Idiopathic Intracranial Hypertension Group

I am in an excruciating amount of pain from what I have finally been diagnosed with after dealing with symptoms that have worsened rapidly over a 4 month period! The doctor told me that my opening pressure was 26.5 I was told this over the phone because my next apt was not for another month. I have been put on 150mg of topamax and was given maxalt for the "migraines" and tramadol both of which do not touch it a bit! I am very frustrated I have gotten so bad that I have to leave the room when my kids start playing around due to the noise. I cant leave the house without sunglasses and I can't drive because I have alot of confusion and blackouts!

Hello truely puzzled, and welcome to the forum.

Did your docs give you a script for Diamox? That is commonly used to help reduce the amount of spinal fluid in your system. The diuretic furosemide (lasix) is also. That is usually the first line of defense. It is my understanding that the Topamax is usually used as a secondary med. And, we don't usually have "migraines", we have high (or low) CSF pressure headaches.

Tramadol is contraindicated with IIH. It can increase pressure. Did you see my thread on using the Advil/Tylenol combo? Might be worth a try.

Are the blackouts you are having fainting spells or problems with your vision?

Nope, I still have not seen him. By secondary do you mean with the others? I told him I was not having migraines yet he seemed to brush my words aside.

I did see your warning on tramadol. I have since quit taking it. As well as the the advil/tylenol combo which I do use sometimes but I am so sick to my stomach all the time I hate adding more to aggravate it.

I am not sure? I am very dizzy all the time. I cant do stairs without nearly passing out at the top. Not a pretty sight as I'm told by my 15 yr old daughter! In the last few days the left side of my face has become tender to the touch. It started with my ears popping then a stabbing pain in the left ear followed by a stabbing pain above my ear in the skull. It feels like it wraps around my entire skull all the way to the base and its starting to get worse day by day?

I am wondering how you are doing now, truly puzzled. Feeling any better??

Still the same but I was finally given a referral to the hospital I wanted to be seen at. I go this week to see my current neuro he wants to try iv meds for migraines? I still am puzzled by this? I have constant head pain. With this newer onset of tenderness of the left side which seems to be also feeling numb if that makes any sense at all? The pain at the base of my skull I feel it pulling from my eye is that normal?

You may need to really push the migraine issue. It is my understanding that a migraine headache is much different than a IIH headache. In fact, a friend of mine does get migraines, for which she takes maxalt, but also gets IIH headaches, for which she takes Diamox. If your doc won't listen to you, can you fire him? Can you see someone else? Sometimes it takes some digging to find anyone with experience dealing with IIH. But it can be so worth it! It would tick me off to have to see someone who thinks they can tell me how I feel. Ask for a lp drain test to see if that would make your headaches and other symptoms go away! Have you been checked for papilledema yet? Have you seen an ENT or Neurotologist for your head/ear pain? Just some ideas for you.

I am going to discuss being put on diamox with him. I do have insurance and can and will change my doctor if he refuses to listen to me. I was checked once for papilledema they did not see any but they did see spiralettes at the ends of the blood vessels. Which I was told is signs of pressure. I have an appt scheduled with an ENT to check the head/ear pain next week. Have you ever heard of the pain being more one sided?

Sorry I'm late to the conversation, but welcome to our site.

The pain you are having sounds like a sinus infection. Before I was diagnosed and placed on Diamox, I used to get sinus infections almost every 6 weeks. I'm convinced it was CSF building up in my sinus cavities.

Once I was on Diamox for a couple of months, the infections stopped. In 9 years, I've only had 1 since.

I too just have pain mainly on one side of my head, the right.

I am now on diamox and lasiks. This is week two, Still no change. The Ent told me I have labrynthitis. I am still at a loss for the ear pain? Its like the worst ear infection in the world! I cant be around noise, fan's (I sleep with one on) and forget a blustery day or car ride with windows open! They are sending me to another specialist that can test the amount of pressure in my ear? As for my pain control I was given 8 fiorocet a month by my neuro! Oh and some indomethacine which is hard to take as well because I am so nauseous! He did refer me to a neurosurgeoun finally.

It can take awhile for the meds to kick in and start to help, and even then, they just help manage the pressure.

Neuros don't really like to prescribe pain meds too often, they typically will refer you back to an MD or a pain specialist, at least that is what I've found. My MD manages it for me, while the neuro manages the main IH meds.