Anyone have this? head pressure, swooshing in ears,pain behind ear, stabbing pains?

Gosh...Im reading so many of the symptoms posted and many of the them sound like me a little over a year ago. I can truly say that I've never suffered from Headaches, but then last Jan. I started getting more and more sinus problems and weird feeling headachez and then the whooshing sound started in the ears...i saw 2 neurologists who both said they were cluster migraine headaches. Then, a few months later I had my standard eye appt. (I wear glasses). She said I had to see a opthamologist because my optic nerves were very swollen. I saw a neuro-opthamologist who had me do a MRI and a spinal tap (didn't hurt) then on my follow up appt. I was diagnosed with Pseudotumor cerebri. I had pappilidema (swollen optic nerves) my right blind spit had grown larger and My spinal pressure from my spinal tap was 38. I don't know why doctors seem to dismiss this disease so much....I believe so many migraine sufferers probably have this but are not being daignosed correctly. Once I was diagnosed I was weaned onto diamox which was taken all the way up to 1,000 mg a day. Yes, this med caused tingly fingers, feet and other body parts. But after 1 year, my palpillidema was reduced and my blind spot shrunck dramatically (I did vision field test) every month. And I was taken off the Diamox to see how I would do. Well, unfortunately, I've only been off for.1 week and im already experiencing sinus pressure and whooshng sound in ears. I am praying and crossing my.finger that.it is a true.sinus issue and the.season and not my spinal fluid climbing back up. I really don't mind taking the diamox but have been told that after prolonged use it can cause kidney stones....ouch! I am going to wait a few weeks, if this pressure doesn't go away I will contact mg doc.

PLEASE.....if you have experienced any of these symptoms, demand a spinal tap...it saved my mentality and most importantly my precious eyesight!!! I hope this post has helped those of you who have some or all of the symptoms. God bless!

I am also looking for some answers. For a full year now I have been suffering with extreme pressure in my head. It feels like my skull is crushing down onto my neck. Sometimes it feels like I have a band wrapped around my head (like right now). This is definitely accompanied with migraine headaches. I was in and out of the emergency department for a couple of months on January and february of 2011 when I was finally referred to a neurologist. He did two spinals (lp) and determined that I had increased intracranial pressure or specifically idiopathic intracranial hypertension. I was. Put on diamox. When my pressure was re- tested in September where the results were normal. He took me off of the diamox at this point and put me on topamax (a migraine medication). Unfortunately, I didn't have much relief with this medication and ended up back in the emergency in January of 2012. The er doctor contacted my neurologist who basically said that he wasn't convinced of my diagnosis of iih, he wasn't coming to see me and for the er docs to treat me with migraine medications. After several doses of morphine, I was finally discharged. My husband and I made an executive decision after leaving messages with my neurologist (who failed to call me back). We decided my best bet was to go back on the diamox. I dont believe that this is the right medication for me to be on as I feel like nothing is better than taking a drug that isn't all that effective, especially when my neurologist isn't aware of it. I take a lot of analgesic on a day basis, which is not good and is certainly not the way I wish to live my life. Any advice would be greatly appreciated. I feel like every symptom that has been described on this discussion is what I have been living for a year. All I want is dome quality of life back. My poor 5 year old and my husband have to watch their lived one be in constant pain, and that's not ok.

Hello everyone

I was diagnosed with intracranial hypertension as we call it in the UK, the same as pseudotumor cerebri. I was diagnosed in 2008.Firstly this is classed as one of the rare diseases out there and it can often be very difficult to get a diagnosis and the treatment and care that follow can often be inadequate as not that much is known about IH as we abbreviate it here.

There are many symptoms that are associated with it, the most common being the severe headaches, whooshing in the ears and papillademma, a swelling of the optic nerves which can lead to vision loss if left untreated.

I had always had headaches but I didn't pay them that much attention or feel the need to go to the drs.I put it down to the stresses of every day life.I began getting this crazy whooshing sound in my eyes, which went all day and along with this my eyes were burning, very sore and just didn't feel 'normal'.

I ended up being admitted to hospital as an emergency and after ruling out a brain tumor they told me that it was more than likely that I had intracranial hypertension.I had a lumbar puncture to confirm diagnosis and with an opening pressure of 38, which is classed as high, I was diagnosed.My left eye was in a bad way.I had severe papilademma and I had lost some vision in that eye.As far as the vision that I had already lost, I was told that it was too late to save it.The pressure had been building up for so long, unbeknown to me that the veins in the back of my eye had 'died'.All they could do now was try and manage my ih and stop it from getting any worse.

I have been on diamox which is more often than not the standard treatment for ih.I have been on this since diagnosis and so far it has helped my eyes and helped me avoid surgery.

I actually run a very active support group on FB, with members that have ih themselves as well as many Moms to children who have ih.If any of you are interested please let me know.There is also a wonderful site http://www.ihrfoundation.org/ which has lots of info.