Hi everyone,

I've only recently registered on here and thought I would share my experience and introduce myself to everyone.

I'm 28 and live in the UK with my husband and 3 year old daughter Scarlett.

My Story

I had no idea there was anything wrong with me and went along to my local supermarket opticians for a free eye test as these were on offer at the time. I had not had an eye test since high school and even then it was just the type where you cover each eye in turn and read from a chart on the wall.

The optician checked my vision and did all the routine checks then asked me if I had experienced any issues with my vision recently. I replied no and then she said she needed to check something with another optician. She returned and asked me where the nearest A&E department was and if I could get there easily. At this point I began to really panic and when I asked her what was going on she said I needed to go straight to A&E (she advised me not to go for dinner with my daughter and sister as I had planned) and go straight away.

I left the examination room and burst into tears at the information I had been given. I went straight to A&E as instructed and after a short wait was seen by a neurologist. He checked my eyes and advised that I had something called papilladema or swollen optic discs and this was a symptom of a condition called IIH. He explained that I would need to have an MRI scan done to eliminate any other cause of the swelling (i.e a tumour) and then a LP to check the pressure in the fluid around my brain.

I left the hospital in a complete and utter daze not knowing what to think and all I could do was cry!

I then received an appointment through for the MRI scan which was on my birthday! The results of this were fine so next was the LP. The actual procedure was fine apart from the fact that my neuro had trouble locating the correct spot to draw fluid from so tried several times. The following week was the worst week of my life though! I had a post LP headache and could not get out of bed for days! My opening pressure was 27.5 which my neuro told me was not overally high ad certainly wouldn't be treated with medication. He then said he wold refer me to an eye specialist regarding the swollen discs and I received an appointment from the ophthalmology department shortly afterwards.

At this appointment, my eyes were checked thoroughly and I was told I needed to start taking medication to reduce the swelling immediately and I was given Diamox 500mg a day. I then saw the ophthalmologist every 2 weeks until I was referred back to neurology.

This time I saw a different neurologist who said the swelling in my eye did not appear to be angry (although to be fair he had nothing to compare this to as I had not seen him before). He indicated that the swelling could have occurred some time ago and it just had not been picked up as I had not had an eye test in so long. He advised me to continue with the Diamox and to lose weight and he would see me again in 6 months which will be Jan/Feb 2013 time.

I have so far managed to lose approx 17 lbs since this visit in Aug but have found it really hard going. I started off at approximately 14st, 5lbs so still have a long way to go yet.

Now 8 months on from the initial diagnosis, I am still dazed by all of this and some days are better than others. I have some issues with my vision like cloudy eyes (my term for cloudy or foggy vision) and occasional headaches. I also have tinnitus in my right ear that drives me mad but I did not really begin to notice this until I began to take the Diamox medication so am unsure if this could be causing this or worsening this. I also have vertigo which again am unsure if this is related to IIH or not. I just want to be able to lead a normal life again without the constant worry of IIH.

It would be great to hear from anyone else suffering this condition and this forum has certainly made me feel better as I now know I'm not alone and others are going through this experience too.

I hope my story has made sense and please feel free to add me as a friend on here!

Thanks

Hi Melissa, and welcome to the group! You are definitely not alone and I'm sure if you've looked through the site you've come across some very similar stories. It's completely overwhelming, and considering your experience it sounds like you've handled it quite well..congratulations on the weight loss!!!

Keep us posted on your progress and let us know if you have any questions or concerns along the way..we'll do our best to help you through it!


Julie

Hi Melissa and welcome.
I find it so interesting that you didn't have any symptoms of IIH before the eye docs found it.
Unfortunately Diamox does have it's issues, but hopefully your docs will continue to monitor you and keep things from getting any worse. Keeping fingers crossed.

Hi Melissa and a very warm welcome to the group . I know it probably feels like you've had a bomb dropped in your lap, because the IIH has come out of the blue. It does take some time for it to sink in, and to boot you have to cope with the side effects of the Diamox.

All the things you are experiencing at the moment are common with IIH, and also with the Diamox. You may even notice that with rainy/stormy and overcast weather you may experience headaches, and during period times too, because the IIH seems to make us more susceptable to Barometric and Menstrual migraine, which could sometimes be mistaken for high pressure. We have an A-Z list of headaches that we commonly experience, and it might be an idea to familiarise yourself with them, so that you can recognise the difference.

Congratulations on your weight loss that is fantastic!!

Ask as many questions of us all as you want to, and you can even have a rant, we all need to let off steam at times, so why not do it where we understand. I'm so glad you found and I look forward to getting to know you better.

Heidi

Thanks everyone for your comments and advice, it's really helpful to know I'm not alone and have somewhere to come and rant and let off steam.

Wylee - I had no clue that anything was wrong like I said and even when I saw the neuro doc he seemed very surprised that I did not suffer from the bad headaches that are so common with IIH.

I have had a few more headaches than is normal for me this last week but I am putting this down to working far too much (have only been working 2 days a week for the last 3 years due to having my daughter and this week O have worked 6 days staright) so have put it down to the stress of this.

Heidi - I also only recently found out that the weather pressure can affect the headaches too as well as symptoms worsening when you have your period. I guess there is so much more I will learn about IIH and this forum will definetly help.

Thanks for making me feel welcome

Hi Melissa! Sorry I'm a little late welcoming you to our group! I hope you've found it to be a great source of help and support so far. I know it is for me!

I think it's great that someone caught your IIH at an early stage before you were experiencing real bad symptoms. I know what you mean about sometimes not knowing whether it is IIH or Diamox side effects causing you to feel bad ... I'm in the same boat. But overall, I've done quite well managing IIH over the past almost 3 years now. Weight loss was a big help for me too, so keep up your great work with that! It really does make a difference in some cases. *hugs*

Hugs! My story feels similar to yours! When I went in I was barely having headaches and if I did, they were not bad and my vision was slightly off but nothing alarming. Since then it's gotten worse :( I am also on Diamox, 1,000mg/day but my LP was higher (34). I remember the EMOTIONS and feelings you felt when they say go straight to the hospital...it's TERRIFYING!