Woke up one day with a headache I couldn't explain. I couldn't comprehend. I thought I was going to die. I think a little part of me DID die that day. I haven't been the same since. Took 2 years and tons of doctors with different ideas for a correct diagnosis. Had the lp's done. Tried one, then another, then another. Went with the lp shunt since the taps would help in small spurts. The shunt seemed like the right choice. 4 months later, the headaches came back slowly. Now, 5 YEARS later, I am back a square 1. The pressure is unbearable. My eyes hurt so bad I want to scoop them out. My ears ring constantly, so loud I can barely hear what is going on around me. The pressure at the back of my skull feels like my head is just going to pop off. The swelling and numbness are making me crazy. The depression and loss of hope are weighing me down. I'm at my wits end. My husband is a great support. He and my daughter are what keep me going. I have to for them. How can I get my voice heard that I need some relief? The doctors aren't listening. They are blaming my stress and depression and lack of sleep. There is no way my headaches are that bad again. Really? Tell that to my body that is being wrecked every day with pain and swelling and numbness. My balance is so off, I fall all the time. I can barely see. I think it's time to find a new doctor. I could use a prayer and a .

A very warm welcome to the group, and I'm so glad you found us here. I am so sorry that you're having such a rough and frustrating time, and I understaqnd why you are feeling the way you do. When I had my first shunt which was an LP shunt, although it helped with the symptoms but it badly damaged the nerves in my back affecting my mobility. It took me 5 years and switching to a different Neurosurgeon before it was accepted the shunt was to blame.

It IS very upsetting, distressing and makes you angry when you know something is wrong and you can't get anyone to listen and investigate the problem. Have they considered the shunt is overdraining? LP shunts are well known to overdrain and that's why I'm surprised they haven't explored that further.

Of course you are going to be depressed, you're experiencing chronic pain on a daily basis who wouldn't be! I think it would be very prudent to find another doctor who has more experience and knowledge of IIH and who has treated it before. The IH Research Foundation offers resources for finding a doctor and it may be worth you checking out. Here is the link. Finding a doctor

We have helpful booklets on talking to your doctor and Neurosurgeon which included questions that you can put to them which you might like to have a look at. You will find them in our Useful Guides and Printouts section. You can read, download or print them off.

Keep us posted on how you get on and please make use of all our forums and information. We are always here to answer any questions and help you in any way we can.


Heidi

i am so sorry you are having a horrible time, trust us when we say, you are not alone! i am so happy to have this place to read the stories, and share when i feel the need too.... i pray that you find relief soon, and am happy you have a support system, i know at times it can feel like nobody gets it, or even cares, so it is a God send to have people that do. hang in there.

I'm so sorry your having such a rough time xx Heres a

I can jump on that bandwagon too...hope you find relief soon!!!

Hi,

I am sorry to hear it's gotten so bad. The way you are describing your symptoms is just how I feel right now, so I know what you are going through. My IIH has just returned with a vengeance and I am back in hospital tomorrow, but unlike you I have not had a shunt just LP and I found that to be a harrowing experience.

I hope you manage to find some relief, It really can take over your life when it's really bad so keep your chin-up and let's hope you get back to being you soon.

With a big from Jo xx

Hi just you, Your story really touched me, it was so simular to my own, the discription of the pain all the same.I was rushed into hospital over 11 years ago after going to the doctors so many times and being told the same as you. Then one day I was so bad I was rushed to hopsital , they thought I had a brain tummor too, but once tested iih was what it was, I was told not much they can do and learn to live with it.Being a strong willed woman I lost it and started screaming an shouting,lol I cant do this or that.lol In the end they made an appointment for me to see a nuero man.I have lost some sight in my right eye and have all the same as you.I was told that a shunt would not be a good idea as mine flucuates daily which it does,theres not a day that Im not in pain at some level, balance ,bur vision.I cant work Id be no good to anyone, which is so hard to except even after 11 years.Im happy go lucky which helps and my family and partner are wonderful, but its hard for them to really understand as I look normal and am always smiling.I find that if I do things alot slower and rest inbetween Im better, I now take timee to rest and relax it really helps.I must admit walking is a challenge lol I feel like Im there but not there like Ive been smoking something lolI have even had comments from people saying look at her shes had a few lol not nice really. Keep smiling and if ever you need a chat im here if you like to. yaryar :flower: :flower:

Hello Yaryar and welcome to the forum.

11 years is a long time to have to deal with daily bouts of IIH pain. I feel for you. It sounds as though you have become quite the warrior woman. Perhaps you can start a new thread where we can talk more about your journey with IIH. I am afraid this will become lost within these others' thread. What you have to share is very important to others who are following similar paths but many, many steps behind. Your experience and knowledge will benefit many others.
Can't wait to hear more about you.

Thanks,
Linda