Hello my name is Shelley, I am 31 years old and was diagnosed in April of 2011. I have been happily married to my high school sweetheart for 11 years. We have been unable to have children thus far (due to PCOS). I have suffered my entire life with headaches and migraines, thought to be from stress and high blood pressure. I have been on medication daily for the past 10 years to help keep that under control. I got a really bad case of the Flu in November 2010 and never felt better after that. I went to my doctor several times thru December, January, and February complaining of headaches, neck pain, eye pressure, and an extreme feeling of tiredness all the time. At first my Doctor said I was still trying to recover from the flu, then she said maybe my allergy medicine had stopped working as well and she changed those, then she said it is probably tension I bet you are just stressed at your job and put me on muscel relaxers. Nothing worked and I was getting frustrated and just wanted to sleep and keep my head still all the time. My husband then suggested getting my eyes checked to see if it was my vision bothering me?...So I did and my eye doctor said “ Have you been having heads and can you tell me about them?”. So I told him what was going on, and I said “you are probably going to think I am crazy for saying this but I also here an Ocean sound in my ears and get dizzy spells like I am going to pass out”. He told me I was not crazy and that my Occipital never was very swollen and that from the pictures of the back of my eyes he could tell there was a lot of fluid pressure in my head. The next thing I know two days later I was at the neurologist office and getting a ton of testing, blood work, CT scans and MRI’s, then finally a lumbar puncher. My pressure level was 35 and I was then told I have Pseudotumor Cerebri / Idiopathic Intracranial Hypertension. My doctor didn’t seem to offer a ton of information on it to me, so a lot I find out on the internet, I did go and see my OBGyn just recently and she told me the most about it and printed a bunch of medical journal info for me. Now as I look back and see the symptoms so much makes senses to me, for so long I just thought that I was crazy or I would think/ blame everything on my weight. I just feel almost thankful that I now know what it is and that I can put a plan in place. I am on Acetazolamide 500 mg 2 X a day, Toprol 150 Mg 1X a day and I am working hard on weight loss I am down 50 pounds in three months. I still have my bad and sometimes very days and get some pretty ugly side effects from the meds, but my goal is that with weight loss and medicine management this year I can get off the Acetazolamide and start back to work on having a baby. I am so happy to find a place here, to hear other stories and help each other by sharing what we have learned. My family and friends are very supportive to me, but they just really don’t understand, I think they just think it is another headache. I am feeling positive today, and thankful to have found this site!

Shelley

Hi Shelley, and welcome to the forum. You have indeed found the right place. There is a ton of info here and others who "have been there and done that"!! Me included. My case is a little different than most, but I am searching for that cure too. Well, maybe not a complete cure, but to feel "normal" again would be wonderful.
You are very fortunate to have found a team of medical professionals to oversee your case. Keep track of how you are feeling, try to learn possible "triggers" that make you feel worse, and do keep a watchful eye on your progress. We will try to help with any questions you may have, but your doctors need to be your number source of decisions.

Best wishes for continue healing and being able to get started on having that family of your own.

Hi Shelley a very warm welcome to the group, we're so glad you found us. I couldn't believe how very similar to my story yours was, I went a year thinking I was making more of "a headache" than what my doctor was telling me, and thought the whooshing was perhaps my imagination because my doctor more or less told me it was.

At least now you seem to be on the right track and you have a determined spirit and positive attitude which is half the battle. Wylee has given you very sound advice and we also have booklets that you may find helpful too.

We are always here for you, so you now know you are not alone and you can also vent when you want and we will always understand.

Heidi

Hello and for the warm welcomes!!

Thanks for the advise and I do feel very blessed to be in a great location with lots of Great doctors, three major medical univeristy hospitals, and reseach going on all around me.

I will like to find out about some of the booklets and info on here, and maybe even information on helping my family (parents and siblings) understand what I am going thru.

Shelley

Hi Shelley! Thanks for sharing your story ... I can relate to a lot of your IIH symptoms, as well as the PCOS/infertility journey as well. Been there! I'm new here too. Good to "meet" you!