PLEASE FORGIVE ME, THIS IS A RANT... I haven't really posted anything other than my inital post when I first logged on, but I do read the post and try to keep up. Today I really need help in understanding this illness, disease, whatever. I saw my neuro-ophthalmologist on Monday. I told him that I was still having headaches that are stabbing like an spike or ice pick going through my head from back to front usually on the right side with occasional ringing/weird sounds in my ears. He did a visual field test and looked into my eyes and said that I didn't have papliedema and my visual field test came out normal so I am fine. I told him how my head hurts and how I have so much pressuire in my head that at times I can't bear it. At times I can't lay down (pressure/pain) or put my head in my hands (pressure/pain), I can't look down or up to long (pressure/pain) or turn my head too quickly (preassure/pain). He stated that it was just either a migraine or "headach syndrome" Huh??? Because I'm not going blind I don't have IIH. I'm just a crazy person seeking attention and can't accept that I have migraines.(mind you light has never been a problem when my head hurts from pressure/pain)

Why can't someone understand what I am going through?????????????? help me please!!!!!!!!!!

You could be experiencing what is called an Ice pick headache. Which ]are short, stabbing, extremely intense headaches that can terrifying. Generally they only last between five and 30 seconds. However, they come out of nowhere, and can strike anywhere on your head. It literally feels as if an ice pick is being stuck into your head, and then it disappears. The pain can also seem to occur in or behind the ear. The official name for them is "primary stabbing headache.

Does your headache sound like this? Here is the link to the National Headache Foundation which I hope you will find very helpful.

Penny, you need to keep looking and find a doctor who will listen to you, will be sympathetic and will fight with you to get you better. I have a Neurologist, who happens to have MAV.............she understands what it's like to have headaches and dizziness. She has questioned my headaches but only to get a better, clearer idea of just what causes my headaches. This is the type of doc that you need. Please, stay proactive, keep fighting and find a doctor who will help you.

I would go to the neurologist and ask for another LP to confirm that your ICP is still elevated. this sounds like IIHWOP. that's what I have, and many others also. you don't have to have papilledema to have IIH. it is just as miserable. print out some papers from pubmed on IIHWOP to bring with you in case the neuro is as clueless as your neuro-ophth.

You are definitely not alone!!! I honestly think doctors pull out the migraine, chronic headache, headache syndrome type terms because they have no idea what's happening. If you've been diagnosed w/ IIH, then it's at least a good sign that your visual fields and optic nerves are normal..it doesn't mean that you don't have IIH though.

Unfortunately, we do have a predisposition to other headaches because of the IIH, so you can have more than one type. Our symptoms also can change over time, so it's just more trial and error treatments. I would encourage you to keep a symptom log to see if any patterns show up. If you can include food, exercise, meds and sleep patterns, it may also give you an idea of what may be triggering or helping your headaches. I know it's a lot and a huge pain some days, but it will also give your doctors more info. There's an example of one in Useful Guides and Print Outs section.

I hope you find some relief soon..hang in there!!!
Julie

I wish to truly thank all of you for replying to my post. You all made me cry a littlle; it's just so good to converse with someone that understands without blowing me off. Wylee I am seeking a second opinion from a neurologist and neuro-opthalmologist. Heidi I will utilize the link you suggested to pinpoint the my headache. Sophiasmom I am researching IIHWOP to see if I fit in there somewhere. And Medmisfit I will start keeping a log. Hopefully this may start to make sense. I am just tryong not to lose my mind or give up and slit my wrists. I am so tired of just not being taken seriously or understood.I ask my doctors if you confirmed the disease with two lumbar punctures, why don't you beleive me now?? Do I have to loose my sight before anyone in the medical field believes me? I know my body better than you do; why don't they listen to me as I listen to my body?

This is one of the things that we as a Foundation are going to fight to change. Doctors should realise that when patients are complaining of particular symptoms, that they could be indicative of IIH, and then investigate and treat accordingly. In this day and age of medicine, science and the internet, surely Doctors must be as aware of the symptomology for IIH, as they are for other illnesses.

I'm glad you're getting second opinions. It's a very frustrating process that I'm sure most of us have experienced. Just keep looking until you find someone that hears you!

sorry this has taken me a while : ) i am so sorry that drs are so confusing. I had visual disturbances one week that they all seems concerned with, when i saw another opto she thought I was fine that i didnt even have IIH which was chrushing to me i had to walk out... on the 6th i have my VP shunt placed. Becuase of her statement I had to prove it by a 3 day hospiatal stay and a bolt test. I still have IIH but my eyes have been unpredictable. Follow your heart, If it doesnt seem right, keep asking and ask to see someone else if you hit a wall with somoeone. Its the only hope to getting better.... people really dont understand how horrible you feel, how hard it is to keep saying the same things over and over to get help.