I have been battling this condition for about 4 years now. It took 2 years to get an actual diagnoses. 1 year of me ignoring the problem and the next trying to convince every doctor I saw that I was truly suffering. I was 23 and pregnant when all of it started. It was my 2nd pregnancy and I started having complications at 19 weeks. I look back now and realize that I went from what I would consider "average" weight at 146 to almost 200 lbs. The majority of the "weight" was swelling and soon after I delivered I immediately lost 30 lbs. However, I felt like crap. I was sick all the time. I like most doctors thought it was all in my head. That is why I waited so long to talk to someone. The moment I did try to get help that is exactly what I was told...It was all in my head. I was just stressed. A stay at home mom with 2 little girls and a very unsupportive husband.

My weight started creeping back up. I topped out at 200 lbs and this time I could not blame pregnancy. I was sick, exhausted and I ate too much. I began seeing a family doctor who ran a ton of blood work and of course everything came back fine. Here is where I am still confused. My symptoms where vomiting and feeling nauseated. I think back and I am not sure if I ever told my doctor that I had a headache. My number one complaint was feeling sick to my stomach. The beginning of 2010 I started throwing up multiple times per day. I rapidly starting losing weight. Towards May of 2010 I was throwing up more than 15 times per day, which does not even physically seem possible. In one months time I lost 30 lbs.

I went to the ER where they very unhappily admitted me, did an upper GI and found nothing. After treating me like an insane person, they sent me home. While sitting in the passenger seat on that ride home I realized that everything was blurry. I thought it was the medication I had been on. By that evening while watching TV, I began to panic. I was seeing 4 tv screens. By the next day I could barely see anything. Confused and still in denial I went to the eye doctor at Wal-Mart. He helped me more in that one visit than a year of doctor and hospital visits. He looked at my eyes, told me that both of my eye balls had been pushed forward and that I needed to see a specialist asap.

That visit to the opthomologist began like so many other doctors visits. He started to make light of the situation until my mother spoke up and told him that I had been vomiting non stop and had lost 30 lbs that month. He looked at me and said I know exactly what is wrong with you. From there everything started happening really fast. He called my family doctor right in front of me, explained the urgency of the situation and I got a much coveted appointment at Barrow's Neurological Institute. They got me in the next day and by that time my eyes had completely crossed, I could see colors but not much else.

Again that appointment started off like the rest. He was a younger doctor, very arrogant and made a comment about how young I was. Only when he turned off the lights and looked in my eyes did he start treating me differently. He left the room and came back with a much older doctor who began the whole process of looking into my eyes again. They then told me that I would be admitted to St. Joes that day. The neuro resident that did my lumbar punctur after I was admitted, screamed when the pressure and fluid popped across the room and hit the wall. The roller coaster ride the 2 weeks I was in the hospital was scary, lonely and I didn't know what my future would hold. They ultimately decided to put a shunt in my spine.

I wish that I could say my story ends there. However, it doesn't. I have been sick every day since. Some days are better than others. I had to have a shunt revision this past October and now I have 2 shunts in my spine. The first one became so imbedded that they had to leave it because of the damage they were afraid it would cause. I have nerve damage from both surgeries and I am in constant physical pain.

I feel at the end of my rope. I will be 27 in April, I am now a single mom to 2 beautiful little girls. I work 2 jobs and I am about to have to quit the main source of my income. I am missing to much work due to being ill all the time. I have missed 27 days of work this past year. My employer asked me to come back knowing my illness and a year later she is tired of it. I can not offer her an hope that I will be or feel better.

Here is where I am confused. I was not sick like this before this condition. However, after my surgery the pressure behind my eyes and in my brain is coming back fine. Why am I so sick? Why do I start off most mornings puking? Why am I so easily getting infections? Today after I worked, I had to miss a staff meeting because I have strep throat. I have been running fever all day. I am losing faith in myself, in doctors and in my body. I need to know if I am alone. Or if there are other people that struggle with their health after surgery and a diagnoses? Like most people that are diagnosed with pseudotumor cerebri it started off with me being over weight. However, I have maintained a healthy weight of 146 for almost 2 years now, at 5'2 my doctor tells me that is a healthy weight and no longer contributing to my condition. I know this was long, I know maybe even confusing, but I am at a lose over where I go from here....

amberdnae,

I'm so sorry that you are going through this.

I had iicp, increased intracranial pressure, for six months because I sustained a concussion. It made me very ill. And it may have damaged my brain further than the initial concussion had, but there is no way to know. All of my muscles atrophied because I was in such severe pain that I could hardly move during those six months. Although I don't have iicp anymore, or pseudotumor cerebri, I know how awful it can be because I experienced it for a short period of time. It was the most grueling experience of my entire life.

You are not alone.

Have you contacted the Intracranial Hypertension Research Foundation to see if there is a support group in your area?

Here's a link: http://www.ihrfoundation.org/

Pseudotumor cerebri has many names, and hydrocephalus is one of them and that's how it's labeled on this forum. I'm sure you can find other sufferers of this condition on this forum in that section. Found here: http://neurotalk.psychcentral.com/forum14.html

Much love and luck to you!!

I have been diagnosed with pseudotumor cerebri since 2007 I am 16 now had a total of 7 spinal taps and am now starting to lose my speech from brain damage. I'm 142lb at 5'5 also very healthy height for me. When I tell people about this disease I tell them its the disease they slap on people when there not quite sure what to do... I suffered from head aches my whole life basically from the age of 5 and they didn't listen to my parents till I temporarily lost my sight in '07. So just like you I understand your frustration of losing faith in doctors, we know what's wrong with our bodies when we walk into the ER, they look at us like there's no way, like we don't kno what were talking about so we suffer and get further damaged and get our lifes taken away from us with medications and procedures with no results. On day you and I will have our peace from the nausea and head aches and distress though miss, that I believe. I've been against getting a shunt since my diagnosis but have recently lost this fight with my last check up with the doctors findings of brain damage.. I am scheduled of a consultation for an emergency shunt placement and I'm scared. I'm a teen a honors student and a patriot, because of this disease I won't be able to achieve my dream of joining the marines. You are not alone in this never ending battle hun... stay strong...

Hey guys! i was diagnosed with IIh/BIH/PTc/ICP - whatever you want to call it- in 2009, after 3 years of constant headaches. I was treated with acetozolamide and regular lumbar punctures for 6 months. the headaches never eased tho and my pressures remained in the 30's. Drs decided i was having migraines and treated me for those, without success. You don't wanna know what hell that put me through!! Last august i had a worsening headache with visual problems and went to see a new GP. she looked in my eyes and sent me immediately to the ED. About 10 drs marvelled at the back of my eyes and then did an LP. my pressure was 17....wtf??? i obviously had papillodaema in both eyes but low pressure..... YES THEY MADE A MISTAKE! That was the closing pressure...... Any way after 7 weeks in hospital, 13 LPs, and 4 grams a day of diamox, my pressure still rose every 24 hours to over 30... At one point it hit 80 and they packed me into a plane flew me to a major city hospital.... Any way i had an LP shunt inserted in October. Headaches improved but not my vision. After 4 weeks i felt really crook and went to dr who discovered my shunt had popped out of my abdomen.... explained my swollen belly! It was revised and for past 5 months i've been headache free. My vision stabilised but my right eye is permanently damaged and does not focus. My major problem is the shunt placement in my spine. I've had incredible pain since the revision and have developed lots of problems. My legs are weak and i often fall down; i get numb legs and excruciating pain from my back to my feet. And, this weekend, i think the shunt has again popped out of my abdomenal cavity as my belly has started to swell again. swear i look 9 months pregnant with quads by bed time!! so its off for more tests tomorrow....

Sooooooo, would i have the shunt surgery again, if i could go back? Yes.... the headaches made my life hell for years. i was in hopsital more times than i can count, i lost my speech, my vision, my ability to use my left side, my sanity, my job and my life. Now i feel well, although i am in pain it is manageable. the most frustrating thing is that i feel well and i'm now limited as to what i can do physically.... If i need to have the shunt revised again i'll ask the surgeon to move it in my spine i fpossible. might help with the problems.

If you ever need to vent then feel free to vent at me... I'll probably jooin in.
hope you are on the improve

cheers,

Lala )

So sorry to hear of your plight. I too was feeling hopeless. I finally found answers from my own research because doctors wouldn't listen and nearly killed me in the last 4 months! The nausea is probably because of a combination of your headache and the fact that you are not reabsorbing the CSF fluid correctly and it is building up in your abdominal area. Do you feel swollen/see it? I could, but the doctors couldn't--said it was normal swelling (20 lbs, rallly?) and noone would listen. I know I'm chunky (200 lbs) but there's a difference and you can see it. My plight was similar to yours. I had 3 revisions within a month to my LP shunt before they realized I wasn't reabsorbing right and the fluid kept backing up and causing the tubing and valves to leak. Last week they finally pulled my LP shunt out (like yours leaving part of it behind because it was embedded), and installed a VP shunt through a different incision in my chest. It seems to be working so far, but my fingers are crossed. I am a teacher and have been out of work since Jan. 19th....it has been very difficult for my family. My two children 7, and 13 have seen me go in and out of the hospital, and my poor husband who works long hours has had to do even more to take over the house as well. I don't like the feeling of all the hardware in my head though. I can't even lay on my right side because of the tubing and valve underneath the back and right side of my skull/scalp---which is why I'm hear, to find out if this is normal. But I suppose, I am alive, I haven't lost any more vision other than the initial left eye peripheral, and the headaches seem to have dissipated. So it is a tradeoff, and I'm happy for now. Can you talk to your health plan about getting a second opinion at an ACADEMIC facility (they are usually more up to date on research), and maybe have a VP shunt put in instead of the LP? Lots of problems with LP if you do your research! God Bless and you'll be in my prayers!

I was diagnosed recently only because I went to the eye doctor. My eyes haven't been dilated in years so they decided to check up on them. It was actually the doctor who deals with contact lenses who found the problem. He said that my optic nerves were extremely swollen and that it could meant that a brain tumor is pushing up on them. He wanted to schedule me for an emergency MRI or CT scan of my head. But it was already 5:00 and offices were already closing for the day. This was a Friday too. So all weekend I had the words in my head of "brain tumor" and "possibly going blind". Monday finally came and I had an MRI early that morning. I also had my first appointment with my neuro doctor that afternoon. He explained to me a little bit about my scan and there were no tumors or anything. I didn't expect it, but he wanted to do a spinal tap to test the pressure in my head right there in the office. This was the first of many to come.

The first tap went smoothly and I was only uncomfortable for a couple seconds. The pressure reading was over double the normal pressure number. My second tap was in a different office at a different part of town and my doctor had a student or trainee with him. I think that he was trying to talk to much and explain to her what he was doing and it ended up not being where it needed to go. After fishing around for a while with me having shooting pains from my ear to my right knee, he finally got a reading and the pressure was even higher than the first tap. This made no sense because I started the medication diamox and was expecting it to be better. He double my medication intake and I wasn't seen again for three more weeks.

The next visit, was unbelievably painful. He numbed the area three different times and went in three different times attempted to find where he needed to be. I couldn't take it anymore. I have a pretty tolerance for pain but this was just crazy. Finally he said that he just couldn't get a reading for the day and I basically went through all that for nothing. To him though, my eyes looked better. He wanted me to meet with an eye doctor that day to confirm with their equipment that my nerves are improving. After 4 hours at another doctors office, the eye doctor that my neuro doctor knows, said that to him they look borderline between healthy and swollen. At my first visit, they were way off the chart and swollen. This was good news.

Eventually I have to go back and try for another spinal tap. Just thinking of it makes me quiver. I guess he has to confirm that the pressure is down. The last thing I want is to loose my vision.

The symptoms I've had seem to be improving lately. I do have, however, many side effects from the drug. My legs will go numb at any given moment and my face and mouth will feel droopy. My eyes will feel like fluttering behind my lids and my fingertips will loose all feeling for moments at a time. The headaches that I've had for years seem to not be as bad and less frequent. I'm working on loosing weight. When I was diagnosed I was 5'5'' and 180. Currently I'm about 165. In January of this past year I topped out at 200. I also had the nausea and the dizzy spells. I pretty much had to just lay down with a wash cloth over my eyes so I wouldn't see the room moving. I guess I'm just curious about what a shunt is. and if all of you are experiencing the side effects from diamox. I don't want to have to do anymore spinal taps. When the first was so easy, I thought I could handle it but after the last two I'm not sure.

I wish more doctors understod this condition.. My nuerologist and nuero opthamologist both understand it well. But it gets tiring when you have a headache nonstop,neck pain,vomiting and dizzyness so severe you visit the ER and they basically tell you there is nothing they can do. NOTHING? really. For me Having a spinal tap and a bunch of fluid drained seems to make a big improvement.. but it only lasts a few days before I need it again. We have tried Diamox but the side effects were too much. Then we tried prednisone.. I gained A TON of weight.. which made things worse. Now we are looking at a shunt. So tired of explaining my headaches to the ER people when they get that bad.. even phnetanyl wont touch these!