Has anyone had IIH disappear and then come back?

Jess Hi. I havn't experienced the same but would ask if you have you put on weight lately as that could be a reason behind the reappearance of symptoms.

I may have put on a few extra pounds over Christmas, but nothing major...

I have started trying to loose some weight in the hope it could help!

LOL, no I doubt a few pounds would be relevant. I only asked as I lost 3.5 stone and it helped enormously with symptoms. The problem is keeping the weight down now so if I put any weight on, I immediately start to get headaches and dizzyness back.

Jess, I was told that once you are diagnosed with this, that you will always have it. It can go away for months or years and reappear. I was diagnosed in 2012, but really wasn't that concerned about it. I thought Oh well that explained a few things I was experiencing, but not really a problem. Then on Valentines day 2013 I was knocked flat from a migraine, slurred speach, vision, so much pain. From then on I have had major symptoms. I have had so much support from my family Dr. he has been great and willing to try different things. My headaches are more controllable, I can take meds for Dizziness and nausea. My eye sight is just now giving me fits it get better some day day and I don't always have all the problems. Some days it could just be my balance, and others headaches nausea etc... I know some triggers and try to adjust for them. It is a fight. I am twice your age though. I am having to take a disability retirement from my job, becuase of all the work I have missed and due to my frequent migraines and moderate to severe memory loss. I have been so stressed and sick the last year. I get depressed, and mad, and mental. So after next week my last week at work, I am going to try to reduce stress, get into a walking routine. I may even attempt yoga if my balance will allow, I have heard it is good for your body and your mind and helps reduce stress. I am sending good wishes your way. Don't let your Dr. make light of your issues, I printed everything I could find about our condition and underlined all the problems I was having, and have given copies to all my Dr's and family and friends. It can be really hard on family too, My family has worried about me and are glad I will be at home and trying to cope and get better. You need support. Keep me posted, I live in the deep South and I know your Health care is different, but I have talked to several people here in the States and in the UK and we have all had similar experiences. Try to stay positive!

Another long story but i'll try keeping it simple. My daughter was Diagnosed withIIH last May aged 13 but after a Lumber Puncture never really recovered, in fact was unable to get out of bed. In aug she was then diagnosed with ME. We have been having eye tests to check her vision and the pressure on her optic nerve as she still has constant headaches.

Her eye tests have been clear and they are saying her headaches are the ME as some people suffer not only extreme fatigue but pain with all the nerv endings being affected.

We had a follow uo appointment with the nurologist last week and i was asking id she still had IIH. The neurologist said it had gone away. I asked if this was possible and she said yes but could come back in the future usually with triggers like going on the pill (not usually recommended with IIH) and at the time of any pregnancys. Could it be that you are on some form of contraceptive that could have triggered this?

Thank you both for replying, I'm so sorry to hear of your struggles, it is completely life changing and I feel for you both and your daughter! I wish the docs would have told me about the pill as I have been on it for about a year now... I saw GP on Friday and she has taken me of all meds and painkillers which I'm struggling with! But makes complete sense with your comment on contraceptive pill being a trigger.

I am due to hear of an emergency appointment with the Neurologist this week and they want to do another Lumbar puncture urgenty.

I can completely sympathise as I remember not feeling well at all after my lumbar punctures, in fact they made me feel worse for about 6 months and then theyd want to do another one... I even went blind for a short while after one of them when I was younger.

Kim, I really hope you can find some relief comng out of work and finding some stress relief, I find I have to do something in order to not focus on the pain, otherwise it drives me mad!

Let me know how you get on with Yoga because I struggle bending down for a period of time and so would be interested to hear if its ok?

I'm tired all the time and Ive heard from a few people that loosing some weight could help, but I struggle to do a lot of exercise so maybe walking would be a good start.

Please do keep me posted on how you both get on, I send my most heartfelt wishes to you both as I know how hard it is living with this

Hope u go on ol with Lumber Puncture. Although they want you to lay down in hospital for a few hours after, our experinece and speaking to others is that you need to lay down at home for 4 days and the body adjusts better. Certainly suggest the pill to your neurologist, if they mentioned that and pregnancy to us it seems hormones could be a trigger. Hope you go on ok. (mum and daughter)

Yes IIH can go into remission but then it can come back worse or the same as before 

Yes, 10 years later out of nowhere and much much worse than before

Yes iih can remain dormant for a while and then play up, sorry hun, hope you get or got it sorted good luck x