hello, i have just been reading your posts with interest.
I was diagnosed with IIH 4 years ago when i was 29 and have been quite lucky in regards to symptoms even although my regular LP's (approx every 8-10weeks) have opening pressures of 45+. i only experienced visual distortions, temp blindness, head pain but compared to some people with iih this is nothing.
This all changed four months ago, when i stupidly ignored symptoms due to trying to meet a work deadline and now have permanently damaged eyesight, continuous head pain, constant nausea, balance problems and struggle with all activities of daily living to the point i have hardly been at work. Have even considered giving up my much loved job that i spent 8 years at uni studying for!!..but iih ain't winning! also the impact on my mental health has been worrying..it has been a struggle to keep in good spirits as im sure you're all aware.
anyway..met with my consultant yesterday and im getting a LP shunt put in next week..hurray!..due to consistently high pressure and now the risk to my eyesight is at red alert. i am aware of the risks and recovery can take up to 5 weeks and i am certainly not looking forward to a few weeks of continuous low pressure headaches (when you try and stand and feel your brain is being ripped out from the inside-sorry no other way to describe the worst head pain in the world..i get them for up to a week after each LP but we are all different!)
i have met with a few people who have recovered from LP shunt surgery (VP shunts not always suitable for iih sufferers due to our reduced sized ventricles) and it appears that the relief this procedure has given them is quite unbelievable...although they had surgery between 4-8months previously. No.... not all symptoms go but they are living a reasonable quality of life and feel that they are not quite 100% but "more like 85-90%"..and i think that is super considering with this condition, it effects every part of your life and you feel 30-40% of the person who you were pre-iih. The common theme in recovery was the constant low pressure headaches for a few weeks...(but i think this is expected considering our brains are used to high pressure)..hence the need to lie flat.
i wish you all well with your procedures..i probably sound daft but i am really looking forward to the LP shunt and the improvement in lifestyle in a few months time.
Sue.
I was diagnosed with IIH 4 years ago when i was 29 and have been quite lucky in regards to symptoms even although my regular LP's (approx every 8-10weeks) have opening pressures of 45+. i only experienced visual distortions, temp blindness, head pain but compared to some people with iih this is nothing.
This all changed four months ago, when i stupidly ignored symptoms due to trying to meet a work deadline and now have permanently damaged eyesight, continuous head pain, constant nausea, balance problems and struggle with all activities of daily living to the point i have hardly been at work. Have even considered giving up my much loved job that i spent 8 years at uni studying for!!..but iih ain't winning! also the impact on my mental health has been worrying..it has been a struggle to keep in good spirits as im sure you're all aware.
anyway..met with my consultant yesterday and im getting a LP shunt put in next week..hurray!..due to consistently high pressure and now the risk to my eyesight is at red alert. i am aware of the risks and recovery can take up to 5 weeks and i am certainly not looking forward to a few weeks of continuous low pressure headaches (when you try and stand and feel your brain is being ripped out from the inside-sorry no other way to describe the worst head pain in the world..i get them for up to a week after each LP but we are all different!)
i have met with a few people who have recovered from LP shunt surgery (VP shunts not always suitable for iih sufferers due to our reduced sized ventricles) and it appears that the relief this procedure has given them is quite unbelievable...although they had surgery between 4-8months previously. No.... not all symptoms go but they are living a reasonable quality of life and feel that they are not quite 100% but "more like 85-90%"..and i think that is super considering with this condition, it effects every part of your life and you feel 30-40% of the person who you were pre-iih. The common theme in recovery was the constant low pressure headaches for a few weeks...(but i think this is expected considering our brains are used to high pressure)..hence the need to lie flat.
i wish you all well with your procedures..i probably sound daft but i am really looking forward to the LP shunt and the improvement in lifestyle in a few months time.
Sue.
hi i had a lumber puncture a week ago and lots of other tests like mri etc they said that my spinal fluid pressure was 28 and should be 15 yet the docs did nothing about it. the reasons for having the tests was coz i had head aches back ache and my arms and legs felt very heavy and had problems walking, i also was very tired. The docs sent me home on friday even though i am not any better and to make things worse i am now constantly dizzy and find it hard to concentrate. do i have IIH? what does IIH stand for? thankyou xxx
hi i was diagnosed with iih in february 2008, after 15 years of treatment for migraine. i have lost 90% sight in one eye and 20% in the other. i had an lp shunt in april 2008 which took me 6 months to recover from, i had a couple of months where life was pretty good, now i am back to square one again.
Hello there,
I have just been diagnosed with PTC in the last three to four months and it is a little overwhelming! First they scare the c**p out of you, then they try to let you know that we are going to 'see' what we can do to fix this. Well, I have had the MRI's a spinal tap, and the heavy meds'. and it seems that nothing is working. I am having memory problems and of course vision problems in my left eye. What comes next? I have been on here reading from all of your postings and seeing if a LP shunt would benifit me. I see that many of you have had good and bad things to say about them. I go back to the Neuro. Dr. in a couple of day so I will see what they have to say about a shunt possible. I guess my biggest question to ya'll is have any of you had any kind of memory problems?
I am no doctor but you are listing all the symptoms of idiopathic intracranial hypertension I.I.H please see your doctor or request another doctor. I have I.I.H it a nightmare they say it's not fatal but it sure has a massive impact on your life. Please do not let the doctor fob you off be a pain in the butt and keep going back take care.