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idiopathic intracranial hypertension

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megan_51917
megan_51917

Hi everyone

Im a 23 year old female, and have been suffering from iih for 2 years now. Sadly i feel my neurologist isnt the best and keeps saying i need to lose weight, i have always maintained a healthy lifestyle and im 5ft 5" and weigh 11stone. IIH has caused me to have chronic papilledema. I feel really deflated with this, and dont really have alot of my questions answered, my main one being why is this happening? and is there anything we can do to help the pain? i have been prescribed loads of medications and nothing seems to even take the edge off. i have had so many lumbar punctures the neuro has raised concerns around how many is too much? Can anyone shed some light on this?

Thanks in advance rolleyes

0 likes, 3 replies

3 Replies

  • karin53216
    karin53216 megan_51917

    Posted

    Hey

    Hope your doing ok , I'm 18 yr old female was diagnosed 2 days after I turned 18 , I went through the whole thing like you lumbar punctures , medications that made me more sick and a Neuro that said 2 weeks before I had 8 exams oh we will just keep doing the Lp .My amazing mother bent over backwards to find a good Neuro that turned me inside out. I have lost nearly 1/4 of my body weight about 5kg away from perfect weight being skinny does not run in our family but still no excuse , I feel I have a pretty balanced lifestyle with what I eat.

    I would definitely suggest finding a good Neuro which is not a easy task we flew overseas to find ours because I wasn't getting any better and had papillidema too lucky for us I'm with the head of the neurology team for the hospital and she is amazing .EVERYONE who has this illness there biggest question is why ? Why did it begin ? What was the cause ? .Still not known even to doctors I had 32 blood tests and they picked up nothing I have always been healthy even as child I would skip flu seasons but definitely making up for it now haha .'For the pain I'm not really sure but am happy to talk to you you can private message me on here if you want otherwise I wish you all the best and hope you get better and find a good Neuro . I guess all we can do is Hope that someday things will get easier and they will find a cause and a cure without any invasive brain surgery. I hope I have given you some peace of mind . Thanks

    • megan_51917
      megan_51917 karin53216

      Posted

      Thank you for taking time to reply to me.

      I am really new to this forum and have to idea how to private message you, but I would love to chat!

      Today is a bad day for me, I am really struggling to even lift my head! Feels like such a weight on my neck. It's horrible.

      I am so glad you've found a good Neuro I know how hard they are to come by.

      I really don't believe at this stage it's a weight thing... Since starting to investigate these pressure headaches I have found out that I also have poor sleep quality and have several apnic events per night, I wonder if that has anything to do with it?

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