Hello everyone. My name is Zoe and I’m 32. I live in The west Midlands. As a child I suffered with meningitis and was prescribed something called septrin. I became very poorly and was diagnosed with BIH as an adverse reaction to sulfonomides. That was 23 years ago and until March this year I have been symptom free with no reason to ever suspect it would come back – I always thought that as long as I kept away from sulfonomides I would be fine.
In March this year I started with headaches, visual disturbances and pulsating tinnitus. My GP was adamant it was stress but eventually my optometrist sent me to the eye hospital who confirmed IIH within 10 minutes of my arrival. The Ophthalmologist told me to go and see my GP and they would see me again in 6 months. My GP arranged for me to see a neurologist who said it wasn’t IIH but would do an MRI. MRI was all clear but my vision became worse and I was admitted for an LP. I was told it was IIH and the pressure was 33 but reduced to 27 through draining fluid. I was given Diamox and discharged – with no follow up appointments.
4 weeks later I collapsed and was taken to A&E – apparently Diamox has sulfonomides in and I experienced a bad reaction. Again I was discharged – still no follow up. My GP has put me on Topamax with has helped with the headaches but I keep sobbing uncontrollably. My GP has rang and written to the hospital but I still have no follow up.
So I feel a bit lost really. Lots of questions and nobody to ask. My GP admits he has never treated anyone with IIH before and is reluctant to do too much. So I am pleased to have found you guys.

Hi Zoe! Welcome to the group! I'm so glad that you've found us and I hope you'll find this site to be a great source for support and information. It's been so nice for me just to have people here who have been where I'm at and can relate to what I'm going through. We're not alone with our IIH anymore!

I'm so sorry to hear about all you've been through and that so little help has been given to you through your doctors. What part of the world do you live in? I'm suprised that with your GP having called and written that you still have not had any follow up from the specialist. Perhaps you could ask your GP's office to try following up with them again?

In the meantime, check out our section here called "Recommendations for You" ... there are a lot of helpful guides and printouts there that may help answer some of your questions about IIH. And of course, there are many here who have lots of experience living with IIH and we're all happy to help. Feel free to ask us any questions, or just to vent whenever you need to. That's what we're here for.

*hugs*

Zoe what a nightmare you've had, I am absolutely shocked that they discharged you. That is appalling, and you should never have just been prescribed Diamox and then discharged. Your IIH neeeds to be monitored at regular intervals by both a Neurologist and an Ophthalmologist.

As an NHS patient you have NHS patients' rights and they have been blatantly ignored by this Neurologist, and he has totally disregarded the fact he has a duty of care to you. I would contact your hospitals PALS who will listen to you and any complaint and mediate for you.

Any questions ask away and if you want I'm happy to give you my number.

Heidi xx

Hello Zoe, and

No symptoms for so many years and then they came back. What a nightmare that is :shock:

Please listen to Heidi's suggestions!! She knows the system. Our systems here in the U.S. are a bit different, but, we also have some jerks who are doctors. Keep fighting for that follow up. You need a plan of action so you won't be forgotten.

I hope you start to feel better soon.

Thanks for the replies. Its so nice to be able to talk to people who know exactly what it feels like.

Heidi - it seems so bizzare that I have been discharged. It appears to be some confusion because my neurologist is semi retired and only works 1 day a week. He sees patients for initial consultations only and then passes them on. He did indeed pass me on to a surgical ward at another hospital who performed the LP but the neurologist there doesn't want to see me as I'm not his patient. So my initial neurologist won't see me at the first hospital and the second hospital keep sending my GP's requests back to the first one. The hospitals are in two different health authorities so I just don't know who to complain to - and to be honest I'm too tired for a fight. I will give PALS a ring.

The Topamax seems to be helping with the headaches - just not my vision. I don't want them to up the dosage in case the crying fits get any worse. I need to keep working so am happy to persevere with the topamax for now and hope the mood swings calm down.

Thanks for making me so welcome

Zoe, bless your heart! Sorry I'm late with my welcome, but I'm also glad you found us. It sounds like you're just stuck. I wonder if the first neurologist would be willing to contact the second or make an official referral since that's his primary function. I would definitely mention the crying spells to your GP in the meantime..it is a side effect that can go away, but it can also get worse. You might consider keeping a symptom log just to track any changes.

Hang in there, and let us know if there's anything we can do to help!
Take care,
Julie