BIH newly diagnosed....CONFUSION
Posted , 3 users are following.
Hi everyone, i am becki and i am 19 years old. I have been reading a few of your posts and can i first of all say you all sound remarkably brave and like your going through tough times. I really do feel for you all and you have my best wishes!!!
A few months ago i was taken into A & E with an eye infection that wasnt going away. They noticed the pressure, did a lumbre puncture and confirmed that i had BIH. This was 2 days before i was due to go on my first holiday with my boyfriend of 2 years and i was only interested in getting out and getting on that holiday. I didnt really understand what was going on and just let them get on with it. I MANAGED TO GO ON HOLIDAY THOUGH WOOP WOOP lol.
They put me on Acetazolamide tablets and booked an oppointment to see the neurologist. On seeing the neurologist he told me it was weight related. At this point i weighed 17 stone (previously 19 stone before all this but had been loosing weight with my boyfriend to feel better about ourselves).
He said he would put me on Topamax alongside the Acetazolamide to help continue with the weightloss. He also said that loosing the 2 stone already had saved my eye sight.
My problem is that luckyly i have had no problems apart from the eye infection which was unrelated. They came across this by pure chance. I just feel so confused like where has this come from and what is going to happen to me? Am i going to loose my sight? Am i going to have all of the side affects i have been reading about? The headaches, sickness etc? and need surgery? Doctors are been useless. I dont understand anything!
I am really struggling loosing weight too. The topamax are not doing anything!
I am a teacher trainee in my second year at uni and the pills are wearing me down. I feel like rubbish. Im so horrible to everyone. They are giving me headaches, whereas i never ever had them before. I cant sleep at night but im shattered and cant wake up at day. It effecting my work and my assignments are not getting done.
I dont no what im asking of you really but i jsut do not no what to expect or where this condition is going at all. My main concern is that i am going to loose my sight. If anyone can offer any information i would be so so gratefull.
Im really sorry to babble on. All my love and best wishes to you all.....Becki xxxxx
1 like, 3 replies
Guest
Posted
i have been suffering for years,i am on the same tablets,they do work for a while but i still have to get lp's done every 6-12 months which is a pain
i am 43years old so alot older than you,keep asking the doctors what they can do you have to be onto them.
anniebrain123
Posted
Guest
Posted
I'm Sid & I'm 33 and I was diagnosed about a year ago, and I seem to have a much milder version then most people on the site (either through luck, or because if was caught earlier. My optician noticed a problem and referred me straight to the Eye and Ear hospital, who sent me straight to the A & E where I was admitted, diagnosed and treated - CAT scan and lp that night and referred to a neurologist straight away). Like everyone else, it seems to be quite hard to find information on it, and every doctor you speak to just says oh its because you're overweight. lose the weight and everything will be fine.
At that stage, I had in the previous 4 months lost about 3 stone, although, so I don't know if that actually is the case or not. It seems likely from what I have been able to determine that if the medication works, you (or me in this case) are very lucky, although the side affects can be quite bad. I'm on Acetazolamide and get quite bad headaches nearly all the time, as well as pins and needles in my hands and feet, sometimes feel nauseous and am tired alot. But its definitely better then the alternatives, so I am very thankful that they seem to be working, and at every check up I'm advised that things are going okay.
My dad was a nurse though, and he was able to speak to a different doctor who was aware of a case of a young girl who had the condition, however, and she did grow out of it and was able to stop taking the medication entirely. So your age is acting in your favour as well and it may be that everything will clear up for you with some time.
That being said, a lot of people who get this condition, even if they recover from it, many of them get it again at a later stage, so its best to be vigilent about it.
I hope things go well for you.