Community, Treatment

Learning About Intracranial Hypertension (aka Pseudotumor Cerebri)

Intracranial hypertension (IH) is a headache disorder where the body cannot effectively absorb or drain CSF. It is caused by too much cerebrospinal fluid (CSF) pressure inside the skull. Also referred to as benign intracranial hypertension and pseudotumor cerebri, many people with headaches fear IH is the cause. The most common symptoms are:

  • Severe headache
  • Visual changes
  • Whooshing noise in one or both ears that is correlated with the pulse (aka pulse-synchronous tinnitus)

Whether you’ve been diagnosed with IH, are worried you might have it or just want to learn more, the Intracranial Hypertension Research Foundation‘s website is the place to go. Created by a retired ophthalmologist and his wife after their daughter was diagnosed with the illness, the foundation supports medical research and is an educational resource for patients, families and medical professionals. Exploring a Medical Mystery is an introduction to the foundation and the disorder.

The Intracranial Hypertension Research Foundation is also building a registry of people who have IH. Researchers can use the database as a foundation and recruit study participants. It also documents the illness and its effects, which helps teach medical professionals, public policy makers and the general public about IH. If you have IH, please consider registering.

I’d like to learn more about IH too. Please share your thoughts in a comment below or on our online support group and forum.

51 thoughts on “Learning About Intracranial Hypertension (aka Pseudotumor Cerebri)”

  1. You are not an uncaring wife by any means. This is one of the illnesses that can be referred to the ‘look so good syndrome’. He looks fine to everyone else, they cant see what is happening. Lowering the stress as much as possible will help him a great deal. I have had Psuedo for about 20 years or more. And PLEASE understand that he is not pushing you away. I did not realize with mine, prior to an onset I get absolutely agitated beyond control. Just before my 4th onset my daughter recognized it and told me she saw a correlation of my then SELF vs my normal grumpiness. I then started watching myself…sure enough just a week or two before onset I get unbearable. I immediately cut the salt try to alleviate the stress as much as possible, stay out of extreme heat. I too seem to need the solitude. I think it is a self defense mechanism to decompress and try to get a handle on it. Sometimes I dont even realize I’m doing it. Often I feel as though no one believes me, the fatigue is rentless, and the least bit of disfunction exasperates it. Some can handle more fluid than others building up within. Spinal tap under fluoroscopy is music to my ears when my flares, it is the only relief. I have lost some of my peripheral vision. I have not researched for years but I once read that with each onset, as much as 10% of eyesite is effected. You did not indicate about his weight…but weight gain has been know to help trigger and be part of the cause of Psuedo. I have understood when I read about it years ago that it will typically rear its ugly head at about 40 years old, someone is overweight and that has had a lot of antibiotics and steroids. I just contributed mine to a another Lyme issue. It is a very difficult issue to endure. He is not pushing you away, he actually can not help some of his actions. He is in self survival and may not even realize it. Even if he laughs, sneezes, caughs, steps off of a curb or step; Any jarring at all can trigger a headache that makes a migraine a welcomed trade. I know it is hard for everyone. There are options depending on his severity and onset. They can put a plate behind his eyes to help prevent the pressure behind his eyes, a shunt can be placed to help keep the spinal fluid regulated. There is a gland at the base of skull, I didnt understand completely but my neuro called it empty cella. I thought the first neuro said I had empty cells… I jokingly asked him not to tell my husband as it would only confirm what he had thought for years that I was truely an airhead…lol. I feel your pain as well as his. I know how hard it is for Jeff and kids when I experience the headaches n inbetween. He knows you love him, you are not uncaring, there is only so much you can do. As far as others thinking…let them think, they are not in your minds, household, or relationship. Do what you can and know he loves you. Seek options.

  2. My sister is having such a hard time ,her left vision is worse than her right eye. Sending postivity your way 💕

  3. hi my name is dee, My husband has iih ,and had a vps fitted he got this horrid illness over 7 years now. Still has not got any energy, lost most of hes sight in one eye depressed most of the time love him dearly I get call a non carring wife coz I don’t know what to do try to help but some time he pushes me away

  4. Hello! Looking for some feedback my sister got diagnosed in January and got the shunt placed in. After two weeks after having the surgery her vision completely changed for the worse. Anyone going through something similar please feel free to reach out

  5. I would love a correct diagnosis. The problem is that the doctors I go to treat me like a hypochondriac so I will probably die before anyone believes there is anything wrong with me. I am completely fed up with fighting to be heard. It started with the wooshing in my left ear; vision changes in the form of swirling black or gray lines that look like puffs of smoke in my eyes. I don’t have diabetes. But I would call them floaters. Tired all the time. Body aches that can be debilitating. And the headaches that sometimes feel like someone is sticking an ice pick in my eye brow or in my sinus cavity. All on my left side. Nauseous with the headache. And my mother has some kind of weird vein problem with her cartoid artery. Had a AAA surgery 2 years ago and my sister passed away at 39 from coronary artery disease. I am 47. On top of all of this I have electric shooting nerve pain in my arms, hands, legs, and feet. My hands (and arms) go numb. Doctor said its carpal tunnel. I say NO! Somehow I know all of this is related since when I have the worst of the nerve pain in my arms and hands I also have a weird choking feeling in my throat and a weird feeling in my chest. Doctors don’t listen. So I figure I can educate myself to educate them. I am also currently in law school. 2 more years to go.

  6. I have just been diagnosed with Psuedotumor cerebri…my spinal pressure was at 37 and I was unable to function feeling as though I had gone 9 rounds with a heavy weight boxer. Now after 6 days of taking Diamox I still can’t function. Walking down my hallway takes every ounce of energy and leaves me completely out if breath..I return to the N.O next week in hopes of something different. There is no way I can function this way. My vision has been effected and started several months prior to my ER visit. I’m afraid to drive. I haven’t been back to work, its a strenuous job (standing for 8 hrs straight, lifting heavy boxes, unpacking merchandize and stocking shelves) . I don’t think I would last 5 min…so now I’m stuck at home…my children are grown, my youngest is 17 and still at home and is a lot of help. But this is no way to live….

  7. Thank you all for sharing your experiences. I am very scared and freaked out. I have had slight blurred vision for two days and just saw the optometrist who believes I have ih, and I don’t know what to think. I have a follow up with a opthmalogist tomorrow and I’m sure the spinal tap and MRI will follow. Does any one have any positive outcomes or updates to share? I would really appreciate it.

    1. Amber, Keep in mind that the vast majority of spinal taps go totally fine. People tend to share their bad experiences with spinal taps here because others can commiserate. Best wishes tomorrow. Take care, Kerrie

  8. Hi !
    I have had Begin intracranial Hypertension for 17 years,
    I have read a lot of symptoms and they are all the same. I whinge that my arm ,shoulders and neck are always aching and no one seems to believe me. I went black blind before anyone would believe me. When that happen I went back to my doctor and he sent me to an eye doctor. When he looked at my eyes , he called the hospital immediately and I had a lumber puncture and was put on Diamox. To this day I still have headaches and feel crap. I have forgotten what it feels like to be normal. I do thank god that I got my vision back , I was very lucky! My vision today has got a lot worse, I just hope it doesn’t get any worse.

  9. Brittany.
    Hello im 25. Im 6 weeks pregnant. I have IIh scince Oct 2015. Mine is not that severe it was cought with a regular eye exam. But now that im pregnant my symptoms are getting worse. I saw my neorologist yesterday and told me to star Diamox 500 a day. I was told it wont harm the baby! But ti be honest im still having a headeach and my eyes hurt so bad. The only thing i can advice is to pray! God will listen and will give you what you ask with faith. God is great and if he is letting us go trough this is because he knows we can handle this. Take care and u are welcome to message me it would be great to be in contact.

  10. Hello…I am 26 and been dealing with this ptc for years but it’s different now…normally I can just go get the tap and it feels better after it is gone…and pain meds…but I’m pregnant now and I’m hurting bad tonight my head is feeling like it may explode…I’m putting off my e.r visit because I’m scared they won’t give me anything but Tylenol anyways and those of u with this know that won’t cut it ..and I just don’t know what to do…anyone? Please ?

  11. I was just diagnosed. Ithe started with what I thought was a migraine, except my neck was so stiff. I went to the doctor twice and they just shrugged it off as a migraine. I started to have shadows and voids in my eyes a week after. I went to theat er and they did a ctscan, negative. I finally went to the eye doctor two weeks after it started. He performed a field test and took some imagery of my eyes. He rushes me back into the room to explain to me about this. He tells me that the pictures show fluid pressure was causing my optic nerves to swell. He informed me that it was with urgency that I see a neurologist. I signed into a larger hospital and they did the spinal tap and mri. It turns out I had 42 ml of fluid when the normal person has 10-15ml. Now I’m thrown into a lifestyle that I wasn’t planning on and getting guilt tripped into losing weight which I know is good for me but I usually myself make that choice. My vision isnt even back to normal. I’m so angry that this has happened. I had no idea what this was prior. Now everyone around me acts like they have to babysit me and my decisions. I’m 33 years old and can’t believe this is happening.

  12. My pressure has been on opric nerve but also my eye dr said that oddly the next time he check my pressure was cranial. Doc for PSTC said that wqs odd as well. Luckily i inly have onsets about every 9 yrs. My head is smaller in size than qverage person. I have been curious if i can only handle less build up due to less room for the fluid. I know sounds goofy bit one has to ask. Try to stay away from steroids and antibotics, rapid weight gain. I recently completed another round of diomox for 6 months. No tap yet, yeahhh!

  13. Please help…..I have had PTC for over two years now, about a year ago stopped the medicine and was doing great for about 6 mo. I get regular check up at the eye doctor, my vision field was fine but he said that my optic nerve has no pulse. Has anyone heard that?? Also I am now experiencing severe headaches and ringing in my ears. Any advice would be amazing. Thank u

  14. Hey girls. I was just diagnosed with PseudoTC 1 month ago. I’ve been seeing dots, my eye Dr said I have swollen otic nerves, my MRI said nothing was wrong with me but it suggests that a vein in the right side of my skull has shrunken, which I think may be creating this build up of CSF? I just got my LP done on December 10 and it was 32. I felt great 2 days after but then I’ve had this constant headache that only hurts when I’ve eaten poorly or in certain positions- like sitting. My headaches aren’t that bad and my vision is still the same. I haven’t felt as nauseous lately, since I’m trying to eat vegetarian. I WEIGH 185 AND AM 5’9. Which isn’t that much overweight but I’m trying to get down to 160 at least!
    Does anyone have any successful stories? I’m rarely experiencing major headaches. I’ve been seeing these dots for 3 months now so I’m assuming this disease is working slow with me and giving me a chance to get rid of it.
    Do these medications work? My next appointment Im sure they will prescribe me meds.
    ANY advise or just want to chat, please email me!

  15. Jennifer Hughes—I have devoured this page and reached out to a couple people that posted years ago in hopes to get more info. I have CMalf I and syringomyelia and had decompression surgery in May, and a subsequent leak which caused my neuro to go back in, only to then find IIH or psuedotumor. I had an MRV hoping for stenosis so I could do stent vs shunt, but my veins are fine. Am in line for a second opinion next week, but am scheduled to have yet another brain leak surgery/exploratory and then VP shunt as last option. My vision has decreased since my neuro opth visit during whcih they found no papilademma. I am at my rope’s end as most are.
    Feel free to email me–

  16. I was just diagnosed with IH. Its terrible. Ive had two lumbar punctures in two days and the pressure comes riggt back. Im on diamox and. I feel it makes it worse.

  17. So it looks like most of you posted years ago but here it goes. I was diagnosed 8 months ago with a chiari 1 malformation with a 7mm herniation and I have pressure on my brain stem as well. I have now been diagnosed with IIH and they want to put a shunt in soon. The specialist thought IIH since April but since my visit with him then I’ve sent an MRI of my thoracic and lumbar and had an mrv done also I saw an optomologist who saw swelling in one eye only and then 3 weeks later cleared me and said I was fine optically. So now why the sudden jump on the shunting without even trying diet and exercise I wonder. I have to wait to call specialist back on Monday for answers. Doesn’t help he’s in NYC and I’m in Montana.

  18. I have been diagnosed w psuedotomor ceberi many many years ago. Have only had two taps due to pain. Diamox, amatripatline, usual meds for increased pressure. I have a question….has anyone noticed increased agitation and aggression just prior to or during a flair up? I become a totally seemingly different person when the pressure increases. It has been again now for a few months. Is it just my imagination… or has anyone else experienced this. I would appreciate any imput and  my thoughts n prayers go out to all of u who suffer from this disorder.

  19. My 17 year old was diagnosed in Feb 2013 with IIH. After fighting drs in Atlanta, Ga we were referred to the Mayo Clinic, in Jacksonville, Fl.
    What a blessing. She has IIH without paplademia. Which the docs at Egelston and Emory say is impossible. Now she is losing her vision. You know your body, so if you don’t agree with your doctor keep searching for better doctors.

  20. My daughter was diagnosed with IH last year. She is only 15. She had been having blinding headaches for three years but they thought it was typical migraines and then her eyes started to go and she would have episodes of blindness. I took her to an eye doc who saw that her optic nerves were very swollen and inflammed. He told us that it was IH and sent us straight to the neuro and hospital for a spinal tap. Her pressure was high in the spinal tap. It has also been confirmed that she has a borderline chiari malformation. They do not know which one came first. But anyway, Laura went on a weight loss regimen of over 40 pounds of weight loss and was placed on Diamox. Her optic nerves healed and her symptoms improved to where she has no symptoms currently. She does have some permanent eye problems that will never return. We are currently weaned off the diamox and are watching her closely for 4 months to see if the condition is in remission. The doc told us a simple 10 pound weight gain could cause it all to rush back again. So you guys are not alone.

  21. Hey
    I was diagnosed right before Christmas last year.I have been.suffering for ten years. I had one Lo that worked wonders..however I can’t see a neurologist until March. I had a baby 7 months ago and she was born 8 weeks early due to iih. I’m so fed up with not being able to work or care for her. I always need help from someone. I can’t drive. I’m on lortab, phenergan, elavil, diamox. I want part of my life back & be able to drive and not have vision problems. I am always nauaeated I don’t eat and the diamox takes away my appetite. I feel alone and crazy.

  22. My daughter had her lp shunt placed in 5/10 well in 3/11 it broke after havind headaches for 2months and doctors not listening to her because she didnt have swollen optic nerves which hello dr every pt doesnt have swollen optic nerves.She is still in pain everyday stiff neck we tried trigger point injections they worked twice and now we are doing massages.This is a nasty ugly dx that doctors dont know what the world to do.I live in Atlanta where we are suppose to have the best doctors NOPE whats scary is that they have not seen this in a lot of children I went to Emory doctor and they can give me better advice on her medical dx.2012 Im going to everyplace I know to find a cure for the terrible dx

  23. thanks so much kerrie – i was searching and found this post again. makes me cry to hear so many of our stories are so alike and im still floating around no real treatment and losing my sight

  24. Hello, someone above posted looking for someone in the portland or PDX area with Intracranial Hypertension – Im just across the river from you! you could email me at justrobin1111 AT

    I know it was a long time ago, but it was worth a shot – im desperately seeking new drs!

    1. I sent that commenter an email with your email address. I hope she gets in touch with you. I wish you the best of luck!


  25. Hi All
    I have had headaches for a long time. I had some severe left sided ear pain and pulsating whooshes about 6 mos ago. My vision is becoming more blurry. The most disturbing thing is that about 3 weeks ago I started having phantom smells of smoke. My doctor did an MRI and I have excessive CSF causing flattening of the optic discs, no sella and flattened pituitary gland. Can’t get in to see Nuerologist for another two weeks. Should I push the issue and try to get in earlier? I’m scared. This disease seems pretty bad. Advise?

  26. I have been diagnosed with Pseudotumor Cerebri for 1 1/2 years. In that time it feels as if the disease has taken away everything I care about. I can no longer work, I have had to drop out of school 3 times due to an inability to complete work and shunt infections. I have had 6 surgeries, I’ve spent over 50 days in the hospital and the pain has become so intense I can no longer think clearly.

    In an effort to keep myself sane I decided to start posting youtube videos regularly. I vlog about my disease and about the days when I wasn’t sick. I figure that the commitment to post videos makes me feel like I am doing something and if people learn a little about IH along the way, well it can’t hurt.

    Last week I posted an awareness video called “IH Our Story”. It is a moving edit that weaves together the stories of several women from around the world. I am encouraging all patients to share this video with their friends and family. For those who don’t have this cursed disease it is a small glimpse into the window of our lives. For those who do have it, well it helps to know you aren’t alone.

  27. My 14yo daughter was having headaches I took her to dr.and even er everybody said oh”migranes”related to her cycle.Then one day she became cross eyed I took her to opthamologist she dx her with swollen optic nerves and hospitalized for test did a spinal tap pressure over 50.Long story short she had 8 spinal tap and put on the highest dosage of diamox still didnt help.She had lp shunt in 5/2010.She feels better but still is having really bad stiff neck and sometimes headaches.The doctors cant get on the same page about what they think is going on so now im doing reasearch to find out if anyone else is having these same thing going on after having a lp shunt placed.

  28. As I sit here at home recovering from my second brain surgery, I decided to search the internet for blogs of other people suffering from Pseudotumro Cerebri. I was really surprise to see so many other ladies suffering from this disease. I was diagnosed in February 2008. I began having headaches around December of 07 but never really paid attention to anything until about the middle of Jan. I opened my lap draw at work and saw 3 empty boxes of goodie powders and two emply bottle of excedrine migraine. Once I realized I was having the headaches they came on full force. I had them all day every day. I went to see my optometrist and was told I my vision had not changed in the last 5 years since I saw him last but there there something a little funny looking(his words not mine) so he sent me to an opthamologist for a better looke. I went to see the best opthamologist in the world (in my opinion) He took pics of my optic nerve and confirmed the “funny looking” optic nerves had papillidema. In Tiffany language, my optic nerves were swollen. He ordered a MRI and it came by perfectly normal. He referred my to a neurologist. My neurologist said it could either be MS or PseudoTC. He was leaning more closer to the PseudoTC because both of my optic nerves were swollen and MS normally attacks one eye first. He did a lumbar punction (which I will call a spinal tap from here on out). He took my pressure and it was 28. Which under 10 is normal. He sent my fluid and blood sample off to the lab to test for MS. Those came back fine but he also sent me to take an Evoked Potental Test to make sure it wasn’t MS. He was just being extra cautious. He started my on diamox. 1st 500mg a day then 1000mg a day, then 1500mg a day, my highest dose I got to was 2000mg a day and 40mg of lasix. I was trying my best to fight having to have brain surgery. From Feb 08 until August 08 I lost over halve of my vision. In this short amount of time I had 4 or 5 spinal taps (each time pressure was higher than the last)two optic nerve sheath fenestration. I finally agreed to go speak with the neurosurgeon. He took about 10 seconds to look over my file and my optic nerve pictures that my opthamologist insisted I take with me. My neurosergeon looked at me and said you need a shunt. You have two options Ventriculoperitoneal Shunt(VP Shunt) or a Lumbar Shunt (LB Shunt). I opted for the LB Shunt bevause to me this meant not having to drill in my skull. He immediately said no. He told me the failure rate in them was too high and if he needed to adjust the flow of the pressure then that would mean another surgery. He told me he tells his VP patients to expect to have to have the shunt replace at least one in thier lifetime and the LB patients to expect to have to get it replace multiple times. So November 2008 I had my VP shunt placement surgery. It wasn’t a bad sugery at all. The only real pain I felt was a slight headache and I was really tender from my neck down to the top of my abdomen. But for me waiting just 6 six months I lost over halve of my sight. And that was totally my faught. All of my docs stressed to me that I needed the brain surgery. I opted to wait. As I mentioned at the start of this post I am at home on medical leave recovering from having my catheter portion of my shunt replaced (the part that goes inside my brain. It was clogged with scar tissue. I continued to see my Opthamologist every 3 months to monitor my vision. He noticed from my visual field study test the I had lost more vision in my only good eye. He called my neurologist from his cell phone while he was in the room with me and they started me back on the diamox and sent me to my neurosergeon to make sure my shunt was still functioning properly. He did a stereotactical shunt study and a CAT scan. These came by pretty normal so we decided to do a spinal tap. Pressure this time was 26. He said we need to revise your shunt. I trust my neurosergeon and his opinion so I said let’s do it. I don’t have very much more vision I can lose. After my surgery he said my catheter was almost completely blocked. What I couldn’t understand was my first spinal tap was a 28 and I had a debilitating headache. This time I was having but the occasional headache. I wanted to give you a small snippet of history with this disease just to say, for all of you all that are just sitting around waiting for answers from you doctors, please don’t. My docs saw the urgency of having the shunt placed, I didn’t. I went from 20/20 vision in both eyes to not being able to see the big E. At the onset of this disease for me, the disease was very aggressive. So I plead to each of you, fight back with even more aggression. I have the most wonderful set of doctors. I live in Columbus GA and listening to all of the prior post of so much uncertainty and waiting for answers. If you don’t feel your docs are fighting for you. You need to find some new ones. Tell your docs to call my docs if they need some help! My Opthamologist is Stephen Henslee. Neurologist is Reinaldo Verson. Neurosergeon is Marc Goldman. These group of men are my angles!

    1. Tiffany, I live in Columbus, GA as well. I also see Dr. Verson, but have Dr. Gorum and Dr. White a my others. Would love to chat sometime to see how you are doing. I am one week shy of a year since my vp shunt placement.

  29. I have a Chiari malformation and was asymptomatic until I was about 5 months pregnant (Dec. 2009) when I started having severe headaches and loosing vision. My neurologist sent me to a retinologist who diagnosed me with pseudotumor cerebri. I suffered through the rest of my pregnancy in pain and mostly on “modified bedrest” until finally devlivering via c-section at 36 weeks.

    My headaches improved after delivery for about a month…but are now back and worse than ever. I started on 1000mg of Diamox daily for about 6 weeks and it is no longer effective. My doctor doubled the Diamox Rx to 2000mg daily and also added a prescription for Lasix (20mg) daily as a stop-gap until we can find another solution.

    I meet with a neurosurgeon next week to update my MRIs and discuss surgical options. Doctors have wanted to avoid spinal taps due to the Chiari Malformation.

    Anyway – I read a comment earlier on this site that someone has been through the same combination of issues and wondered what the outcome was.

    Anyone else have a similar experience to share?

  30. I’m 21 years old and I found out I had IH when I was 5 months pregnant. I’m currently 8 months pregnant now and have had multiple spinal taps to relieve pressure but it has not worked. What I was told by my neurologist is that it appears mostly in heavier younger women. It was hell getting any doctor to pay attention to me and when I started seeing double and actually went blind, i panicked and went to the ER. I had swelling in my eyes and they sent me up for an MRI. No one could figure it out. Finally I was referred to a neurologist and after some blood work, he decided to treat me with Diamox after the spinal taps failed. In the end, I cannot have a natural child birth and this is truly upsetting to me. I’ve been assured that it will go away after I have the baby, I hope this is true.

    1. I know this is an old post but i also have iih and it was first diagnosed in my pregnancy.. did it really improve after u gave birth? I hope you are better now 🙂

  31. i have been very sick for a year and a half now for the first six months the docs said i was nuts.
    then i started to lose my sight and went to the optometrist and she found it.
    i get weekly lumber punchers my pressure ranging from 22 to 30 the highest was 49.with a 2 day post lumber puncher headache and very sore back.
    although the lumber punchers help i only get 2 good days if I’m lucky before the pressure build again.
    i have extreme pressure headaches,nausea,very bad ear aches with popping when the pressure is up,leaking eyes,stiff neck,my head and neck become very hot,loss of balance,weight gain,exercises make it worse also hot weather.
    i had a bad reaction to diomox and was put on Furosemide instead.
    for the pain i take endone.
    i need some one to take charge of my case and help me.
    i live in a small country town and there are three of us.his pressure is18 and gets a lumber puncher once a year the other one has a lumber puncher every 6 months and has a 24 to36 pressure.

  32. It feels great to find other ladies with the same condition as me. I live in Portland Oregon, so I’m being treated at OHSU. I wish I could get in touch with others in PDX. A support group would be great! I’m not really having headaches right now, just going blind. I had an LP yesterday, and it didnt help much. Oh well. I wonder how long before I cant work or drive a car anymore due to my diminishing eyesight. Any hints or suggestions from anyone?

  33. I feel like such a wimp after reading these stories, since I am not in agonizing pain from the headaches – just general feeling of permanently wearing a hat that is too small, but having lots of trouble with my eyes that my optometrist can’t seem to figure out means anything. I’ve been losing depth perception and focus speed for years, and am finding it harder to work on computers or deal with bright lights recently. I also have lots of joint stiffness and a general inability to do anything quickly. I was formally diagnosed in ’01 at the age of 24, and have had two LPs, each with 9-10 days of headache after. Not that the debilitating headaches were that much different from my regular ones except that I couldn’t sit up. My last GP and Neuro both told me that it was all in my head and that I was just trying to get attention, thought the neuro did schedule an LP (my second)to get me to shut up about finding treatment. Most times I function fine, but the depression is what is getting to me. It is really easy to think that I’m only making this stuff up, especially since the pain is such that I have become accustomed to it. I am available at taliessin at yahoo dot com.

  34. I’ve had PTC for so many years that I can’t remember ever not having it. I used to have insurance and get monthly LP’s but without insurance I am suffering. I have constant daily headaches that really kill me.I work 8 hours a day and try to rest during lunch so I can continue on. I take pain pills and not because I want to but because the pain has become that severe. When I had insurance I told the doctor I didnt want a shunt but had the ONSF so I wouldnt lose my vision. I told him I could handle a little headache. Little did I know. My primary care doctor told me I need to see a specialist. If only it was that easy. The cost without insurance would kill me. My primary care doc only charges 45 per visit.
    I wish they can do something to help me. I hate feeling like this.
    If anyone wants to write, (

  35. Hi,

    I have just been diagnosed with this condition and it’s such a relief to find that there are others out there (apparently it’s really rare, a 1 in 100,000 chance!). I noticed that a few of you are parents of youngish girls who have the condition. I am only 22 myself, I was surprised to hear that it’s more common in young girls.

    I only found out I had this problem by chance – I was at an opticians appointment and they noticed my optic disc looked funny, took a photo, ran off to make a call and then suddenly announced to me that I needed to go straight to hospital! I thought it was a huge fuss about nothing to be honest, and had no idea what was going on!

    I have had awful headaches, nausea, double vision and other difficulties, but I suffer from Fibromyalgia so I assumed that it was just that! My boyfriend is studying Optometry, and if he hadn’t persuaded me to see an optician I wouldn’t have found out until my eyesight was much worse!

    How successful has treatment been for all of you or your families? Is there anything you would recommend me trying? The lumbar puncture test showed very conclusively that there was too much CSF and pressure, but they drained a lot. I now feel much worse, got the post-LP headache, but I’m sure that’ll pass. I’m wondering what happens next – I haven’t seen a neurologist yet, and I have no idea what my first appointment with them will entail! I’d be grateful for any advice anybody has!

    Thanks, and good luck to all of you.

    (If you want to respond, please try

  36. I have been recently diagnosed with IH and i have had several spinal taps that have caused spinal headaches after everyone and a blood patch as well.I am on hydrocodone for the headaches which doesn’t even phase them ans 3,000 mg if diamox dailt which doesn’t seem to be working either.This is where i stand as of today.I saw my Neuro Ophthalmologist and he says my eyes are healing just fine and the vision problems will go away but he will not give me a time frame.He gave me a prism to wear and it made things worse.So I just stopped using it.I saw the Neurosurgeon and he stated that since I get a spinal headache after every spinal tap and blood patch he didn’t think I would want the shunt unless the Neuro Ophthalmologist agreed to have it done to keep me from going blind because I would have spinal tap headaches daily with it in.So I am at a total loss.I am very disappointed and frustrated.Do you know anyone who has had the optic nerve sheath decompression and it made their sight worse than it already was before the surgery.I have been 6,000mg of Diamox for a couple of weeks but no change.Has anyone experienced any of this yet?I have double vision,loss of depth perception,blurred vision,straight vision loss and lost all peripherial vision.I had this before my eye surgeries but it has gotten worse since my last surgery on 8/5.

  37. I was diagnosed with IH (PTC) in 2007 after having it since the age of six (it only took 26 years to diagnose!). My daughter who is 8 also has IH (diagnosed almost a year ago).

    I lived 26 years in severe pain with a constant headache and visual problems and was dismissed as being attention seeking. I finally stopped complaining about the problems because I began to question my own sanity, and then figured it must be normal to feel so horrible. When I was diagnosed I was aggressively treated with Diamox (acetozolamide), Lasix (furosemide), Topamax (topiramate), and only ended up with more problems. My body slowly adjusted to the medications and produced even more CSF, and 10 months ago I began losing a lot of vision. Within 4 months nearly all of my vision was gone, despite having optic nerve sheath decopression to reduce the pressure on the optic nerves. I am now 95% blind in both eyes. One month ago I had a ventriculo-atrial (VA) shunt placed due to severe ICP problems, seizures and widespread cerebral atrophy because of the chronic high brain pressure. Even now, I still have to take large doses of Diamox, along with Lasix and Topamax and I’m still in pain. I’ve even managed to lose nearly 200 pounds and still I’ve had no relief.. only worsening of my symptoms.

    I worry that my beautiful daughter will follow in my path, and that terrifies me.

    IH is a nasty nasty disorder that is far under-funded and under-researched.

    To those who commented before me, what your children as going through is not unusual, and constant LP’s aren’t the answer, either. Also, it’s possible for a person to have IH and not have a particularly elevated ICP level, and even to not have papilledema at all. Most of my life I had all the frank symptoms of IH but didn’t develop papilledema until the last 2 years, and only when permanent damage was being done to my eyes. When I had my shunt placed a month ago my LP pressure (on LOTS of medication) was 30+ and yet my ICP level when my shunt was being put in and measured in my skull was 57. My daughter, on the other hand was diagnosed due to papilledema and a clear CT and MRI (I have refrained from having an LP done due to the pain involved).

    I encourage anyone with IH (PTC) to register with the IHRF and to be vigilant about medical care and being sure to follow up with medical professionals (neurologists, ophthalmologist and neuro-ophthalmologists, especially) to make sure you are getting the best care possible. It doesn’t take long to do permanent damage to your eyes, and even your brain, with this disorder.

    Best of luck to you, your children and all of us living and trying to survive with IH.

    (I can be reached directly via email at the following address – ocean (dot) mcintyre (at) gmail (dot) com.)

  38. I was first dx. w/ IH after a kidney transplant (I was only on predinose for 4 days post-op). After months of lasix, diamox was added and it resolved. 3 1/2 years later, it returned with severe headache pain and bilteral papilladema (edema around the optic nerves). This time I could not tolerate the diamox. Had an LP shunt put in oct 08 and headaches plus almost constant ringing with whoosing noise in ears. Neuro thinks its migraines, neuro-opth shows papilla edema back and neuro surgeon does not want to risk surgery again. I feel so lost and confused, the only thing that helps is I know I’m not alone in this!

  39. Dear Susanne,
    My daughter is going through the same hell. We are going on almost a year. Took 9 mos. for diagnosis to hear IH and now medicine not helping at all. Pain meds such as dilotid just take the edge off. I thought we were alone in this.
    I would love to be able to talk with you. I am registering her with the IH Research Foundation.
    I hope it’s ok to post my email on this. I hope to hear from you.

    Debbie Filippone

  40. Dear Susanne,
    My daughter has also been diagnosed with IH after nine months of none test after another coming up negative.
    She has suffered so much with all this. Her first spinal tap was high then the rest normal. I get conflicting theories from doctors. One says she has it, one says she doesn’t, one not sure.
    I can’t tell you how many times she has been in the hospital. They were giving her dilotid which would take the edge off for awhile. She is nauseated everyday, the pressure and pain never goes away. She has no life and was not able to finish her last semester of college.
    She is taking Diamox, amitriptyline, lorazapam for the nausea, neurotin. Waiting for yet another neurologist appt.
    Her veins are shot from all the iv’s. They couldn’t even get a central line in.
    She has dark circles under her eyes. It is really scaring me.
    I hope to hear from you.

  41. My daughter has just been diagnosed with intracranial hypertension. When I read the information on the IH Research site, the iformation indicated that the lumbar pressure does not have to be high to have IH. She has had every test in the book..all negative. But the severe pain she is experiencing is not eliminated by the most powerful drugs. Looking to find someone else that shares this problem.

    1. Has your daughter been seen by a neuro ophthalmologist? If not, I would get her in there right away. They had me in the surgery room the next dayear to keep me from going blind. I will remember you & your daughter in my prayers. This is a tough disease to deal with. I was diagnosed in 2002 was shunted and went in remission for about 6 years. 2010 it came back with a vengeance after I perforated my colon and it infected my shunt causing meningitis and almost killing me. Sincentives 2010, I have had 14 shunt surgeries. I finally had to give up work and draw disability. I wish you all well and may God bless you!

  42. I was tested for it. It requires a lumbar puncture to see if the pressure is above normal ranges. Mine was normal. I was actually hoping to find that this was my answer.. and that a monthly spinal tap would free me of migraines by relieving the pressure caused by excess spinal fluid. No such luck.

  43. I used to have this problem due to a Chiari malformation, and it led to horrible migraines. I had Chiari decompression surgery and it stopped the headaches for a year and a half, until pregnancy brought them back.

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