benign intercranial hypertension

Oh you poor thing, my suggestion to you is to go back to your GP and get a new referral to a different neurologist. I have had 4 and finally found the perfect one. To be fair though there my situation was different as the first was semi retired so he could still see patients but couldnt perform procedures the second was too busy hitting on my mum to be bothered with me and the third i had for years before her career took her on a new path.

To answer your questions about popping ears, everyones symptoms seem to vary. My ears dont pop but they do feel somewhat blocked at times.

The bloody noses also something we have in common.

Definately get a new neuro, if for nothing more than your own sanity, this disease is frustrating enough without feeling the way you do. You need someone you feel you can trust, i am also overweight but my neuro doesnt rub it in he knows i know it and only brings it up every now and then just to remind me that it is or can be a contributing factor.

The stabbing pains are one of the worst symptoms but with the diamox mine tend to lessen at least for a while. Just long enough to feel human again. Have these not been prescribed to you? my doctors have never had to prescribe pain med to me as i found a good over the counter one that works for me but i cannot function when i have had to take them as they make me quite drowsy. Because of this i only take them when the pain gets unbearable. Hope atleast some of this helps, thinking of you.

hi there i am so sorry to hear what u are going through right now.My BIH started when i was 27 over 30 years ago. My first shunt lasted me for just one year 2nd shunt lasted 4 years and then my 3rd shunt lasted until 3weeks ago and that was 20 years, i am now 55 forgot all about the BIH untill that is about 7 weeks ago, went to my GP with real bad headaches, nah he says not that it has been over 20 years since u had a problem, after weeks of telling them it felt the same, like u no one was hearing what i was saying. To cut a long story short i took myself off to local A&E . Even then they were saying cant be that after all this time, anyways they put me in hospital where i was transfered to the Royal Free hospital in London ,lumber puncher was done i think more to shut me up, anyway pressure in my head was 36 as we all know should have been around 15. Anyways had me knew shunt fitted on 28th Aug 2009, i am now home and on the mend. What i say to u is fight for what u need, keep on going dont let them fob u off, and just one more thing since having new shunt fitted i donot take any medication free from pain. Slight damage done to my eyes, but i blame GP for that he waited and waited, but again nothing that would stop me from doing anything i want. Good luck and keep going xx suzes

Intracranial Hypertension Is one of the most sh*tty disorders. i have had it for 12 months and for the first 6 months they said i was crazy and that it was all in my head (it was but psychiatrist cant do lumber punchers).

i have weekly lumber punchers and take 40mg Frusemide.

my pressures are in the high 40's on a weekly bases.

Diamox Makes me so ill i feel i will die.

I have seen so may Doctors but most don't seem to have any real solution's(lose weight & drugs)

but the more exercises you do the worse the Intracranial Hypertension gets and being in bed all the time dose not help.

i get about 2 good days a week if I'm Lucky , cant work and have had to give my kids to my Ex.

this Sunday a felt a big pop behind my left eye then a warm rush went to the doctors (they did nothing again) said my eye looked fine.

when i had my weekly lumber puncher the pressures was 19 down from 45. so something behind my left eye has split .

i again went to the docs and i was told i was strange and i should be happy that my body has fixed it's self.

Why is no body worried that i have brain fluid leaking into my eye socket.

when my pressures up my ears pop and my eyes leek.

and the pain is about 8 to 9 out of 10.

they wont do a shunt till i don't get better by weight loss and drugs. so 6months on still suffering.

i would love to know if any one else has had this leek behind the eyes.

gook luck all Tara

Hiya.

I started with popping and ringing in my ears, constant pressure as well as them being extremely painful in August this year. I am still on Dihydracodeine 6 x a day for this.

I was diagnosed with BIH last month and have since had a 3 lumbar punctures and an LP shunt fitted.

I have had 2 occasions already where they thought my shunt was blocked, and now do not trust it all all.

I have been told by my eye specialist that my side vision is permanently damaged and that I will never be able to drive again. This may continue to get worse, and I am going to see them again next week to see if I require optic nerve fenestration.

I feel very similar to you and can't see any way of returning to my very hgh pressured job as a Children's Nurse, but they still seem to think that I will improve with time.

I have been told that my ears problems are unrelated to my BIH, but no ENT specialist is willing to do tests, due to my shunt!

I also have trouble with losing weight, due to constantly feeling sick. I can only eat what I fancy, which is usually unhealthy. I am still occasionally unable to keep food down, which has caused me to lose 2 stine in 2 months, but isn't the right way to go about it!

It was really good to hear that someone else was experiencing my problems as I didn't believe that it was unrelated.

Hope you get sorted, as do I x