me and my BIH

Brain and nerves
1

well about this time last year i started suffering from BAD headaches, blackouts, diziness, wooshing noises in my ears after putting up with this for around 6 months i took myself to the doctors in which i was told i was suffering from migraines and prescribed me some painkillers, these painkillers were about as much use as a chocolate fireguardafter another month or so i went back to the doctors and was told i was suffering from tension/stress headaches, again i suffered for another month or so, i then went back to the doctors and they then said that i was probably depressed so prescribed me antidepressents which were also used to treat pain this went on untill the begining of december 07, when i went back to the doctors explained the pains i was getting, i was blacking out when the doctor decided to put me on the sick for 2 weeks, on return to the doctors i fortunatly managed to get an apointment with a new doctor who happened to be a trainee after i explained my symptons and how long this had being going on, she decided to send me to a neurologist about 2 weeks later my appointment came as soon as i saw the neurologist he check me over after 10 mins decided i needed to be rushed through to the hospital for tests as the backs of eyes were swollen( papillodema), the neurologist wanted to see me in the next 7 days. i went to the hospital had an ct scan which came back clear (which was fab as i convinced myself i had a brain tumor), i then had a lumbar puncuture performed which i thought would be painfull but not to the extent in which it was the first person put the needle in the wrong place which was absolute agony, they then topped up my local anasthetic and tried to do it again with no sucess again more pain, third time lucky they say well it was they finally maged by getting me to sit up and bend over a table once the need le was in they got me to lie down (quite dangourous with a 9inch needle sticking out your back, they confirmed i have BIH as they removed 6 tubes with over 44? of the fluid, i was then told to take it wasy for the rest of the day. after 1 1/2hour bus ride home i was laid up in bed for 4 days with the pain from the lumbar pucture but nobody informed me what would happen next, treatment for this condition so i was still oblivious to what was going on in my head literally today i went to see my G.P who contacted the neurologist's secretary to see what was happening re results as the GP has not seen this case before and it is a rare condition, with still no resolve as the GP was informed they would contact him in the next 48hrs to let him no the outcomes. But when i got home and checked the post there was a letter requesting me to go back to the hospital on the 5th febuary at 11am i have no knowledge of what is going to happen at this appointment as the ward is only open a few days a week so i am going to try and contact them myself tomorrow

please wish me luck........and if anyone has anyinformation on bih i would really appreciate this thanx

remember BIH may be uncommon but you are not alone!!!!!!!!!!!!!!!

:D [/code][/b]

2

Just browsing the pages and seen your entry, what a lot you have been through and are still ging through. I get really annoyed when doctors just don't listen and they put you on so many different meds without even telling you what they are for, what they can cause, they just prescribe. I often feel like they don't listen and you feel like they are taking up their time. I am having problems with severe head spasms at pres, seen 4 dif docs and none listened, the seen another, he was great, was to see him last monday to review things, would you belive he had fallen and broke his leg during hill walking that wknd, I then seen old frosty face who did not listen or ask anything. I am so glad you seen a fresh faced new doctor who listened to you, I wish you well and hope things settle down for you. Karen (Ps, sorry to go on, just rather angry with things at pres!) x

3

i knwo exactly wot ur goin through i ahve had it for 10 years now luckily u will probs be given the drug that will help it but unfortunatly there are a very rare few that area llergic to it like me! i have my appointment at a doctors tomoz its anew hospital as i was under great ormand street butno im too old as nearly 18 i have had plenty of tests which i can tell u more about if u wanna knwo more get in contact with me. ur welcome to any time i know how it feels x

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4

i ahvthe condition now for 10 yearts so i knwo how u feel the thign is u may be lucky and given the drug that will cure it unless ur allergic like me but thats ree rare and they dont knwo how there goin to cure it now! i have had loads of operations and tests but nothin has helped so i knwo how u feel im now 17 nearly 18 an its till goin on recently moved from great ormand street to the london nerological and nerosurgical hospital! and my first appoinment is today im very scared well i hope all the best for u io knwo wat its like if u want any more inforamtion then rite bk! x

5

well i went back to the hospital on the 5th feb had another lumbar puncture and the pressure is still 44cm so they have now started me on some tablets which are giving me pins and needles almost everywhere(very irritating) and the headaches etc are still there with no sign of going anywhere at present just feel like going arghh well thats me until monday when i go back to see the consultant for another lumbar puncture!!! :cry: