Not been on for a while as I started back at work, was very stressed, headaches worsened so neuro added topiramate, this was then increased to twice aday. I thought I had then cracked it, things were going so well, headaches weren't painfull as such bearable pressure really.

Then as I can't work at a fast pace as I used to and multi task doing umpteen jobs all at once, work arn't happy, thats when things started to go down hill. Stress levels rising and work being unsupportive I am now off with stress and the heads a pain with the eyes and run me down so I'm ill as well.

Its such fun, they were fine when I was off on maternity and been diagnosed as it didn't affect them then.

Waiting for my neuro appt but if can get the stress sorted think my head will be sorted. Seeing occy health next week so I can have a rant at them.

Anyone else find that work, bosses and collegues don't seem to believe you, support you. I don't think that my manager even knows what I have (despite me informing her when I was diagnosed) as it didn't effect her until I returned to work and the term stress related illness has been used!!!!![You must be registered and logged in to see this image.]for looking my rant is over for now, hopefully wont leave it as long next time and will not be ranting, but saying how brill my syomtoms are under control, because i do really have an excellent neurologist and hes young so hopefully will get to keep him for many years to come, so it needs writing into his contract that hes not allowed to move hospitals or specialities.

Jo, what you are reporting is unfortunately very common. It is difficult for others to deal with our "invisible" illness. There are some handouts on the site that you can print off that can help explain what we go through. That may help. Also the "spoon theory" will for sure be of use. Try to get as much printed stuff together as you can before you start seeing the people in "authority." You need them to back you up.

Thanks Wylee will have a look and print them off, as the stress does not help at all. They seem to be all full of promises we're here for support etc etc but when it comes to it they are not interested.

I'm really sorry to hear it, and completely understand. I was "released" from a job before IIH was controlled and have ongoing issues w/ my current employer, eventhough I was fine for 1st year and ok now. In the US we have FMLA that protects us for up to 12 weeks of absences in a given year. I'm not sure if you have anything similar, but I'm thinking there's at least an advocacy group. Hopefully Heidi or someone more familiar w/ your area will see your post and lead you in the right direction.

Just know you are not alone and feel free to rant anytime!

I can totally relate to how u feel as I was struggling in a similar way at work after I went back not managing to do things as quick or do as many things at once etc. Fortunately work have been very understanding. Hnever I note that you have been put on toprimate. I was put on toprimate in the summer last year as I was not managing diamox very well. I cope very well on toprimate and headaches went and I started taking the maximum dose just as I was going back to work. I struggled at work as I have said I was very stressed and forgetting very basic things and I kept forgetting what I wanted to say. At times I felt like I was on speed.Anyway to cut a long story short I ended up going off sick.But after talking with my nureologist I dropped my dose of toprimate and the change has been quite significant. I don't feel stressed and can manage to concentrate on things a lot more.

I know exactly where you are coming from. I worked for the nhs hosptal trust that I had always had my treatment for IIH at, my first manager was really good about my LP's but my Supervisor was such a nightmare I asked her to come to an appointment with me so get her to understand. However, when I needed my first shunt both her and my new manager were so awful both before, during and after, that I went to my Union and transferred to another department. Then when I needed a shunt revision all of a sudden my job was redundant! That was the nhs so if they aren't sympathetic what chance do we have of other employers! On the positive side, I did go to tribunal though and was successful.
Make sure you give them all the information about IIH see Information you need to give to employers etc especially HR and Occupational Health and your Manager and so on.
If you have major problems at work because of your IIH and aren't in a Union you could always contact ACAS for some advice.

Thanks for that, Have been in touch with my union, and they are helping me out alot at the moment. got my next neuro appt on 19th so can see what that will bring. hey ho just keep thinking positive, as I think I've hit as low as i can possibly go at the moment [You must be registered and logged in to see this image.]