IH and Me

I went to what I thought was a routine eye exam (with my 4 year old son in tow, he wears glasses too) on Tuesday [March 4 2008]. The optometrist FREAKED OUT and started talking about brain tumors and MRIs and spinal taps in the middle of my exam. I did have an MRI that day, and a day and a half later, was told that it was 'clear.' I was then scheduled for a spinal tap that Friday morning. At that point, I had no idea what was going on with my own body, but according to local doctors, it's this pseudotumor cerebri thing... I had been going to my PCP for headaches for a few years—and was being given migraine meds (which did NOTHING) and thought I might be having some hormonal issues...but then the eye exam revealed papilledema, and everything sort of fell into place. According to Dr. W, the opthomologist, the nausea, vomiting, diarrhea, headaches, blurred vision, etc, were all symptoms of either a tumor (which we know now I don't have) or IH...
After a harrowing couple of days wondering what we would find out, Friday, and my first lumbar puncture, finally arrived. I don’t think I’ve ever been as happy to see a needle.  The doc said my opening pressure was 51, which, as he said was more than twice what was considered normal for my 'size.' (He said normal was 18.) They drained two huge tubes of fluid (no idea how much exactly) and said that would help with the headaches for a while. They put me on Diamox (1000mg/day) too...and they said I need to lose 10-20 pounds. I asked if he knew of any studies showing significant improvement with weight loss, and he said he'd ask his colleague--apparently he didn't have extensive experience w/PTC but this other guy in the clinic does, so--and he'd get back to me on that. They did 'officially' diagnose me with PTC...well, the doc said 'beigin (sp?) intracranial hypertension'...but I dislike that name.

I have been blessed with a team of doctors who, while they may not be the foremost experts on IH, are doing their very best to fight for me and doing everything they can to meet my needs and make me feel better. They are always there for me when I have a question, which is often. As it is a learning health facility, there are interns everywhere. I feel like I should allow any and all of the interns and students who want to either see the papilledema or ask me questions to do so—if for no other reason than that they will have *something* to call to mind should another IH victim come to them for help later on. Who knows? They can’t learn if they don’t see/hear it.

As time goes on, and I begin to get a little more used to life with IH and Diamox, I find out new things about myself, like my newfound sensitivity to temperature changes, strong odors, bright or flashing lights, and other sundry and irritating things.  Losing weight seems like a bit less of a battle since I can no longer drink soda (to which I was formerly addicted in a bad way), cannot really eat much at once, and most things I shouldn’t eat (like sugary syrups) taste like they’re filled with minuscule bits of metal or some other foul and chemical flavor.

Just like anyone else, with IH or without, I have good days and bad days…I just measure them a bit differently. On good days, I don’t have pressure spikes that cause my personality to change in an instant, I don’t feel like my body has been taken over by an alien being, and I don’t feel useless. I can speak in complete sentences and even remember where I am going or what I am doing for more than three minutes at a time. On bad days, I lash out at loved ones or even strangers for no real reason, eat everything in sight or nothing at all, cry for no reason and smile in the next breath, even blank out altogether, impugning my own intelligence. On any given day though, I love both my sons unconditionally, adore my husband, and do my very best to do all the things I did before IH chose me. I am still me on the inside, even when it doesn’t show much on the outside. I will still fight tooth and nail for any cause that stirs me, including my right to adamantly refuse to accept that my weight is the only reason for my IH diagnosis.

goofygoober168 goofygoober168
10 Responses Jul 19, 2008

I was dx with PTC in 1995 and had a lumbar peritoneal shunt best decision I could have made. Not many neurosurgeons do this procedure but I was blessed with one who did. Occasional headaches over the years but my PTC has mostly just been a bad memory.

I have been through it all and welcome any questions.

Here is my new website to help promote IIH hope you enjoy,


wow! You put into words what I feel. I cannot explain this disease to people who dont have it because its a disease they cannot see! Thank you soo much for sharing!!!

my son was diagnosed feb this year with iih and so far iv found little information about this illnes but i have found a fantastic iih support group based in the uk that are more informed than any doc we've seen!!! as to weight loss any weight loss can only benifit you but it has been shown that only 6% of ppl with iih have thier symptoms improved through losing weight..got this info from the iih research site!!!...my son is currently on diomox, 3000mg daily......good luck 2 you and i hope u have far more good days than bad.....also if u r having trouble finding information to share with family and friends about your condition go to this site http://www.asbah.org/ASBAH+Community/informationsheets as it has loads of info on iih

b-strong! God bless you and B-Strong! We will find a cure. I too suffer from PtC or IIH. Which ever you like to call it. To me I wish I did not know anything about this. For the medical persons that helped me I owe them so much. My life was spared by the grace of god. If you would like to hear my story I will tell upon request. I dont like to tell my story often b/c people laugh at me and say What the hell is that. I have never heard of such a thing. Its not a real illness. Its ALL IN YOUR HEAD! This hurts to the person suffering! I am truly sorry you too suffer. May you be blessed.

I remember being so scared in the beginning too, new words, new places, strange proceedures but now it's just the way things are. Somedays are good and some not, for me it was not the end just different. <br />
Good luck

i relate so much mine was a routine check and i had an emergancy CT scan to check for brain tumors. Tough for a 13 year old to take in and i was 12 at the time,

Sorry to be so late in responding to you both...I've been out of pocket due to IH and other health related issues. <br />
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Re: Driving...it really depends. I can drive, as long as I'm not over tired or on pain meds. <br />
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Weightloss: I've actually lost about 80 pounds since 1.5 months before my diagnosis...and if anything, the IH symptoms have gotten worse, not better. That's just me though (and I do have other, un-related health issues) so don't be discouraged. If you could stand to lose a few, do so. It does help some people. Won't hurt to try it. <br />
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If I've missed anything, please ask.

Sorry to hear you are suffering too. I'm heading down my own IIH path as well. My headaches began in July 08 and I was finally diagnosed in October. At my first spinal tap, my pressure was 390. I thought my doctor was going to fall out. He got the pressure down to 220 and I started the Diamoxx too. And I feel your pain of missing soda. Unfortunately the meds haven't worked for me. It's taken another month for my medical professionals to get concerned but they are really in high gear now. My second spinal tap showed an increase in my pressure which was back up to 330. I am going to see a neurosurgeon Tuesday for shunt evaluation. It's nothing I'm looking forward to but I would like to have a pain free day and the ability to trust my intellect again. I'm losing vision alarmingly fast now, so I have to do something quickly. Good luck with your weight loss, I sure hope that and the medicine works for you!

Hi Goofy. <br />
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You have no idea how happy I am to see your experience on here. I am not alone.<br />
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I have been having mood swings, headaches, nausea and unexplained aches and pains for as long as I can remember. Everytime I go to the GP it was the same story...depression.<br />
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3 weeks ago (Sept '08) I took a week off work to do some study for my exams as I have been struggling to balance everything what with feel rubbish and all. I had been blaming my sore eyes and blurred vision spells on just being lazy but my boyfriend recommended an opticians appointment so I went the same day.<br />
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As soon as I said "blurred vision" they did a pressure test and it came out at 25 (it should be 18 or 19 for a normal person). Straight away I could see his face looked worried and he explained that he was going to call the hospital for an emergency referal. Well within 24 hours I was admitted and in hospital having CT, venogram and lumber puncture to rule out other causes of papillodema (unfortunately they weren't expecting my pressure to fill more than a tube and they didn't connect them in time so they couldn't get a reading and am due for another). I was just so relieved to discover I did not have MS or a brain tumour or a clot in the brain I thought no more of it. <br />
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Until my GP signed me off work and told me to inform DVLA and not to drive. <br />
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It hasn't yet sunk in there is something properly wrong with me especially as I kept telling everyone it isn't serious so they didn't have to worry. I am waiting for my neurologist appointment in 3 weeks time but have no idea how all this is going to affect my life. To look at me there is nothing wrong. No one (outside of the medical profession) has even heard of this illness. To my friends and family and work colleagues it is like I have swapped one, unexplained, invisible "invalid" illness for another. <br />
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I am waiting for treatment but don't know what I should be doing in the meantime. I am not allowed to work, cannot study (so I have applied for deferral), cannot read, watch tv feel tired all the time and am bored and scared. <br />
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I see you are coping and determined not to let it ruin your life but seriously what can I do to make it go away? Will I be allowed to drive again, I can't sell my car as it is on Hire Purchase contract?