I have a 9 yr old son diagnosed last yr with IH. Hes forever having severe headaches, back pain, leg pain, ear and jaw pain. I would love to talk to other moms that are dealing with the same situations!!! And especially how you are dealing more with all the missed school and the problems that arise with that!!!

Also we recently flew to fl and since that time hes been having a fit with his pressures!!! Does flying incease symptoms??? Anyone else experice this???

He also seems to be more sensitive to barometric pressures. WHen storms are coming he gets physically sick and the headaches increase in duration and intensity...Would love to know how to help him better!!!

Thanks!

Natesmom -are you from Mass? I'm a teacher I can help you with some key things you can put in place for school with your son? Let me know

Where in Mass? I am in New York but, right on the VT/MA border. I am pretty close :)

Hey Alto- I'm about 20 minutes south of Boston. Does your neuro specialize in IH? I'm starting to wonder how much my neuro really knows about this disease?

He doesn't. I am actually looking for a new neuro, I do like this doctor, he has a great bedside manner and is quite funny.
Does your doctor know a lot about it?

I see in your profile pic, your wedding. When was your wedding? Hubby and I will be married 5 years in November.

Looks like we're about 4 hours from each other, but that's pretty good considering this is a rare disease. :) Happy Friday!

4 hours isn't bad at all considering. I feel the same way about my neuro. He is such a nice guy, and he gets my sense of humor which I love. I can go into him and describe my symptoms and he never gives me that "what the hell are you talking about?" face. When I asked him how often he sees this he said very rarely, and some of the things I've mentioned to him, he doesn't seem to know anything about. For example when I have a bad headache the back of my neck kills, when I mentioned it to him, he didn't think it was related, but on here people seem to think it is? Who knows, I hate to leave someone nice and end up with someone who just thinks its a "headache".
I got married at the end of November....then I got sick in January! Talk about Luck! We are both teachers and had our honeymoon planned for this summer, but just canceled it because of my head. Sorry I sound like Debbie Downer.
How long ago were you diagnosed? What do they have you on for a treatment now?

I was just diagnosed a few weeks ago. I am on Diamox, 500mg 3x's a day. I am not sure what my doctor knows/doesn't know. I have a follow up with him in a week. I had to see him before this, they thought I might have had MS at one point.
It was January for me too, all of a sudden I had these headaches everyday and they couldn't find out why.
I get the thing with just getting married and getting diagnosed. We got married Nov. 2006 and April 2007 I got diagnosed with fibromyalgia. Though I have probably had it a long time.
I hope you have a headache free weekend. My mom is in town and she lives in New Brunswick, Canada...so it's been awhile since I've seen her :). Have a good one!

Hi, Nicole we live in RI, just outside prov.. We see a neuro here but we have been to boston for an 2nd opinion. Unfortunately, that didn't work out well.Would love to know if you have found any doc who feels confident they know how to treat PTC. Our neuro says my daughter is his worst case. Most other patients are better after a short period of time.

Hi Kelly,
I am seeing a neuro at Tufts Medical Center in Boston right now. He is very nice and very understanding, but I don't think this is his specialty. I see my nuero opthomologist at the same hospital and he is really good. I was actually diagnosed in Tufts ER after being sick for months with no explanation. I am going to see him next month so I'll ask him some questions.
Best of Luck,
Nicole