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 Paula

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scoobysnack9
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PostSubject: Paula   Fri Jul 23, 2010 9:04 am

hi im paula from the suffolk area. i was diagnosed in march time very quickly i had balance problems so went to gp where i got vertigo tablets which didnt work. then started to get head and neck pain, off to gp who said go up hospial for xray when you can as she thought it could be arthritis. all clear. so i thought i would trot off to good old specsavers and sure enough they did i had paps in both eyes and was sent up the hospital who didnt tell me what was goin on and tey even reserved a bed for me without asking me then i had a nuero come round say i needed an lp but needed an mri scan to make sure i havent got a tumour. hit me with a little hammer on me knees lol and i had to follow her hands blah blah blah. this was all on a wednesday. On thursday day before bank holiday weekend after promising me mri and lp, they said sorry cant fit you in go home and comme bac tuesday for mri. So went home friday afternoon by night i was at emergency dr,s head was really bad he prescribed naproxin which i couldnt get til next day . went back tuesday for my mri and told to go home and wait for my results. well i had looked up paps by then so knew what i could have good old google . as i was feeling worse i was not in the mood nor was my boyfriend or daughter who was with me so asked tio see dr and told her what i thought so i was admitted and had to wait in a chair for 8 hours, im sure they done it for purpose but i was not to be beaten next day had mri no tumour and had an lp and it all went. Bliss. for a while anyway . has a failed lp about 3 weeks ago got one in early august under xray. not feeling as bad as i was last time but continuous headache in eyes and nausea. im on diamox 250 mg twice a day and painkillers and nausea tablets when needed. my memory is my brain says 1 thing my mouth another. anyway hi to eveyone and am glad i joinned this site
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PostSubject: Re: Paula   Fri Jul 23, 2010 8:09 pm

welcome Paula, thanks for joining it's lovely to have you here. You really have been through it haven't you :quiet: , it comes to something when it's YOU who have to give your doctor an diagnosis.

I still can't believe that this condition has been seen in the ?UK since the late 80's, and yet most of us are still being diagnosed by Opticians. It was my Optician who found that I had swollen paps, even though I'd been seeing my own GP for over a year.

You'd think by now that there were clear outlined rules of thumb, that all GP's would have in order to correctly diagnose IIH, and then refer you to a Neurologist, instead of you having to go round the houses first just to get there. The time it wastes is ridiculous, especially when it comes to the affects and possible damage to your optic nerves. censored censored :Angry:

I'm so pleased that you have been put on medication and being properly treated now though, and hopefully things will improve for you. As for mouth vs brain, it's a common in all of us that we mix up words, forget words and at times talk total nonsense. I think that's due to the pressure on the brains lobes and things.

How are you finding the side effects of the Diamox? I know the pins and needles, tingly feeling in your hands and feet can be difficult to adjust to, as well as the feeling tired all the time. Some side effects should settle down in time, but if they get too much to bear mention it to your Neurologist.

It's good to have you here and I look forward to reading your posts for you hug
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PostSubject: Re: Paula   Sat Jul 24, 2010 9:40 am

thanks heidi yes i think it is worrying that optitions are diagnosing it but thank goodness for that. Mind you i have heard some people with iih has no paps and still get bad eyes. And tey say you havent got iih as you have no paps but thats rubbish and no help what so ever to the poor people whose sight is getting worse. Lucky so far my eyes are good but if i started to get visual disturbances i would be straight back tryin to do someting i,d beg, cry, get in a temper anything i think its disgusting that some seem to take there time over this with appointments when are eye sight is so precious. dont know if i could cope without mine as i drive and i would hate to lose that independance. The diamox i have found not to bad the tingles in feet and hands are wierd but i can put up with that, once the top of my legs vibrated it was really wierd . Also with my hospital the 1st time i needed 2 pints of blood my red cells were very low i was exhausted and sleeping all the time and they still sent me home. but i had my 2 pints when i was admitted the 2nd time. . i feel lucky compared to some people who really do have a bad time. at the mo headaches in my eyes are continuous and my eyeballs feel so bruied and makes me feel sick so off to dr,s monday as i had some naproxi left over from the emergency dr and have been poppin those but they wont give me no more til i go in and see what meds etc i can take with what i am on. As i m on anemia meds a well. I dont like normally making a fuss but i got no choice as i need something to take the edge off, any good painkillers can any1 recommend til monday. thanks for reding paula
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