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 Lisa - Diagnosed 2013

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lisap

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PostSubject: Lisa - Diagnosed 2013   Tue Mar 04, 2014 1:36 pm

Hello my name is Lisa. I am new to the forum, new to the IIH world. I hope to get advice and maybe a little bit of support, from all of you lovely folks who understand exactly what this feels like. My story started August last year when I was diagnosed with a csf leak. I had had fluid dripping from my nose for sometime and had started getting a lot of headaches. Eventually went to my Gp who told me it was "old mans drip" ! never heard of this, he eventually /reluctantly looked up my nose and declared I had a large polyp and would refer me.Skip forward and ent consultant said no polyp, I myself had researched causes and asked could it be csf leak which he almost fell off his chair laughing but said I should do a sample of fluid to put my mind at rest, 6 weeks later My consultant phoned asking to see me urgently this was October 2013. they all told me the leak was traumatic following being punched in the head by a patient I am a A&E sister and assaults happen frequently.In nov admitted with severe headache Dr thought I had meningitis first LP attempt inexperienced DR 6 attempts unsuccessful admitted on antibiotics Neurologist told me nothing wrong successful LP opening pressure 42 with leak present no-one felt this abnormal at no point did anyone look in my eyes even though I kept telling them I could not see properly.I had my csf repair end of jan at no point was iih mentioned the following day I felt surprisingly well and was allowed home.The next day the pain started I just put it down to post op pain but it just got worse I couldn't move by Friday I was begging my family to put pillow over my head GP contacted who eventually phoned and said nothing he could do as he knew nothing about my condition and hung up so off to A&E again ct scan normal, again ?meningitis.Never felt pain like this ever, medical consultant wanted to discharge me not medical problem suggested I contact ent consultant who did surgery myself Monday   and he was sure I could manage with paracetamol over the weekend I lay there frightened feeling no one would help me my 17 year old son spoke to nurses who got Dr from another team to step in eventually . I developed another leak which was like a huge gush then constant stream from my nose but the relief was amazing. I had phone call 3 weeks ago telling me I have IIH further LP following 2nd leak pressure 36 on diamox 500 twice a day and will need vp shunt .I am in so much pain everyday pain relief does not work it keeps me awake it is so bad eyesight bad I am miserable my poor family do not know how to help so I now tell them  It is not so bad that today is a good day my life has come to a stand still I cant work I haven't for months I have to protect myself from infection due to hole in my dura so have become prisoner in my own home I hate who I have become sorry this post is a bit long and sounds a bit like a pity fest really don,t mean it too sorry .
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Heidi
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PostSubject: Re: Lisa - Diagnosed 2013   Tue Mar 04, 2014 9:54 pm

A very warm welcome to our support forums hug, what a journey you've been on and how frightening it must all have been. It never ceases to surprise me that diagnosis has taken so long and that you have to be very ill before you get one. I'm sure the worry and stress it has caused you and your family was immense, and being an A&E Sister, I'm sure you'd have been expected to be more accepting.

I'm so pleased you are now on the right treatment and that it's being dealt with at last, but having to remain housebound because of the hole in your Dura must be so hard. Are they planning on sorting this with the shunt? As this occurred at work will there be recompense for this injury? I think it's something you should look into, especially if it is going to affect your career and your life.

To help with the pain try a cold cloth on your forehead, eyes and the nape of your neck, it does help to soothe it. I would also ask for your pain relief to be changed, especially with you being in so much pain, and paracetamol is really a mild pain medication, you need something more effective until they insert the shunt. I am astounded that they haven't given you something more effective, so that toy can at least function.

No apology is needed for needed for your post, this is why we are here. This is where you can come and share your story warts and all, have a rant when you need to, as well as ask advice and connect to others. We are here for you and to make sure that we do all we can to help you, and make life a little better.

I am very glad you joined us and I do hope that this will all be behind you soon and you are on your way to a successful recovery. If you need anything we are here to help.
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lisap

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PostSubject: Re: Lisa - Diagnosed 2013   Tue Mar 04, 2014 10:22 pm

Heidi   Thankyou for your response I will go back to my Gp tomorrow and ask for something stronger to help manage the pain my last visit I was told nothing would help until I have surgery so was given nothing,I try to be stoic and hide how I am feeling but I find myself in the bathroom alot in tears. As for work no one will commit to cause of the csf leak they say it is more likely to be due to the IIH than assault but it was only following the assault that I began getting any symptoms.I will have the repair done the same time as the shunt.I am shocked at how little the medical profession seem to know about this illness but in 30 years I have never nursed anyone with this diagnosis so knew very little myself. Again thank you for the support for the first time in months I feel understood that someone gets what this feels like that I am not moaning about a little headache you really have helped and made a difference hopefully tomorrow will be a good day.
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PostSubject: Re: Lisa - Diagnosed 2013   Thu Mar 06, 2014 4:13 pm

Lisa, you're definitely in the right place! Diagnosis and treatment can be very difficult, and we all understand. I agree with Heidi, and am glad they finally have you on the right track. I hope they're able to schedule something soon and you find some much needed relief!

Take care,
 hug 
Julie
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lisap

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PostSubject: Re: Lisa - Diagnosed 2013   Fri Mar 07, 2014 8:48 am

I was wondering if anyone knows if poor memory and not being able to find certain words is normal part of iih ? I went to the optician yesterday, optic discs are not to bad but my left eye apparently has very little vision left in it, will this come back my optician didn't know much about the condition and was quite rude when I asked. Thank you Julie for your kind response.I have so many questions, some silly I suppose, but do they always shave your head for vp shunt( good excuse for hair cut) sounds vain I Know. My ent DR phoned me to let me know I had IIH  she told me i needed a shunt before they can re-repair my csf leak she said a small incision around hair line was all it needed I have always done medical nursing so unsure. but all the research I have done it seems that an area of hair is shaved I don't have a problem with this they can shave my whole head if it gets rid of this awful pain, new pain relief does not touch it.I just want to get my family up to date especially my wonderful son whilst he is 17 for many years it was just us we were on our own for 12 years and he is so protective and not particularly coping with me being unwell I do hide alot from him as don't want him to know how awful I feel most of the time.when the time is right I will let him know exactly whats happening but I have no dates or appointment times yet just that one phonecall from ENT consultant.
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PostSubject: Re: Lisa - Diagnosed 2013   Fri Mar 07, 2014 2:14 pm

It's my understanding they can usually get away with just shaving a small spot and try to hide it under other layers of hair if possible.

The vision loss can vary. I had huge holes in my vision and couldn't drive, but it all resolved once I got the shunt. I do have issues with memory, recall, and sometimes my words come out all wrong..I think that also varies. Mine seems to get worse with pain, but I had a small stroke at one point so always there.

As far as questions and information regarding IIH..even some "specialists" are uneducated and won't be able to answer your questions, so never feel the need to apologize for asking. No questions are too silly or stupid for us! I recommend you look through the Useful Guides and Print Outs section. IHRF is also a good resource, and I know other members have contacted them for complicated questions or support. You can find them at http://ihrfoundation.org/.

This disease is definitely hard on family and friends..there are print outs and sections devoted to them, so look through and see if any of it would be helpful for your son. A lot of these sites are visited by people looking for answers or assistance because they're still suffering so I'm not sure I'd give him full access, but you should at least find some educational pieces or members he could connect with. I hope it helps!

 hug 
Julie
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PostSubject: Re: Lisa - Diagnosed 2013   Fri Mar 07, 2014 5:14 pm

Actually yes the IIH does cause cognitive problems, my family have got used to me using either the wrong word or transposing words when speaking, I even do it when I'm typing too. Memory problems also go hand in hand I'm afraid. We have some useful leaflets from our partners the Brain and Spine Foundation that might be of help to you.

Memory Problems and Tips how to cope with them
Fatigue and Neurological Problems

We have some new information booklets which we are publishing very soon and will be going into Neurology departments throughout the UK, but if you would like them now I can send them to you via email.
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Seraphina
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PostSubject: Re: Lisa - Diagnosed 2013   Sun Mar 09, 2014 11:41 pm

Hi Lisa,
I know exactly how you feel and what you are going through. I have been suffering with this for 15 years and still have not been formally diagnosed with IIH, though I know this is what I have. Tomorrow (10th March) I am going back again to my doctor to insist on specialist consultations, which here in the UK can take weeks or months to happen.
I am crying for me and you, reading about how you feel a prisoner in your own home and have no chance of going back to work as you are.
IIH seems to have so many things that make it difficult to diagnose as we all seem to show different symptoms. I have the excruciating headaches, but also bad tinnitus, ear ache and pain behind the eyes and so many foods and outside triggers that make it worse.
Let's hope some day soon, someone will come up with the cure.
Love from Seraphina
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PostSubject: Re: Lisa - Diagnosed 2013   Thu Mar 13, 2014 5:18 pm

Hi Seraphina,
Thank you so much for your kind response, it makes you realise you are not alone on this horrendous journey. That their are others who know just how you feel. I can't believe that you have been fighting for 15 years to get diagnosed, how awful for you. I too have now developed tinnitus which is present all of the time, which keeps me awake. The only way I can describe it, is like I have been at a very loud concert, which leaves a ringing in your ears. This with my balance problems, headaches, painful eyes and multiple other problems makes life so hard. Close friends have started to withdraw from me as they can't cope seeing me like this. My only saving grace is my wonderful partner, Steve and I have the most wonderful, amazing seventeen year old who is always their with a hug and some little tale to make me smile. So I know I am one of the lucky ones. I hope your latest doctor's visit gave you some of the answers that you so obviously deserve. The waiting for a consultant's appointment is almost harder than the illness itself.
Take care, I am always a shoulder to listen.
Lisa. x
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