Don't be terrified....it is different for all of us. My first go around I only took Diamox for about a year and then lived relatively symptom free for ten years. Are you taking meds? Diamox and topamax both take time to get adjusted to...it will get better.
If you need to cry, cry. I think we all do. We have a great group here, with a lot of knowledge and support to help each other through the hard times. Hang in there!
And welcome to the group.
Jen

Thanks! Yes they have me on diamox 4x in the morning and 4x at night.. I'm dizzy like crazy an have neck pain in the bac..And nevermind if I ever have to cough!! Too much pain when i do..just horrible horrible horrible! I'm just dealing with alot right now! I just moved to northern California from Los Angeles due to a separation from my ex! Suppost to start a new life with me and my kids..this took place bac n sept..two months later I get sick with this..this Is suppostbto be the happiest time not the saddest ya kno lol

One thing I have learned in the 10years I have lived with this is that stress makes it go nuts. Life is hard enough without dealing with your head feeling like it is going to explode. All I can say is try not to stress over much. I know easier said than done but find someway to de-stress when you can. Good luck I hope you level out and can live a bit better.

Kris:

I was diagnosed almost 3 years ago and when I first started researching IIH I was like you scared and not at all sure what was going to happen to me in the future with this illness. I completely understand what you are going through and it is completely normal and natural to worry. But remember this... most of us in this support group are still searching for answers to help us control the symptoms of IIH.

We often have members of the group who move on because the treatment that they are receiving is working for them which is great. Everyone who is diagnosed with IIH has a completely different journey. Some of us respond quite well to the medications and go back to their lives without much trouble. Some of us struggle with the medications and have to look in to alternatives to help us cope with IIH, shunting being one of those alternatives. For some people with IIH the illness often goes into remission and they become symptom free.

I guess what I am saying will all of that is don't jump to conclusions to early. Try to calm your fears as much as you can because stress will only increase your symptoms. Take it one day at a time and If you haven't already read through some of the old discussion posts. I find that for me knowledge is power and the more I learn about IIH the less fearful I have become. Also check out the Intracranial Hypertension Research Foundation website : http://www.ihrfoundation.org/

Ashley

I thank u guys so very much! I never in my life herd of this illness b4 and thought I was the only person in the world with lol thank goodness there's others people like u guys that understand how I'm feeling and know what I'm going through..again thank u do very much !!

It might help to lower your dosage for now, and gradually work up to the full dose. 2000mg a day is a huge dose to start with...I started with one pill twice a day, then two twice a day, three, and finally four about a month into it. Something to mention to your doctor at least!

When I was told that my next step was a LP Shunt, it made me sick for days. What scared me was the whole idea of "what if". I had read that the LP shunts only had a 50 50 chance of working and they could make your life worse than before you had it. So at my next appointment with the NS.. I picked him to death with questions. He explained that I was a perfect canidate for the shunt and I should'nt have complications. My weight is within the healthy range( as by weight watchers charts). That was a big release of pressure from me. I still have the "what if" thoughts, but I am not sick over it. I have decided to take back control over my life and have started getting things in control. By training my lead on stepping up and taking over my manager postion while I am out. I have also insure that my extra bills (department stores) credit cards are all payed off. So, if and when that time comes and a shunt is necessary, I will have a little bit less stress on me and my family.
With that being said, I am scheduled for a lp on Tuesday, curious on what the opening pressure will be.
debi

@ jend..yea I thought that was way too much to be takin but he said that he was tryin to save my eyes cuz of the papiledema so I'm like save em!!! What ever it takes lol

Ashley..thanks Ash Definitely I will look into that web site,I'm feeling a whole lot better about this now but I sometimes have my little spurt of days lol

Maggie..thanks I hope things levels out for me too! And I'm sure it will!

Debs..I sure hope n pray ur opening pressure are within the normal limits! Hope everything turns out right for u and for all of us!

Thanks u guys! My Prayers are with each and everyone of u!

I am in the same boat!! my dx was on 10/26/10 and i must say i never ever in a million years thought this would be my life. Hang in there we will all get through these tough times together.

Hi Kris. Its ok. really. It is not as bad as you may think.
You are so new to all this and I think I would compare it to moving to a new country, where you dont know anyone, cant speak the language , and dont know what to do next.
As with everything in life, it will all fall into place but give yourself some time.
I am so glad you have found this site. It will be a a great support and help to you, in the coming weeks.

Something we tell all newbies, "Knowledge is Power!".
Learn all you can about IIH and how it effects you. We all have the same basic principles of IH but all react differently. You need to find what works for you, what makes you feel better etc. Dont worry, it will come together.

As for worrying about a shunt...slow down girl! plenty time to cross that bridge, if indeed you ever will. You might respond brilliantly to the meds!
Keep in mind, a lot of us here are in the minority, in that we are still looking for an answer. There are hundreds of IIHs out there, doing just fine. But take advantage of all our problems and learn form them!

Some thing we tell all the new people, ask questions! T here is no such thing as a silly or stupid question here. And we will do our best to answer. Now, calm , breathe deep, and start learning your new " language" ! Cath.