HI,
My name is Emma. I have recently found out have IIH. SO now I am freaking out I had a lumbar puncher on Tuesday opening pressure at 37 but let me go back to beginning and explain why I am so freaked out. I went to my local specsavers in March for my eye test knowing that I would need glasses has my eyes ain't what they use be. HAD the test and glasses where prescribed then I was sent for a field vision test this is where things started to go wrong. I closed my right eye and waited and waited then the women said"I have turned it on Emma and your not pressing anything let's try again" and same thing happened. I was sent back in to the guy who did the original test he told me that he would refer me to my local eye hospital where they would run more tests. HE then told me that they had always know that my optic nerve at the back of my left eye was never attached proply from being a child ( why did no one ever tell me). Anyway I then gets a letter in post with my appointment and at the same time I visited my gp with other symptoms he referred me to neuro and at that moment they was thinking Ms. I went to my eye exam and passed the field vision test with flying colours I was thinking yes yes I am OK then the doctor but that stuff in my eye that makes my pupil bigger he looked at my right eye then my left suddenly shot back from his chair and said I am sending you for an emergency MRI scan I was so scared not because I was thinking about what's wrong with me but I hate MRI scanner s I hate small spaces I still struggle getting in lifts but then I read somewhere that a lumbar puncher is used if a patient finds MRI scans hard and I thought to myself the MRI sounds alot better so I had it done thinking it would give the results that was needed and no lumbar puncher has at this point I was still thinking MS. I got a letter a few weeks later saying that the scan was clear but I had been referred to neuro by the doctor. That same week I was making a engagement cake for someones daughter and my phone went off it was a doctor in Salford he wanted me go for LP straight away just out of shock I told him I coulndt go but I would go day after. So the following morning me and my mum went up at the hospital and had my first attempt at the LP the women tried 11 times I was in horribly pain she gave me 15m of local anesthetic and I was still in pain my spine is so deep in my back she couldn't get it the doctor but me on tablets and let me go home after I had a CT scan and blood tests. I went home is pain still wondering what on earth they thought it was wrong cause I felt fine and my mum came home with a really sore hand has I almost broke it while holding it when having the LP. Then came the harder bit going back on the Monday to try again. AFTER 6 attempts they still couldn't get it my doctor came and asked if he could try and I told him no I had had enough it hurt way to much. BUT it did need doing and I needed to find out what was going on has I was going away soon and I didn't want to be ill on holiday. SO the doctor told me he had been looking for tumors and other things my CT scan showed everything was OK no tumors but a pressure build up. HE let me go home to have a think about what to do I phoned him the next day and told him I would try another LP but if it was unsuccessful then I wanted it doing under X-ray. This time I had a new doctor try and I really let him try he was almost there and it nipped a nerve and I screamed. IT turns out I have hyposenstive skin and no matter how much local a they give me I was always going to feel the pain. The doctor was unwilling to try anymore he believed it so unfar and that I should be put to sleep when having it done. But I was put on a waiting list for x-ray guide and let home. This is when a lovely nurse came and sat with me and told me what the doctors thought it was. I was really shocked
Things started to make alot of sense. I had started having problems with my eyes in june 2011 but thought nothing of it just thought I needed nee glasses I have the ringing in my ear and other symptons but I dont get the headaches, well I do get headaches but not the ones I have read about from others I have suffered with migerines from being 8 so I thought maybe they have it wrong. They let me go I did my research. And tgen i went on holiday. I had been bk three days and got a phone call from my consultant who said that he wanted me to try another LP and that he would call the dat after as to when i should go. At the sas me time i rang to see how long xray guided list was it was a month i couldnt believe it. The doctor didnt call next day i was like yes. Then sunday i was watching x factor on catch up i recieved a phone call from salford they wanted to admit me into hospital. I went up next morning bags backed and everything not got a clue what i was going in for. Then i was told i was infor lp under sedative i was freaking out. Next day i went up at 4 into treatre didnt come out till 7:20 over three hrs it took to do a 30-45 min lp. My back is a mess thankfully didnt get anyside affects from lp. I was told next morning i had IIH that i should be careful of sun and vit a that i had to have reg blood tests and eye exam and visit consulant. The doctor told me i had to really do my know research cause he know little about this illness. So now here i am going on and on. Sorry:( just need to get it off my chest. I have a few quest III n's I was hoping u could help me with looking back now I think I have had IIH for sometime at least from being 10 why did no one else pick you p on it? Why are. Why don't I get the bad headaches why is it just my eyes that get the worse of it? Do I have to have my eyes tested every 14days has that is what I have read? Do u find ways to cope?

Sorry again for going on I am 24 in a few weeks I thought I had my whole life ahead husband kids and stuff like that but these tablets u can't get pregnant on and if I came off them while pregnant what would happen? Just having a melt down: (

im going to make u a youtube video hunny as i have so much to say xxx welcome to where you will hopefully find friends and ways to deal with things xx

Hello Emma, and

You certainly have been through it, haven't you!! So many failed attempts at having a lp! Here in the States, doing a lp under guidance is the norm and makes so much sense, to avoid exactly what you are going through. At least now you have had one and it has confirmed the IIH. You shouldn't need another, unless they do it as a way to relieve pressure. The meds should help to keep the pressure down.

There are many who have been able to have a successful preganancy, even with IIH. In fact, IIH often rears it's ugly head during pregnancy. Hopefully, sooner rather than later, your docs will be able to get your iih under control and you can resume a "normal" life. Hang in there!!

have a watch please xx sorry about the ending as youtube crashed

Hi Emma! First of all ... *big hugs* ... welcome to the group! I'm glad you found us and I hope that we can be a good source of info and support for you.

I know it is all so overwhelming and scary when you are first diagnosed ... I remember having a lot of the same fears and feelings you talk about. But I can tell you, based on my experience since being diagnosed in November 2009, it really IS possible to live a good quality life with this condition. You don't have to give up on your dreams! Yes, your life may change some as get used to managing your IIH, but it can be managed. Some of us even go into remission and the symptoms completely go away -- so we all have that hope.

Hang in there, sweetie! Learn as much as you can here on our site - the "Resources for You" section is a great place to start. And feel free to vent to us and to ask questions .. we'll always do our best to help.

Thank you vdubs. I watched your video and picked up some tips which I have wrote down.

You mentioned in the video that u had an lp done after u had a shunt in to check the pressure do they normal do that? Reason I am asking is because I am now mental scared after having so many attempts at an lp that I believe that if my meds don't work and IIH reared it's ugly head again I would have a shunt so that I would never have to have an lp again.

I know I am a whimp but I tell u I don't think they would be able do it without knocking me out again and they are only willing sedate u so many times.

Emma

my shunt was set at 1.5 and i still had problems. they tested for infection and checked via xrays and scans that it was in right. but nothing was wrong so i pushed for an x ray lp then when i got one it was 29 and i basiclly said see i told you it was high. so they changed the settings to 1.

I need to tell them to give me another lp as i know my poor shunt-a-ma-bob just cant keep up with me.

i wish i could have been there to hold your hand and looked out for you.

they should never try more than 4 times in one day but there is no set rules xx

big hugs and are you on facebook ?? if so find me lucinda vdubs sara

Emma I'm so sorry but some of us here have had hundreds of LPs. I've just had 2 so far. figure out what works, find a doc who knows your spine, and make the best of it, if it comes to that. doing it under fluoroscopy with a neuroradiologist would be your best bet.

Hi Emma! I know my welcome is late, but the sentiment is the same. I'm so sorry you've had such a struggle and I can't believe how much they've tortured you w/ these LP attempts. I'm glad they at least put you under for the last attempt..what a nightmare! Never apologize for sharing your story or reaching out for support.. that's why we're here.

It is definitely possible that you've been struggling w/ IIH all this time, but they just don't know enough about it. I think it's rare and isn't lethal, so there's not a lot of funding for research. There's also a stereotype attached that it only affects overweight women in their 40's, so a lot of practitioners think it's easily controlled. The Intracranial Hypertension Research Foundation in the US & Brain and Spine Foundation in UK have made a lot of progress, but still a long way to go.

I would suggest that you start by keeping a symptom log. There are examples in the Useful Guides and Printouts section. Some members have found certain foods and activities that trigger IIH symptoms, so may help you identify things that bring on symptoms. You will eventually learn your limits and how to adapt. IIH really affects everyone differently and everyone responds differently to meds/treatments, so you just have to be patient and persistent. Look through the posts, guides, and feel free to ask any questions. If you're not comfortable posting, you can also PM any of the Moderators or Admin. Hopefully, you're on the right track and will find relief soon!!!

Take care,
Julie

Thank you Julie and all of your replies.

Feeling alot better now after joining the IhaveIIH website there is loads of helpful information.

I have started keeping a dairy has many have suggested. I think I have a dairy intolerance so I am going to cut it out and try soya has I know I already like it and see how I go.

After having my first lp I feel better, still go dizzy at times and I keep forgetting things and saying things back to front, but it just makes me laugh. My dad always says never take yourself to serious learn to laugh at yourself, and it works.

I always just explain to people that my coversion skills aint great and why and people are reallying understanding.

Just hope and prayer I dont have to have another lp for a while and that my next eye test which is next week goes ok.

emma

Glad you're staying positive!! Please let us know how things go w/ your eye exam..

Thanks medmisfit. Appointment is tomorrow hope it goes well and pap is not there. I feel OK and eyes seem OK so very hopeful. Will let u know ASAP.

Hope he has good news

so here is the news.
Paps is back. the pressure most be up again and pressing on the optic nerve. however the opthamologist i meet today was not the first opthamologist whom I meet in may and referred me to get everything checked. although the doc was lovely he spoke very broken english. he told me that there was a small change in my field vision which is what i expected has my left eye didnt recover proper last time.
he looked at the back of my eyes and said that there was abit of pressure in my left eye, which he went on to say was caused by high blood pressure :?: i was like what no its not my blood pressure is perfectly fine its caused by IIH I even mentioned the older names for it to see if it rang a bell it didnt he didnt have a clue what I was talking bout.
why had my neuro not spoke to him or wrote to him about IIH. so this doc said i will see u in three months and see how u are then. thankfully I watched him sign the letter and he circled that i should see and different doc next time cause i think even he realised he hadnt got a clue. he said he was confused has pressure on the nerve like this is like i am an old lady (thanks) he hadnt seen it before.

now i dodnt know what to do i now know the pressure is back up, but i feel fine no headaches no blur vision no nothing i feel completely fine.
but i dont wont to leave it and lose my vision. so this is the conclusion i have come too, i have an appointment with my neuro in next few weeks i will leave it till that appointment tell him the results if he wants lp fine. but if i do start to feel ill i will ring neuro start away and go up a+e and get lp done straight away.

why dont doctors talk to each other seriously? my neuro is very nice and understanding man but why didnt he make sure i meet with an opthamologist who know abit bout IIH and what to look out for?

Emma, if it is indeed an optician and not an opthalmologist that you are seeing, that may be the problem. Opticians know only the very, very basics regarding eye disease. It is the Ophthalmologists, and better yet, the Neuro-Ophthalmologists who have the training in such things as optic nerve issues.

I would highly recommend that you get copies of your medical files and keep them with you. Then, when you have to see a new doc, you can show them what the others docs have done. It will save time and hopefully make the new doc feel less incompetent, even if they are :roll:

sorry it was an opthalmologist i saw i didnt know how to spell it sorry.

i will defo try and get some copies made. i see my gp on monday i will ask him to print me some copies off and then when i see the neuro doc i will ask him to make sure i see a doc who knows what to look for when doing my eye test and then how to proceed if pressure is high. Cause even I don't know what to do. Do I call him or just wait till next appointment.