Hello. My name is Melissa, I am 39 and I live in Oklahoma. I have had IH since 2009. I am on my 2nd vp shunt. I have had many issues maintaining my shunt. My dr said last week that my shunt re-set itself to a different setting. This was strange – mainly because when I first was getting my shunt my I asked him what precautions I would need to take and what type of things could change the setting. He explained that I need not worry (except airport scanners). I was wondering if anyone else has had this same experience? I can not seem to find a setting that works for me. It is becoming very frustrating because I am getting worse everyday. The reason I went with the shunt option was because it seemed like I could get the best results with it. Anyway, I am happy to find this site and hope to learn more to be able to educate myself and try other options and remember that there are other people through this same thing. Thank for reading! 

Hi Melissa and a very warm welcome to the group. I know what you mean about the shunt, it is frustrating and it seems a lot of us experience this kind of thing. I know with myself I was on diamox with my first shunt then later on after a revision from LP shunt to VP shunt, I ended up at one point having 2 shunts and then eventually a shunt and a subtemporal decompression and then another subtemporal decompression, so I now have the decompressions and a vp shunt. That doesn't mean to say you will go that route yourself, it was just that my chronic IIH was hard to manage and that was the best option for me.

I think the settings we get are usually trial and error, I'm not quite sure how they base what our setting should be, if it's done on averages or individual need. Do you still take any IIH medication? If not perhaps asking your Neuro's whether or not it would help if you did might be an option.

Are your headaches all the time or have you noticed they are certain times, such as your menstruation and bad weather. We tend to suffer these more than the average person and I think that's to do with our pressure. We have an A_Z of headaches that are commonly experienced with IIH and might be worth a look at.

I hope you love it here and I look forward getting to know you through your posts, as I know our other members will.

Heidi

Hi Melissa. I want to add my welcome to you, too!

I have a lp shunt that I think may need to be adjusted. I am not getting the kind of response I was hoping for. We are trying to "fix" things by changing my meds first. As Heidi said, lots of trial and error.
Hope you are able to get on the right track soon.