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Possible iih, how to push for testing?

Posted , 3 users are following.

sambowambo
sambowambo

Hello guys,

I'm 25 in the UK, and have been having constant binocular double vision. Paired with this, I've had crippling headaches. For a month straight I had headaches every day, but recently I'm having headaches maybe 2-3 times a week. But the double vision is constant, apart from when I shut one eye then I can see straight.

I went to the opticians who said I had perfect vision but noticed blurred optical discs, so she sent me to emergency eye unit, there I had scans on my eyes and pupils dialiated, the specialist said I had slight swelling in my optical nerve on the right eye. He said it was nothing to worry about but obviously it is something to worry about because I quite literally can't see. And my gp said it's not normal for someone so young to have double vision.

I went for an mri yesterday and should be getting the results back within two weeks.

I have read alot on Google and suspect either lymes disease or iih. I heard lymes can cause iih. I've posted on the lymes section to get info if it could possibly be lymes (I have been tested negative, but alot of sources say the NHS are incompetent when it comes to lymes). And I am here to ask you guys if what I have could be iih, and how would I go about pushing my gp for tests? I will wait for my mri results to come back, just in case, but I would like to be prepared in gathering my resources before hand, as this ordeal is quite literally ruining my life.

I cannot go anywhere, cannot cross the road, cannot watch TV. It's a very stressful time, and the stress of thinking that some doctors are incompetent and not literate enough to recognise the more rare conditions, worries me, because I want nothing more than to fix whatever I might have and resume a somewhat normal lifestyle.

Most of my headaches originate in the back of my head, just above my neck, and then the pain goes straight over my head to the top and above my eyes. As I said I have the headaches around 2-3 times a week at the moment, and some of the times they are only apparent when waking and then dissipate after being up and awake after an hour. Then days like today, I have been feeling blah, laying down, and a headache has formed.

When laying down, I can also hear whooshing in my ears - not my heart beat, but a whoosh whoosh whoosh sound, which can sometimes be alleviated when changing position.

If you guys could help me it would be very much appreciated. Any general advice, or how to deal with my gp, anything at all. Thank you thank you thank you!!!!!

0 likes, 4 replies

4 Replies

  • hollygb66
    hollygb66 sambowambo

    Posted

    Waiting for your MRI results is the way to go.  It does sound like its IIH, but knowing why is another thing. Some doctors will just treat symptoms while others will look for the reason why it's high. 

    I could be wrong, so definitely just wait it out. 

  • sambowambo
    sambowambo

    Posted

    Hello guys!

    I've had my mri and it's come back as normal so far! Here is a copy and paste of my other reply on another thread with an iih follow up at the end -

    Thanks so much for your replies!

    Had the mri scan done, and rang the doctors today and the lady confirmed that nothing abnormal came up on the mri scan, which is great news! No tumour!

    However I am under the impression that specialists will check the mri? For example in my case, an eye specialist and a neuro specialist? As mri's can be misread? Or is that not a thing?

    I'm being booked in to see an eye specialist again - I recently moved so need a new specialist and it's definitely worth getting a fresh set of eyes to check me over!

    As for tinnitus, I do have a constant high pitched ringing in my ears when my surroundings are quiet, but I've had that for as long as I can remember. I will mention it to my specialist?

    I'm definitely suspecting iih, just a little hunch in my gut. I will mention it to the specialist and hopefully get a referral.

    Though I am grateful and happy I don't have a tumour, I still do not have a diagnosis! And I'm still seeing double, and having several bouts of headaches a week. And I'm ever anxious of them misreading and missing something on the mri, like a tiny bleed or something.

    Also, upon waking, for the first half an hour of my day I can *almost* see straight...its a very nice feeling. But as the day progresses, it just goes back to normal double vision. It's mostly things that are far away and moving, like TV or a chimney in the distance, birds, stars, my dog running in the garden, or people (who have two heads) in a supermarket, things like that. And sometimes things closer get doubled, if I'm having a bad vision day. But I'm in my room at the moment and there's a plug on the wall, and I can see only one, and the doorknob, only one, phone screen with letters only one. I will mention this all to my specialist. It's a brand new specialist so I'm just gonna go to town with my descriptions.

    I've also been keeping a symptom diary, one thing that has started to happen is, you know when youre about to faint and your eyes go all spotty and black round the edges? That happens to be quite a bit, if I move over in bed, rub my eyes, or stand up too quickly. Sometimes I feel like I could faint, but the majority of the time it's just the visual sensation! Weird?

    Is the new visual symptoms I've had, related to iih in any way? I will be sure to push for iih testing with the eye specialist when I see him, hopefully he can refer me to a neuro doc.

    Fingers crossed!

    • Sophiekinz123
      Sophiekinz123 sambowambo

      Posted

      Have u seen anyone recently.. I've been having problems with my eyes for about 3 months now. I only went to get my eyes tested and they said my optic discs were blurry so they sent me to the doctors, I had an MRI which was clear and since then my vision has gotten worse. I don't get headaches though, and I struggle to see distance! They have said about fluid on my brain and waiting to see specialist but they ain't being very quick about it. I'm scared I'll this vision loss is gonna be permanent! I'm only 23 years old with a 10 month old baby sad
  • sambowambo
    sambowambo

    Posted

    Hey sorry you're having eye problems. It's really frustrating, worrying, end of the world, when something goes wrong in your body and the fact it's the eyes which you rely on so much through day to day, it's even more horrible! I feel your pain, you aren't alone!

    As for the long distance things, it seems mine is/was the same, things in my room are fine, things like my phone or laptop close to my face is fine, yet I have 20/20 vision. And as soon as I step outside the vision goes funny, as there's so much moving and bustling, it seems my eyes can't get focused and turns everything blurry.

    Lately however, the past couple of weeks after around 2 months of constant double vision, it seems to be getting better. I had my mri, and it came back clear, as far as I'm aware. No tumour, no dodgy stuff in my brain. The only thing I've been doing differently is massaging my neck, which I think I mentioned I have undiagnosed problems with. I had a few lumps in it, like lymph nodes swollen and painful, all down the left side. I don't rub them though, I rub the muscles either side of the spine in my neck. I also have a sore part of the spine that connects the neck spine to the back, so at the Base of the neck, Ive had that forever.

    I also still get headaches occasionally, though not as frequent as before. This gone week I've had none, only a little pain, that soon went. It's all very strange indeed.

    I assume you've been to your gp? What did they say?

    As for me, I have an appointment on the 18th of this month with another eye specialist, I assume I'll have to go through all the tests again. In between then and now I'm going to make an appointment with my gp to discuss lymes disease and iih and myasthenia garvis. Could you do the same? As my research has pointed to those three diagnosis, do your symptoms add up to mine? I know you said no headache.

    I don't go out much because my eyes have totally messed up my confidence and whatnot, but last time I went out for dinner last Thursday, I sat in the restaurant and everyone was singular! No doubles! It was an amazing feeling. Several days before that I was able to look at the TV without my eyes going crazy into double. When I went out the restaurant, I was fine for a little while, but then things started to go a little funny again and I came home.

    18th specialist, and in between then, gp appointment. They have taken their sweet time booking me in to see a specialist, I was shocked to learn of the wait, and I always assumed that double vision was very serious, and waiting around is not advised...but I guess I was wrong hey.

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