Hi

My name is Claire and I am 25 years old. i have just been diagnosed with IIH after an agonising 4 years of being told my headaches and never ending pain was migraines. My DR's were constantly swapping my painkillers and none of them worked the pain just wouldn't stop I felt like somebody was trying to crush my head. Then 2 years ago I started having problems with my speech and my memory, I started geting confused a lot but still this was shrugged of by my GP! Then 3 weeks ago I went for my eyes testing and they saw my optic disc was swollen, I was straight to the eye clinic, straight in for a CT scan, admitted straight to hospital for my first LP where my opening pressure was already as high as 31! I'm still waiting on an MRI and as the pain in my head hasn't subsided all I can see is another LP coming on my next visit to the hospital. My family and friends don't understand and I just need people to talk to who don't think I'm making a little 'headache' sound worse than it is! i look forward to getting to know you all

Claire xx

Hello Claire, and

Sounds like you could use a big

You have come to the right place to be among those who DO understand all too well what you are going through. Because we have been there, done that, and know what it's like to be so misunderstood, know that we are here, on YOUR side, to help out any way that we can.

Are you taking any diuretics? I think most of us were prescribed Diamox (Acetazolamide) after having a lp to help keep the pressure down a bit longer, to delay a headache coming back. For some people, medication is all that is needed. For others, it is surgery. I opted for a lp shunt. It is working out well for me (meds were able to keep my pressure down but only for 3 months). Did they give you anything for your pain? Unless you have a doc who is experienced with IIH, they too don 't understand just how bad the pain can be and tend to presxcribe lightly.

There are many great handouts available on this site that you can give your family/friends to help explain IIH. I highly recommend that you take a look at them and then make copies. But, as you look around the site, you will see that what you are experiencing is so very common. Just know that you are no longer on this journey. We're here for you.

They have put me on Topamax? But my headaches haven't got any better since the LP at all. I have got my next nuerologist appointment on 28th June but didn't want to wait that long so am going to see my GP on 21st May. but like you say as they didn't even spot it I just don't see how they will help me.

They haven't given me anything additional for the pain I just still have co-codamol left over from my 'migraine' days. But you are so very right I am indeed in big need of a from people who understand that it isn't just a headache. the confusion, and memory loss that go with it not to mention falling over and the tinnitus!

I'm so glad I have found this website, for your kind words

xx

Hi Claire! I'm sorry to hear that you've suffered so long, but hopefully you're on the right track now. It's amazing how quickly things move once your vision is in danger. Most people find some relief after LP, so I hope you at least got a little break from the pain. Linda's right, if they haven't already started medication, that will probably be the next step..they just may be waiting for MRI to confirm diagnosis.

It can be difficult for people to understand IIH beause we don't necessarily look sick, but hopefully the more educated they become the easier it will be. Some members have included friends & family in doctors appointments. Others have used the guides & suggestions that Linda mentioned. You can find anything from talking to friends/family about IIH to benefits & resources.

Feel free to post or ask questions..we'll help you any way we can!
Take care,
Julie

hi there im also new to this site so i wont be able to help with your questions but im always here if you just want someone to have a moan too xxxx

I Just love how supportive everyone is. Right now I feel that everything is falling to pieces, I can't finish a day at work, I can't spend too long playing with my nephew and it is putting such a strain on my life. Knowing that everyone here knows what I'm talking about makes things so much easier as people think I'm exaggerating when I say how much it hurts and takes out of me.

Yeah I am still waiting for my MRI appointment to come through fingers crossed that will be soon. So far the LP hasn't seemed to relieve any of the symptoms and the Topamax they have put me on doesn't seem to be helping much either. I am more than prepared for another LP pretty soon and the way I am feeling would actuallly welcome it.

After speaking to Heidi as well I tried to book an appointment to see my DR to speak to him about pain relief because I just can't function and I have been told that I can't have an appointment until Monday next week and I don't what to do? I don't really want to wait that long as I'm worried now about the pressure obviously building up again. Should I visit the Emergency department or something??

I feel so very very lost, :-(

xx

Claire, did you get any relief at all after having a lp? Do you find that laying down makes your headache better? Is it better first thing in the morning?
Do not stress over your pressure building up. It only takes 82 minutes after having an lp for pressure to return because the body is constantly making fluid. It can always be brought down again, but I am puzzled if you did not notice any improvement after your last lp. I wonder if they drew off any fluid or just took the o.p.??
If the pain gets too intense, do go to the emergency dept. They can give you meds to make it better to give you short term relief, but sometimes just breaking the pain cycle helps.

Hope you are able to feel better soon!

Hello,

I find that something cold on my forehead and the back of my neck helps with some of the pain and to lay at a bit of an angle in a dark ish room. I also take paracetamol and codene which seems to help me the most. Or paracetamol and Ibuprofen together.

Hope that helps x

Thanks guys your words of wisdom have helped me a great deal. Yeah the LP did help or about 2 days then it started up again. The pain is easier if i lay down which is how I spend most of my day at the minute.

Saw my GP this morning and he has signed me of from work for 4 weeks telling me to take it easy as I was trying to do too much.
This site has been a god send already and everyone is so lovely.

One of the cutest things that is keeping me going right now is that every night before he goes to bed my 5 year old nephew rings me and asks how my poorly brain is, because that is how he sees it. I think if I hadn't found this forum all the questions in my head would alone drive me crazy. Thanks guys

xx

Claire, it is good news that you felt some relief after the lp. That will work in your favor. Now, it is a matter of working toward keeping the pressure down all of the time. I hope your docs will aggressively move toward that goal!

Know that we are here for you. Feel free to come in and rant and rave or laugh or cry. We've got your back.

Am in exactly the same boat as you at the moment my story is much the same as yours I am on Diamox and have been off work for approximately 4 weeks am having MRI scan next week and then have Nuro app
ointment the week after and hopefully should get some answers. It is nice to see someone who is local to myself

Hi Claire! Sorry I'm a few days late chiming in to say hi! Welcome, and I can see that you are already getting a lot of help and support from the great folks around here. I'm glad that you have finally gotten properly diagnosed after so many years of suffering, and I pray that you are able to get some relief for your pain soon. Please do as your doctor suggests and try to rest as much as you can until the next appointment. Getting exhausted and overwhelmed only makes all the symptoms worse for me!

I love what you said about your nephew's calls keeping you going -- I can totally relate! I have an 8-year-old daughter who has kept me fighting this illness for over 2 years now.

Sorry I have been absent for so long, the pain has been driving me insane!! Got my MRI on Sunday and so far haven't been able to return to work. So on top of everything now I'm worrying about bills and mortgage payments and all sorts, which as you know doesn't help with the pain. The pain is no longer relieved by laying down so I feel that my pressure is back up again so I am waiting to see what is said after the MRI at my next neuro appointment.

How is everyone else doing??
xxx

Claire I'm so sorry you're no better and I will keep my fingers crossed that this changes for you soon. I know what a strain and how stressful finances are when you're in this position, so here are some links that I hope will be helpful.

Turn2Us

Turn2us are a charitable service which helps people access the money available to them – through welfare benefits, grants and other help.

Access to Work

Access to Work can help you if your health or disability affects the way you do your job. It gives you and your employer advice and support with extra costs which may arise because of your needs.

Equality Act 2010

The Equality Act 2010 is the law which bans unfair treatment and helps achieve equal opportunities in the workplace and in wider society.

Information You Need to Give an Employer and Others When you Have IIH.

Often it is difficult to have an Employer, Insurance Company etc understand what IIH is. The best way to is to give them adequate and reputable information about this disease the best way that you can for their future records or your personal files.

I hope you don't have to wait too long for your appointment or answers..hang in there!

Hi Claire,


So sorry your in pain and having to wait. Have you had an appt yet? Welcome to the group! This place is filled with amazing people who REALLY DO UNDERSTAND! I know that this is the one place I can come with the world looks at me like I am nuts! I hope you find as much love and support here as I have!

Blessings,

Jessica

wish i could help xx