAAAHHHH

3 жыл бұрын

@@tyradmytro9555 wow really? id love to talk to someone my age with the same condition. do you have any socials??

@tyradmytro9555

3 жыл бұрын

@@GRRRRAAAAAAHHHH yeah! I have Twitter. @1_800_QUEEN_B33

@GRRRRAAAAAAHHHH

3 жыл бұрын

@@tyradmytro9555 hey I followed you!! i hardly use twitter tho so can you send a message request??

@tyradmytro9555

3 жыл бұрын

@@GRRRRAAAAAAHHHH just sent you a message

Moral of my last comment. Dont get a lumbar puncture . First try diamox first. Lumbar puncture caused all problems .. back hurts resultant and the hematoma, hospital stay and all my suffering caused by lp. Optic nerve never but 1.5 elevation and most of time just a trace. Try not to have lp which is invasive or stent. Shunt...unless high elev and threat of blindness. Wait it might resolve

@azimlikz3431

2 жыл бұрын

@@raquiely Yes me too. I have one lumbar puncture. I am 19 years old. I am afraid but LP is not very bad for me.

@KytexEdits

2 жыл бұрын

@@raquiely I got diagnosed yesterday after a lumbar puncture, hurt like hell the first 3 tries, but the 4th succeeded and I've had zero side effects besides some pain at the site itself, which is almost completely gone after merely 56h.

@rans0101

Жыл бұрын

​@@azimlikz3431 did you get your lp?

@azimlikz3431

Жыл бұрын

@@rans0101 yes I got it. Mine was 2 years ago . I remember that currently

@rans0101

Жыл бұрын

@@azimlikz3431 do you recommend getting it? Did you get a diagnosis from it?