I've had type 1 diabetes since I was 9 years old. No connection to IIH and boy, is it so much easier to control than IIH is!

Hi. I have Trigeminal Neuralgia, which I believe may have developed due to the many years of high pressure. The trigeminal nerve is located in your brain and affects various portions of your face. Can cause intense shocking pain if the nerve is constricted in any way, but controlled by medication (Tegretol). For some people medication does not work and they must have surgery.

Geez, two neurological issues. If I had to choose, I'd take TN over IH any day!

April -
I have been wondering the same questions...I have bladder kidney issues they don't say they are related but I disagree. I'll exclaim befell... I think the reason dimox didn't work for me is because it didn't make me Pee. I really had no change in the amount I went to the bathroom but swelled up like mad. Can't wait to hear what everyone says. So in my eyes they are related but I can't find a " house" Dr.
Nicole

Dr. House, love the show. I agree my urination has not increased at all!!! hummm, guess i should have thought of that and told my neuro.

YES... wouldn't that be nice if we all had a team of docs round the clock ???

Yes you are right there are a lot of people with additional issues. I for one has thyroid issues, insulin problems, and yeah I take enough meds for my husband to call me a walking pharmacy. Funny...
As far as the neck pain goes - my doctor says that when you have headaches it causes your neck muscles to tighten up which then aggravates your headaches and well the cycle just keeps repeating itself. So he gave me some trigger shot injections - which didn't help my heaches at all. Maybe they work for some people but I didn't get any relief from them.
:) Mandy

I have felt, for a long time, like I have something else going on and the IIH is actually secondary but it is easy to call it primary and not look any further. I think, some day, they will find that it is always secondary. I think this forum is so helpful because this is the way to find out...what it the one thing we all have in common? I don't think it is weight or age or gender...it doesn't fit all of us and it's way to simple. I have often wondered how to find a (nicer) Dr. House!

colleen i agree, i feel there is something that has caused this iih. I have an appointment early next month and i am going to ask to have some tests done to find out if there is anything else going on with me.

I wish you ladies all the best in finding out if there is something else causing your IH. I know too I looked and worked with doctors for quite some time. They took me off birth control. Switched up a lot of meds - did a lot of things. I took me awhile to find a doctor who was willing to do these things. Not all doctors believe that for ex. that IH may be caused by birth control. (1st neurologist said it had nothing to do with it - 3rd said it does...who's right? I am off of beacuse I'm not taking chances any more) I don't know that mine was but somehow I got blood clots in my brain causing my secondary IH.
This past year I went to see a blood specialist in Ohio (8 hr drive) continuing my search for why I got these blood clots - I just wanted to be sure like a lot of IH patients that this could never happen again or that I could at least prevent it. My test results came back with an inheritated blood clotting disorder which raised some red flags as to why I may have also gotten those blood clots in my transverse sinuses.
I tell you this beacuse - Don't give up looking and searching. If you have to drive 8 hours. Go out of your way. If one doctor does a round of tests and they come back one way it doesn't hurt to get a second opinon. I have. When you have serious health problems it needs to be taken seriously. I know not all of you had the same problems I did but if I wouldn't have gotten a third opinion from another doctor the second neurologist would have given me a shunt and I would have never known that I had collapsed veins in my brain and really needed stents. Getting the stents was also nerve wracking as very few people have them but I had nothing else to lose - sometimes you just have to take a chance.
So yes I believe that for alot of people it can be secondary IH. For me it was. Its hard to say for everyone. But make sure your doctors are checking everything. Never give up the fight - a lot of times I felt so defeated and wanted to. Just recently I have wanted to about my headaches but I know I can't. Some days it just gets to be too much. But thats why we have each other. We all understand one another.
:)
Mandy

I have Arnold chiari malformation and the drs think my ih is a result of all the brain surgeries i've had for the chiari. Even if the surgeries didn't cause the ih it is related on the ihfoundation website if u look at related conditions chiari is one of them.
Molly

I just re-read my post and noticed my typos and grammar error. Oops. Good thing I'm not an English teacher anymore! I'm so embarrassed! :)

I had constant stiff neck, and loads of pain..Still have not received an answer as to why.

I also believe, my IH is secondary, but because I'm obese and a woman of childbearing age, of course, doctors assume it is due to that.

But I've been overweight most of my adult life, and my problems really only began almost 2 years ago. Before that, I was pretty healthy, could exercise, work long shifts, etc. even with the extra weight.

From doctor to doctor, I went, while each just kept adding more tests, a new diagnosis and more medication...So frustrating..

I too, wish for a brilliant, albeit psychopath Dr. House to solve me...because I'm just not buying into this....that I'm falling apart in all my body systems, that I have multiple, chronic, uncurable disorders and disease...because if I do, I lose hope...And somedays, I am hopeless.

I like this topic......House, I say that all the time. Where is he when I need him. The good thing is that I obsess over my conditions to the point of knowing more than my doctors do. Sometimes they are amazed and other times they hate me for it. I tell ya this much, I won't give up, I used to be normal! My family thinks I have given up since I went the social security route. Not my case as I tell em all. I have a 2 year plan. Lose the weight, get physically fit again, and I will see how that pans out. I so look forward going back to work.
I have Chiari Malformation, POTS, IIH, and paps. How special are we all. I am trying to get this weight off, and I will! I have always been bigger than the other girls, but it was a good bigger, like Marilyn Monroe, sexy, curvy......now I am still sexy don't get me wrong. I can turn heads any day of the week, it just seems my body type is the kind where now I am fatter, the fat is accumulating on my upper body, ie, arms, back, tummy. I think I will ask that question of you ladies, what is your body type, apple, or pear? Seems to me the apples are afflicted with IIH. Just a thought.
Oh April, my neck, upper back between my shoulder blades hurt all the time. My neck sound like a pack of firecrackers all the time, I would have said popcorn but that does not accuratly describe what it feels and sounds like.

Mary

For those of you with Chiari Malformation, did you know you had it before your dx of IIH of was it discovered after your dx with IIH?

for me the chiari was diagnosed first then after three surgeries and not getting better they did a spinal tap to look for ih, and the rest is history lol
Molly