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 Paula diagnosed in September 2011

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tirisaf
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PostSubject: Paula diagnosed in September 2011    Sat Apr 14, 2012 12:47 am

Very Happy Hi, my name is Paula and I was diagnosed in September 2011 after having symptoms from the January and being told by GP that is was labrynthitis (inflammation of the inner ear)!!! After a routine eye test my optician diagnosed esopohoria and even though I had very good eye sight he prescribed glasses with prisms to correct the turn (not visible). These were HORRENDOUS and it was like living life on a bouncy castle! I returned to the optician and queried his diagnosis and it was then that I was referred to an opthamologist. Even though it cost me £200 for glasses I cannot wear it lead to a diagnosis for me when he discovered papilloedema and referred me for an MRI and an appointment with a neurologist.

To date I have had 3 LP’s with opening pressures of 31.5, 26 and the latest 34. After the first two I had the awful low pressure headaches for about 4-5 days but then felt some relief. However, after the last LP I had no headache despite it being the worst LP. I’ve had no relief and have headaches, pulsatile tinnitus, nausea, dizziness, stiff and aching neck, blurred vision, some eye pain, fatigue and poor cognitive ability. The doctor who performed the LP said that I may have to have more regular LP’s and would be referred back to the opthamologist as she thought the optic nerves were slightly swollen – I am still waiting for appointments and will speak to the neuro’s secretary on Monday.

I take Diamox 250mg (2 twice a day) and have lost over 3st. However, after the rise in pressure after the last LP I have gone ‘off’ the diet and feel really negative which is not like me – but then I DON’T feel like me anymore!!! Sorry to go on and on guys but I’m feeling really fed up and I know you understand. If anyone has any advice I would be very grateful as I have been on long term sick from work (I teach teenagers with behavioural and learning difficulties) and they won’t let me back until the GP says I am fit and she won’t as she says theoretically I am worse than when I went off with a rise in pressure – arrrrggghhh!
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Heidi
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PostSubject: Re: Paula diagnosed in September 2011    Sat Apr 14, 2012 1:23 am

Hi Paula hug welcome to the group and there is no need to apologise for telling us how you feel. I am not surprised that you have had this bumpy ride with diagnosis because it seems that this is still a typical thing.

Hopefully your Doctors are going to have a specific and effective treatment plan for you, rather than tell you you will need regular LP's which should never be an option because of the risk of scarring in the lumbar spine. Your Neurologist should be doing more, and also he should be arranging for you to have an appointment with them for as soon as possible if he has noticed swelling. I'm not at all surprised that you're fed up I would be too, because what on earth has happened to their duty of care, and getting on top of all your symptoms.

When you ring on Monday I would mention to the secretary that you cann't go back to work until you are fit, and at the moment you are being told you aren't but would like to return as soon as you can. Make sure you insist on seeing him and make the point you are not happy with your treatment. You have patient rights and the right to enforce them especially in this case.

The position you are in now, I have been in myself and I worked for the NHS at the time, but I wasn't satisfied with my treatment or what I had been told so I insisted my Consultant see me. When he wouldn't I went to PALS which is the Patient Administration Liaison Service and told them. They then got me an appointment to see him within 24 hours, at which he did have to apologise.

I know and understand that this has made you feel very low and disheartened. You have been made to feel that way on top of being ill, and no doubt their attitude has made you feel as if you are in the way and being a nuisance. Rest assured you aren't and you have a voice, and a right to expect them to get your IIH under control.

Please don't give up hope or give in. Phone the PALS office in your hospital and speak to them if you dont get any joy on Monday. Here's the link to PALS so you can find the one you need, and here is the link to NHS Wales which will tell you your rights and how to complain if you ever need to.

Let us know how you get on, and wewill help you all we can. We're here to support you.

Heidi hug
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tirisaf
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PostSubject: Re: Paula diagnosed in September 2011    Sat Apr 14, 2012 1:50 am

Thank you Heidi, that is useful advice. I'll let you know how i get on.

Paula
thank you
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Wylee
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PostSubject: Re: Paula diagnosed in September 2011    Sun Apr 15, 2012 5:10 am

Hello Paula, and welcome to the forum.

It is interesting that you were first diagnosed as Labyrinthitis. Did you have a viral infection prior to your symptoms starting? I ask because I DID! I had gotten sick from the zoster virus and was left with classic Laby symptoms. It took a few years, but once the docs figured that the spinal fluid pressure might be the culprit they diagnosed me with Pseudotumor Cerebri. I had a lp shunt installed this past November first which has helped a bunch!

Hope you are able to get some quicker positive responses from your docs.
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PostSubject: q   Sun Apr 15, 2012 6:03 pm

Hi Wylee

Thank you for the welcome . As far as i can remember (my memory is shocking at the moment) i didn't have a virus. I was driving down the motorway to a different campus and the traffic was stop/start all the way. I felt really disorientated and ended up vomiting (sorry if that is too much info!). I can only describe the feeling as like being travel sick. I had a week off work as the symptoms didn't ease and put it down to a bug. The following week i returned to work but still felt unwell and had difficulty reading the computer screen and interactive whiteboard - i even asked my teaching assistant to check just in case it was them not me!!! I tried to continue with the mornings teaching but every time i bent over to help a student the room was spinning. I went to my GP and he diagnosed labrynthitis from these symptoms. He prescribed various tablets over the next couple of months and it was only when i broke down in tears and begged him to help me did he even think of further referral. It took my optican to refer me the opthamologist and the rest as they say is history!

I am glad you are finding the shunt beneficial and you are feeling much better. It is nice to hear a positive story - there are so many negative ones about shunts - they fill me with fear!

I hope your health continues to improve and thank you once again for your interest in my story. It is good to know i am not alone.
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PostSubject: Re: Paula diagnosed in September 2011    Sun Apr 15, 2012 6:24 pm

Hi Paula! I'm sorry to here you've had such a struggle. I think finding diagnosis & initial treatment is one of the most difficult aspects of IIH, so hang in there!

I also wanted to mention that most people on the site are also struggling & looking for answers. Unfortunately, people don't tend to reach out if they've had a successful experience. Just keep that in mind when you're reading through the posts..there are people functioning very well with IIH we just don't tend to hear from them.

We're definitely here to support you, so keep us posted.
Take care,
Julie
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