After some more info/reassurance please

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Forum rules
The General IIH Questions and Answers board is for posting general questions about IIH that don't fit into one of the other specific categories on the forum. If you're not sure where it goes, post it in here, and if a moderator feels it's more appropriate in another board. Below are some points to remember when posting on this board, and also some guidance on what not to post on this board and where it's more appropriate to put it.

General posting guidelines for the board:
  • please post only general IIH related questions in this board - specific questions about particular aspects of IIH should go on the relevant board in the "Discussions section of the site, i.e. 'Medical Treatments', 'Surgical Treatments', etc.
  • please remember that we're not doctors, and shouldn't be giving medical advice - please see the relevant sections in the forum's rules about medical advice and prescription medication. Sharing your experiences of what's worked for you and your IIH is fine, but you shouldn't be telling other members things like, "If you take X, Y and Z it will improve your symptoms" - there's more guidance on this in the forum rules.
  • please start a new thread for each of your questions, which will help other members who are searching for information on a specific subject and allow others to comment on your questions. If you're commenting on another member's post, please don't add in another question of your own to the discussion - start another thread for it.

What shouldn't be posted on this board:
  • news of your latest appointment, your progress following surgery, progress on a new medication etc. should not be posted on this board, but should be posted in the "Members' stories and updates" board
  • if it's a specific question about a particular treatment, please post it in the appropriate board within the "Treatment" section of the forum
  • Introductions should be posted on the "Introductions" board in the "Members' Area" of the forum
  • more general posts about how you're feeling related to IIH should go in the "Need Support?" section of the forum (registered members only in the 'Need Support?' board)
  • this area is for IIH related discussions only - general conversations, jokes etc. should go in the "Members' Area" - general conversations in either the "General Chat" board, or the "Members Lounge" (registered members only in the Members' Lounge)
...and of course as always, play nice and stick to the rules. ;)


This board is for general questions and answers relating to IIH only. Any other posts will be moved into the appropriate board by the forum staff.
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Posts: 1
Joined: Tue Mar 28, 2017 9:47 pm

After some more info/reassurance please

Post by Chloe369 » Wed Mar 29, 2017 12:50 pm

Hi all, Sorry if im posting in the wrong place? Ive only just joined this sight. This might turn into a long post so I'll try and make it as short and put in as much info as i can.

I was diagnosed with iih in december 2016, didnt have any symptoms at all!! I took my daughter to get an eye test and as I was there and it wasnt busy I asked to get mine checked too! Was getting them checked and the lady stopped, got second opinion and sent me straight to a&e!! From there I was in hospital for 5 days, had ct scan, many tests and a lumbar puncture. (I measured 29 on the lp which i was told was very high as it should be between 10-15??) any way was then sent home with acetazolemide 3x a day. These were awful and i had to call my gp and get them changed, i was the most ill i have ever been in my life! Literally couldnt move had really awful effects from them, i think because i have hypermobility since i was a child that the meds made my joints terrible? Anyway im now on the slow release ones since jan and have been fine up until last week i started to get head aches and occasional blurred vision. I had to go to eye hospital a&e and they have upped my dose and booked me in to see my consultant next friday!

Since going hospital a few days ago i am really worried and cant shake the feeling, he checked my eyes and the optic nerve swelling on both eyes has gone worse :( i really wasn't expecting this as ive been on the meds since january so was hoping it would have gone down atlease, definitely not gone worse!

Has anyone else been in a similar situation and what was the outcome?? Maybe the consultant will get another lp done when i go next friday?

Sorry its a verry long post. Im just really worried and feel awful my headache has gotten worse again due to upping the dose and my joints are abit sore, im going to keep taking them though and see if there in any change by next week! Sorry im rambling just dont know what to do and nobody really knows about the condition so its hard talking to people. Im 26 with 2 young children so i want to be as well as possible :(

Any advice or tales of similar situations or your stories would be great!

Hope everyone else is feeling well :)
Chloe xxxx

Clare Parr
Posts: 270
Joined: Thu Mar 02, 2017 10:46 am

Re: After some more info/reassurance please

Post by Clare Parr » Wed Mar 29, 2017 2:18 pm

Hi Chloe,
It's a lot to take in at 1st. There are other medications they can try you on. Many of them can deplete your potassium levels like Acetazolamide does and having lots of potassium rich foods in your diet can really help with that and ease the pins & needles.
There are a few with hypermobility in our Facebook support group IIH SUPPORT UK may be worth joining there too.
Keeping well hydrated and eating healthy food to give your body the best chance to stay strong can really help.
Propping yourself up at night with an extra pillow or two can help too, a V shaped pillow is great for support.
There is info on the website about done tests you may have next and treatment
Hope things go well next week hun and you are not alone x
Facebook - IIH Support UK

Posts: 30
Joined: Mon Mar 20, 2017 10:29 am

Re: After some more info/reassurance please

Post by Hannah01 » Fri Jun 09, 2017 5:53 pm

Hey Chloe, welcome here you are at the right place. Its happens accidentally but it is better to have the diagnosis and i can understand the anxiety is natural. Hope things will move in the right direction. I wish you all the best

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