Sarah - diagnosed 2010

Member

Hi,

I luckily stumbled by this group on one of my many searches in finding out what this is all about!!!

My story so far:-
Last year me and my family looked after my mum who was diagnosed terminally ill. It was one of my worst but best years of my life. You wonder why the best!!?...... because i was honoured to be able to spend those days with my mum and REALLY get to know her. The worst?!?..... because it is horrible to see your nearest and dearest suffer and to be strong while you know you are going to lose them.

So naturally after her passing in November my headaches and dizzy feelings got pushed aside (by myself) as stress. But at some point - maybe feb or march something was happening to my vision! I could not put my finger on what excactly but something wasn't right, a little 'surreal' During a routine yearly eye examine in May i even demanded that they check again. No change!!

I started to see lights but couldnt figure out the pattern of when and where and the 'surreal' feel persisted. I ddn't go back to the opticians until, i managed to explain the blue arc that i began to see regulary. When i knew that i didnt sound so mad -and in my eyes was solid proof lol.

So July 10th the opticain found that my left papilloedema was very swollen and i went to eye casulty. I left hospital on july 15th after CT scan, mri, ecg, chest xray, blood tests & lumbar puncture etc. I felt reasonably well and felt like a fraud being in hospital and certainly had no idea at first why they were so concerned. I didn't even relise that my vision was double.... go figure. it must of happened gradually.

Along the way i have just thought myself lucky that its my wake up call to stop smoking and lose weight and although extremely worried about my eyesight i know that my headaches aren't as bad as other peoples. I've managed to stop smoking and put on weight lol. i start medication next week. and i cant wait...
my headaches have increased in frequency throughout the day (all though still thank the stars, not much by intensity) my light headed spell can last ALL day and these are what create the most problems. Sometimes i can't think so straight and my memory gets worse. The next day i may be fine. My double vision is worse on some days than other and my right ear can get quite noisy. Which from my understanding is quite normal.

I have been getting some weird sensations through my body though which really doesnt make sense - although still none of it really makes sense to me anyway. Mainly on my left side but certainly not confined to the left. Cutting it short, it may start out as a shotting pain, or a dull ache, not uncomfortable but kinda has a tickly feeling inside that makes you want to shake it out, sometimes like i have slept (for a very short while) on my arm. I am aware i maybe looking out for things and my sensitivety maybe heightened so kinda not sure whether im being neurotic now lol after ignoring the symptoms for so long. I willl have to wait and see - but has this happened to anyone else?

Further eye tests tomorrow - fingers crossed.

I think i have waffled on a bit, but thanks for listening. This maybe because i look well and normal and im sure most people think - ntheres nothing wrong with you!!!! I really look forward to hearing other people stories.

Incidently, i am 35, not on the pill but am overweight, of which 1 and half stone i put on since christmas.

Nice to meet you all.

Sarahx

Admin1

Hi Sarah

and

for sharing your story with us. You really have been through the mill haven't you. Your symptoms all seem typical of IIH. Heightened sensitivity to light and sound is common in our cases, and also having problems with short term memory.
I know what you mean about the headaches, do you also get a whooshing noise in your ears?

I know in my case I too got the tingly sensations in my left side, and sometimes it would feel like my left arm didn't even belong to me. I forget things easily and if I'm distracted I forget completely what I was saying or doing, and I also mix up words. So this being said I don't think you are being neurotic at all, I think it's excellent that you are aware of the things that are happening to you, and the next step would be to keep a detailed record of it all in a diary, so that when you see your Neurologist, you can explain it to him in more detail, and show him how long it has been going on, and what days were the worst.

I hope your eye tests go well tomorrow and look forward to hearing how you got on. People will look at you and think you don't look ill, especially when you have something neurologically wrong with you, because they can't see it, and it makes it worse when they have never heard of your illness. So my advice is, print off as much information as you can on IIH, and give it to your friends and family, or email them links to places where they can get that information, we have some helpful links in our Informational Links section.
Once they have it in black and white, and have all the information regarding symptoms etc., then they will gain a better understanding, and should be more supportive and thoughtful.

Don't apologise for waffling, your story is just as important as any other members, and there is not rule to how long it has to be. This group is here for you when you want to sound off when you're angry, upset and frustrated, as well as for information and advice on how to cope. SO feel free to make use of all the things we have here, and to make suggestions and things.

My fingers are crossed for you tomorrow.

Heidi X

Member

Hi Sarah

Hope the tests went well today

take care

Geri

Sarah - diagnosed 2010

Sarah - diagnosed 2010

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