Pseudotumor Cerebri or idiopathic intracranial hypertension(IIH) | Eye Doctor Explains

In this video Dr. D explains a case study where a patient was diagnosed with pseudotumor cerebri (idiopathic intracranial hypertension or IIH). She goes through his symptoms, her findings, his treatment, and how he's doing now. IIH can be a condition that robs someone of their vision, but can be caught by a thorough annual eye exam. If you have pseudotumor cerebri, leave a comment below explaining how you were diagnosed, how your vision has been affected, and if you're currently taking diamox (aka acetazolamide). #pseudotumorcebrebri #idiopathicIntracranialhypertension #iih
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🏡 We are Salisbury Eyecare and Eyewear - a cold start optometry practice and optical shop that is owned and operated by Dr. Melanie Denton Dombrowski in downtown Salisbury, NC. Our office operates out of a darling Victorian home where we provide medical and routine eye care and Dr. Denton specializes in dry eye treatment and management of various ocular diseases. Dr. Denton is a member of the Bausch and Lomb Speakers Bureau, a former member of the Alcon Contact Lens Speakers Bureau, a current Alcon consultant, a member of the Allergan Advisory Board, a member of the Valeant Advisory Board, a TearCare consultant, a Lumenis consultant, and a member of the North Carolina Board of Examiners for the North Carolina Optometric Board. We started this channel to provide patient education and eye-related product reviews, as well as to share our experiences in the office and at community events. None of our videos are directly sponsored. We hope you enjoy our videos! Make sure to leave comments and suggestions about what you’d like to see next!
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pseudotumor cerebri symptoms, vision loss, chiropractic neurology

[@user-nl1et3br8i]

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]

Did you go to Caring Medical?

[@reilynintemann7850]

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]

Same here. More power to you 💝

[@standardthree9346]

Hi dear. How are you feeling now?

[@efratguy]

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]

@@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]

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

[@standardthree9346]

I love this video! Great job!

[@MandySkogeboREALTOR]

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]

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]

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]

​@@belaaureada54 what about lumbar puncture?

[@_Julie_Bee]

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]

@@_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.

[@chanelb6050]

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.

[@ToddTheGunGuy]

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

[@EyeSchoolwithDrD]

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

[@peterholthoffman]

A very interesting case!

[@varunverma1395]

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

[@anacabrera9764]

I loved it!!!

[@selmasila7369]

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

[@medicine1111]

Thank you for your education!

[@user-mk6qp1hz1z]

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!

[@TKMcEachin]

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

[@natanyarosee]

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

[@semperfigirl9118]

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.

[@timatim295]

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

[@cyndeefreeland9407]

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

[@standardthree9346]

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

[@heatherknox804]

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]

Me too I’m going to the doctor tomorrow sadly

[@zacharyoconnor4154]

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]

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]

What’s wrong with diamox?

[@mommawife4707]

Lose weight if your overweight

[@brianknecht3216]

Very interesting, would appreciate similar content.

[@EyeSchoolwithDrD]

More to come!

[@philipbarton2056]

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.

[@chelseabrookman8953]

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

[@user-mu3fn3rh8q]

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

[@thefarmers7819]

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.

[@1272021]

I have this medical condition.

[@hollyw7410]

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]

How are your eyes now?

[@hollyw7410]

@@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

[@kathyleblanc7718]

They just keep upping my med

[@popstargurl241]

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

[@_Julie_Bee]

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]

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]

@@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]

@@_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]

@@_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.

[@lyniah01]

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]

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

[@belaaureada54]

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]

how about lumbar puncture?

[@donnatassone9767]

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.

[@mariaaastarr3032]

Can a person with this illness ride and airplane?

[@jf.7599]

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

[@jennifermurray4387]

Me also!

[@Anarchist_syndicalist]

Is it safe to take lumbar puncture test?

[@EyeSchoolwithDrD]

Yes! Safe and necessary for diagnosis of this condition.

[@kes9612]

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.

[@taralynnravenfire6892]

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.

[@Peace1dy]

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]

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

[@joelpatist5464]

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]

Smaller brain

[@jenniferguillory1744]

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

[@chloehesse9138]

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]

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

[@VivianKuvare11]

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

[@meliguti90]

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

[@chloehesse9138]

@@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]

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 😥

[@crookedbiden9788]

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

[@MCGDLV]

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]

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]

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

[@prajnamaharana1243]

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

[@whatdoinamethischannel9749]

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]

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?

[@thedoctress732]

They did my lumbar puncture first then MRI

[@carolwingo8380]

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]

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

[@ankithtiwari5666]

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]

Hi, do you have pulsatile tinnitus as well ?

[@tiarabrokaw]

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

[@HananIbrahim-cb3wb]

How are u

[@HananIbrahim-cb3wb]

​@@lakkadbagga how is your tinnitus

[@lakkadbagga]

@@HananIbrahim-cb3wb tinnitus or pulsatile tinnitus? Two very different things.

[@GRRRRAAAAAAHHHH]

I’m 14 and have IIH:(

[@tyradmytro9555]

I'm 13 and I have IIH too :(

[@GRRRRAAAAAAHHHH]

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

[@tyradmytro9555]

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

[@GRRRRAAAAAAHHHH]

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

[@tyradmytro9555]

@@GRRRRAAAAAAHHHH just sent you a message

[@carolwingo8380]

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]

@@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]

@@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]

​@@azimlikz3431 did you get your lp?

[@azimlikz3431]

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

[@rans0101]

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