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My experience with IIH.

Jan 24, 2009 - 2 comments

I`ve always been pretty well and fit,I work as a Postman and have done so for 21 years now,the only time I ever had to go to hospital was in my 20`s for a sinus operation which was just a day job.
All was fine until I turned 40,first I started with having pains in my stomach and it always felt like my stomach was full of acid,so I went to the doctors he gave me some pills,I was off work for a couple of months though until I felt well enough to return,that was in March 07.
I was okay till the end of July 07 when I started noticing that my eyes seemed to be having trouble reading the house numbers or house names across the street,I also always seemed to have a bad headache but I was having alot of trouble sleeping at the time and just put it down to lack of sleep,after another week or so I decided to go to my opticians it was here where they spotted I had Papilledema in my right eye,they said I would have to go and see a specialist eye doctor but it would take a few weeks.

During that time I carried on working with a banging headache,nothing seemed to touch it and I also had started with a very annoying noise in my ears which was worse at night,I went into work feeling even more drained of sleep,then one day I collapsed at work and came to in the Accident and Emergency Ward,the Doctor said I had to have a CT scan and as I had Papilledema he suspected a Brain Tumour,I think that was the worst moment of my life waiting for the results...they came back normal.
I then spent 10 days in hospital having a MRI scan,field test on my eyes and a Lumbur Puncture..now he`s the oddity it was only 15 so the doctors said I probably didn`t have IIH but I would have to see a Neuro and see what he said.
My Neuro said I had Intercranal Hypertension as it couldn`t be anything else,I had all the `classic` symptoms,whooshing in the ears,Papilledema and headaches he put me on Diamox 500mg a day.

I started with the Diamox in Oct 07 and had to stay off work,the side effects where just horrible,I felt like a Zombie,had terrible tingles and felt sick all the time,there was no way I could get to the local shops nevermind go to work,but having also just moved house in Nov07 ended up having to go back anyway as I was broke,lucky for me my work let me work indoors,in March08 I decided that the Diamox effects were wearing off and I went back on my post round,all was well until June when I woke up with a burning feeling in the right side of my back,the Dr was called and he said I had Kidney Stones and that the Diamox had probably caused them!
Once again after awhile I felt better until Aug08 and then started with bad headaches which was alarming as I was still on Diamox,I went upstairs as I was felling horrible to have a sleep and woke up a week later in Hospital I had a brain abscess,the Drs didn`t know wether having had Kidney Stones had something to do with it or I was just unlucky and caught a virus.I guess it was just one of them things.
Fast forward to a new year Jan13(yikes) once again I had a collapse at work,once again I`m in hospital thankfully this time only for 5 days,once again I have to have CT scans,MRI etc all normal,I`ve been ordered not to return to work and my Diamox has been upped to 1000mg,so once again I`m back to feeling like a Zombie,feeling alone as the family don`t understand this condition or anybody else as you look ok on the outside.


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Avatar universal
by Jadelaide, Oct 02, 2010
I feel for you & what you are going through.
I have just recently been diagnosed with IIH & Papilledema myself.
I have the other symptoms, but have not suffered these blackouts that you have encountered. That must be such a burdon for you to live with.
I am surprised that they have not considered removing some CSF to see if it relieves some of the pressure on the brain. ( Lumbar Puncture)
I was prescribed the Diamox too, but had a nasty allergic reaction within 15 minutes of taking the pill.
Looked up the medicine details on internet only to discover that it is a sulfa based drug! I'm allergic to Sulfa drugs & the hospital was aware of this because they asked me if I had any allergies to anything & I told them anything containing Sulfa, such as Bactrim etc. So here I am still suffering myself, & not being treated with any medications because the Professor at the hospital & the others there, do not know what med's to prescribe for me since most are sulfa based apparently, and they said they needed to do some research to find a possible suitable drug to treat the IIH.
I can't believe that they are so behind the times.

Have the specialists mentioned the steps that they intend to take next, to help you with the IIH & Papilledema?
From the research I've done over the internet, it seems that this can be a life threatening illness, if not correctly treated.
I have been concerned myself, because they have not called me to further discuss whats going to happen with my own situation.

I sincerely hope that they intend to do more for You, sooner rather than later.
My thought's are with you for a speedy recovery.
Take Care.

Avatar universal
by rubysgrandma886, Nov 13, 2010
Hi Guys,

just reading your post, sorry to hear that things are not going well.  I am to having a few problems at the moment i have had IIH for over 15 years, it came out of the blue or seem to but when i look back i had headaches and whooshing in my ears for a while but put it down to working to hard lol.   At the moment i have just had a LP shunt fitted and that failed and i have just had to go back in and have it tied off as my brian decided to produce so much fulid i put on 2 stone in 2 weeks and looked like a whale.  (not good) i can not have a VP shunt as there is not enough space so i am now back to the lovely Diamox (1,500 per day) also a the pain killers to try and help (not that they do as you can see it is 2am and i am in so much pain that i am looking for answers myself.  I have been looking for years now and it seems that for some people the shunt and drugs and work and for others they do not, i think the main thing which is really hard is to keep positive the best you.  

But i know only to well that with losing your eyesight, pain all over your body, the constant whooshing and the lose of feeling in hands/feet and the worst bit of all feeling like your head is about to explode and you wish you could take your eyes out and wash them and put them back and that is not to mention blacking out without no warning, the worst thing that i hate is loosing control of basic bodily functions (i will not explain any more than that) i can but up with the confusion and memort lose but that was the last straw for me it makes me more determind to keep cheerful and laugh at things if not i do not think i could cope( IT IS REALLY HARD BUT TRY).

The best thing that i have found  it that when you see your nuro surgen's make sure you ask him what he would do if he was in your shoes when he offering treatment, also ask all the questions you even if you think that they are silly it often opens doors for you to get more information.  I have found that taking a close family member with you helps so that they can explain things to the rest of the family and friends to helps also i think you need to involve as many people with care as possible this helps them understand the problems you are having in more detail.


I hope you feel you are not alone in this there are a few of us out there with this and are all in same boat it is nice to speak to someone who understands.

Take care x






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