Which advice would you give to someone who has just been diagnosed with Intracranial Hypertension?

Do not read about it on google. It will make you think you are dying

Lean on a strong support group who understands the condition. Family and friends should do the same so they can understand how best to support the sufferer

Breathe. It's not the end of the world. It sucks sure. You're not going to be down forever. Breathe. You don't have to accept the first dr. You can seek second options. Look at online forums. Ask questions. Finding a Dr who sees you as a person and not a paycheck or a disease #.

If you have just been diagnosed with IIH then the main thing is don't worry too much. It's a horrible condition and as a fellow IIH-er, I completely understand how you are feeling but there are ways to live a good life and to be happy even with IIH.

I was diagnosed 6 months ago so it's still kind of new.

You are not alone, there are so many people that you don't know who are experiencing the exact same thing. It's okay to rant and be angry, it's okay to cry. It's okay to have good days and bad days. It's okay to have a day in bed. It's okay to cancel dinner that day. It's okay to have a full nights sleep and still have to have a nap late afternoon. People cannot expect you to be happy 24/7 with this condition as it takes the life out of you.

But please be happy, please make the most out of your life. Please continue to be kind. You are a wonderful person and you are going to fight this and come out on top.

Support groups and chats like these really do help. To read a post where someone is feeling the exact same thing can sometimes be a weight lifted.

You are an amazing person who's been dealt a horrible set of cards but only because you are strong enough to handle this. Please reach out to people because it helps so much.

Take it slow . Don't overwhelm yourself with info on the internet. Every person is different and unfortunately there is no guidebook that works for everyone. Some benefit from medicines ( diamox, lasix, topamax) others get therapeutic spinal taps scheduled to relieve the pressure. For me I did not get true relief until after my vp shunt, but it is still not a cure all and whole new thing your body has to adjust to ( and can also bring its own problems ) Just take it one day at a time

This is not the end of the world. It may feel as though it is but it truly, truly isn't. This condition is manageable, treatable and sufferers are able to live a full, happy and satisfying life. There are many support groups and charities available for sufferers and I encourage you to reach out to as many of them as possible. They have been an invaluable resource to me and I have made some lifelong friends through them. Please do not feel alone and please do not worry or stress yourself out. This will pass.

Go to the internet and join a support group.
Read as much as you can about the condition. Educate yourself.
Ask as many questions as you want to your doctor or treating physician.

Don't get overwhelmed as there will be tons of information to learn, tons of doctors who will tell you that you are crazy before you find one who will try to help you and tons of people belittling just how much you suffer on a daily basis.

Don't give up. Know that there are people just like me who are fighting for every minute we breathe just to be able to smile and endure the next minute.

Be proactive! There's no cure her but you can manage your symptoms and high pressure levels. Stay connected with all of your doctors!

Be your own advocate. Get copies of all your medical records. Don't get overwhelmed. Breathe. Join a support group.

Hang in there. You're not alone.

Hang in there! It isn't the end of the world but life as you know it will change. It is going to be okay. Listen to your body!

At first it was quite scary and I researched it. But go on the websites they are very helpful. You are not alone. Through Facebook they chat and answer questions. Because it is very very horrible at first.

Do your research and know your body. Also never be afraid to stand up for what you want with your doctors. Doing those things will help you with this process and in choosing a treatment plan for you

You will have your bad days and good. As someone who has battled this for 17 years and acquired it from an allergic reaction to an antibiotic I took in high school, it really is about the mindset you have with dealing with it. You are not alone. I've been down the drug route, the surgery route and the natural path route. If you have the desire to lead a better life you will. No two people will have the same experience but you will find someone that understands the struggles and offers different ideas to combat this. Don't be afraid to say no to doctors and seek different medical opinions. You have to be your own advocate. We are strong people who live daily with a painful, debilitating condition that makes us stronger than the average

Look for as much information as you can find groups with others who have the condition and know your not alone

take each day at a time. find which meds work for you personally

Your not alone, listen to other stories to learn. don't be afraid the same things will happen to you. everyone is different. LP is a picture of your intracranial pressure of one moment in time. research an be your own advocate,
be sure to let all the doctors know your meds an med history as well as current symptoms. (even those you may think are not related.

Don't overexert yourself, it's not your fault. I would have stressed less.

Find out as much as you can about your own condition. Record everything. Ask questions. Don't take no for an answer. If you're not happy, keep trying. Everyone's journey is different. You are the only one who knows your body and is living with your pain. Trust yourself and your gut instinct. Be your own advocate.

Don't read all the negative stories, there are positive ones as wel