Hi. My name is Tanya and I'm 44 years old. I have been a migraine sufferer since the age of twelve, and unfortunately feel that this has led to a delay in diagnosis.

Just over 3 years ago I was admitted to hospital with a suspected stroke. It started one Saturday evening (my husband travels regularly with work and happened to be away at the time) and I was getting ready to host a get together for my friends birthday. She arrived to help me get ready and found that I was slurring my words (I hadn't had any alcohol). Within 10 minutes she was finding it increasingly difficult to understand me and my leg started to give way. My two kids were upstairs blissfully unaware of any of this. My friend called for an ambulance and stayed to look after my kids whilst I was carted off to hospital. I had various scans, blood tests etc and 4 days later was discharged (still slurring and unable to walK without a stick) after being told it was a migraine.

Whilst in hospital I developed a heavy feeling at the back of my head. This feeling would last for a few days then go away for a while only to reappear.

About 6 months later I was diagnosed with a vitamin B12 deficiency. I was given an injection, had another a month later and then 3 monthly thereafter. I noticed that when I'd first had the injection the heaviness would go away, but would be back within a couple of weeks. I was referred to a haematologist who out me onto monthly injections which really seemed to help. About 6 months ago my gp decided to reduce my injections to every 6 weeks.

During the last 6 months I have been to my dr on many occasions complaint of a heavy head which feels like I have a bowling ball in there. I have always been told its migraine, even though its nothing like my normal migraines.

About 4 weeks ago I went again to the dr and saw someone different yet again. I complained of a heavy head, a sore neck, a sound like water when I moved my head and disturbed vision. She told me it was my age, of course my head felt heavy as a human head weighs 10lb, and that I couldn't have fluid there or I wouldn't be sat there!

I went back 2 weeks later and saw yet another dr with the same symptoms but the eye problems had got worse. This time when I woke in a morning I was totally blind in my right eye for a few seconds. She told me it was a migraine and prescribed some stronger tablets.

I had to arrange dory daughter to have her eyes tested as she has struggling to read so though I'd book myself one at the same time. When I booked the appointment I was told I wasn't actually due for one until February 2014 but when I explained I was having visual disturbances they booked me in. My eye test went well and in fact my vision had improved so much that I no longer needed glasses, but could do with reading glasses instead. Then she looked into my eyes and her whole body language changed. She asked whether I had had a photo taken of the back of my eye before and then checked back on the system. Apparently my optic nerve margins were blurred (meant nothing to me). She compared them with photos taken in February and in 2010. Apparently they blurred in February but not quite as bad, and even on the 2010 one there was a slight blurring. She did a letter for my gp and told me I had to go urgently to be referred. That's was on Friday evening so on Saturday morning I went straight to the dr with the letter from Specsavers. She it told me she thought I had ms, which although was a shock seemed the better option after I'd read on the Internet that it usually means a brain tumour! She arrange for an appointment at the hospital for the Tuesday. I was seen by a very arrogant dr who didn't seem. To believe a word I said, until he looked into my eyes and went into a panic! Out came a book of eyes which he sat an looked through and then called his boss in for a discussion about me whilst I was sat there! He informed me I have very swollen optic discs and I shouldn't have left it so long to see someone! He then told me it was an emergency and I would have to be admitted so sent me to the waiting room to get it sorted. 2 hours later he still hadn't arranged anything and told me I had to go to A&E for them to deal with it! The dr in A&E was lovely, but totally unable to deal with the problem. He arranged for me to have a ct scan but was overruled by the radiologist who said I actually needed an MRI scan so come back tomorrow. I went back the next day and had the scan and was then seen by a different eye dr who actually knew what he was doing. He told me he thought I had IIH (which I'd never heard of) but couldn't say for definite as I would need to see a neurologist which he would arrange. I got a phone call at home that evening from the neurologist to say she was arranging a lumbar puncture for Monday or Tuesday the following week. She asked me tell her my visual symptoms and when I mentioned that I was blind in my eye first thing in the morning she said she would try to get me in sooner. She called me Friday morning and asked me to go in for a consultation and a lumbar puncture. My opening pressure was 37.5. She took me down to 15 and is arranging another one for 6 weeks time. She has put me on acetazolomide which is giving me horrendous tingling in my feet, hands and lips and has told me I need to lose weight. I have actually been dieting for the last 3 weeks anyway and lost 7lbs. I am overweight but I am not obese and I do wonder if sometimes they look for any easy answer.

I have done a lot of research on this condition on the Internet and most of what I have read scare the life out of me.

Sorry that this is so long but I though I may as well put everything in!!

Thanks for reading

Hi Tanya and a very warm welcome to our group forums. There is no need to apologise for the length of your posts, we encourage you to have your say no matter what it is.

I know how scary it is at first, especially when you are misdiagnosed and left in limbo. It's a bittersweet diagnosis because you're so relieved it isn't a brain tumour or anything of that nature, only to be told it's IIH which has no cure but can cause vision loss and the treatment and medication difficult.

Hopefully now you are on Diamox and despite the side effects, your pressure will be controlled and you'll get some relief from the headaches and vision disturbances. I wish I could say that it is going to be easy from here on, but there is a lot of trial and error involved with this condition, but we are here every step of the way with you, and will give you as much help as we can.

We do try to encourage sufferers who have had success to share their stories, some do, but some feel that once they have achieved either remission or stability, that they don't need to visit the support forums again. There are success stories, even our own Sinister416) has managed to achieve remission after 2 years, and is now free from medication and symptoms, so never give up hope that it could happen to you.

You're also right that weight is an easy option to blame on IIH, probably because the ones who are overweight, are the ones who do tend to reach remission after weightloss, but there are many of us who have other triggers such as hormones and other conditions, even ear infections.

We have lots of information and helpful booklets which I am sure will help you and don't hesistate in asking questions in the group huddle, or even have a rant in there. Most of all remember you aren't alone you are now part of a community that knows exactly how you feel, and understands everything you're going through.

Heidi xxx

Hello Tanya and indeed,

You may find it helpful to keep a daily log, of your symptoms and your meds (both are available on this site). As Heidid has said, IIH is a life altering disease, but it can go into remission, for even many, many years at a time. You will probably need to try different meds or even combos of meds to find what will work best for you. But, it will get better. So, hang in there, and feel free to stop in anytime. We are universal, so there is often someone around to talk to. ;)

Hi and for your replies.

Can anyone tell me if the side effex of the tablets wear off or are there for a long as you take them? And how I now know whether I have a "normal" headache, a headache caused but the tablets or an IIH headache? I'm very confused xx

I don't think the side effects do ever go away, we just get used to them. Kind of tend to ignore them too. I have been on Diamox over two years and as long as I don't "think" about it, I don't notice the tingles.

The headaches can be a bit more tricky. For that I would recommend using a headache/symptom log and keep track of what triggers the headaches. Write down what you ate, what meds you took, what the weather conditions are, the extend of physical activity, if something obvious sets off a headache (I hate to sneeze because I know that one is soon to occur) and also what makes you feel better. Then it will be easier to sort out which is what.

And not to worry, we are all confused about IIH. Symptoms change, treatments change, opinions change. This is one super challenging disease!!

Hi Tanya! Sorry I'm late to the conversation, but I just wanted to take a minute to welcome you. IIH can be very difficult to diagnose and treat. It's a rare disease and it isn't life threatening, so I'm afraid there isn't a lot of research available. IHRF has made a lot of progress and is probably the most reliable resource.
Unfortunately, IIH symptoms vary and everyone responds differently to treatment. Some members have found symptoms fade after awhile, some get used to them, and others have been unable to tolerate meds at all. I would contact your physician if they seem to get worse or interfere w/ daily functioning. A symptom log may help you sort it all out and give the doctors more information.
There's a lot of information throughout the site, so check it out and let us know if you have any questions.
Take care,
Julie