Hi everyone - I am Bonnie, I have been reading all your stories for a few days now and have finally
plucked up the courage to post something. I too went for a routine eye examination and was sent straight to hospital
as my optic nerve was swollen. I did have headaches and pain over my right eye and put it down to migraines. I have been
for a mri and all was normal. Finally diagnosed November last year, Neuro put me on amitripolene 40mg and told to come
back in 6mths, I am currently in bed have been for 2 weeks, 2 trips to the A and E department, was admitted but could not
find my notes to confirm diagnosis so sent me home with a "Tension Headache".

My doctor has put me on tramadol 100mg but on a few sites there have been mixed reviews on this? Not that it helps, i
feel even more nauseous. I am waiting for a emergency appointment with my Neuro and most probably will have a spinal tape.

Could you please let me know - how do I explain this to my family and friends all think that i just have a headache and as we
all know its soooo much more than that.

Thanks
Bonnie

Hi Bonnie..welcome to the group! It sounds like you have a lot going on right now, so I'm glad you took a chance & joined the site. There is a section that lists helpful user guides & print outs that may help you talk to family & friends. You can also see if they'd be interested in this site or refer them to ihrfoundation.org for more in depth information. I also know some members found more support once family or friend accompanied them to a doctor appiintment..some people need validation from a professional. Check out the site & let us know if you have any further questions or concerns.

Take care,
Julie

Hi Bonnie, and

Have you not had a spinal tap at all? That is usually how the determination of IIH is made. Hopefully, you will have one soon, where they can draw off fluid to reduce the pressure which will give you relief. Then you resume the diuretics to help keep the fluid level down. Seems to be the best bet.

Don't be afraid to pop up and ask any questions you or your family may have. We are not medical people, just folks like you that have been there and done that.

Hi Bonnie and a very warm welcome to the group. What a rough time you are having at the moment, so I'm so glad you joined. I know it makes it more frustrating and upsetting when your family and friends don't understand what this disease it, so we have put together a booklet that hopefully will help you Informing People About Your IIH and we also have this helpful information A Way To Explain IIH To A Non Sufferer As Julie said you can also get them to visit the IH Research Foundations website www.ihrfoundation.org as they also have lots of helpful information about IIH.

Hopefully when they learn all about IIH and what this disease entails, they wil have a greater understanding of what you are living with. The more they understand the better they can support you, and the easier it will be for you to cope with.

You aren't alone, we are all here to support you and help you, even if you're having a much needed rant.

Heidi

Hi Bonnie! Welcome to the group. I'm glad you found us, and I hope you'll feel as encouraged and supported here as I have. And I'll echo what everyone else has already said ... check out the section here in Useful Guides and Printouts and the website for the IHRF for resources on talking with your family about your IIH. In addition to those, there is a really great video on YouTube here:

https://www.youtube.com/watch?v=VRKbnjUvgs0&list=FLKwznYE_Gs5UzNPGwPjMJIg&index=8&feature=plpp_video

It features several people with IIH talking about their lives, and it was very effective for my family members to watch this. Hope it's helpful for your family, too!