Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I lied to my neurologist yesterday and I am feeling bad about it. As some of you may recall last week I went back to him because the ear whooshing had gotten really intense and constant. He suspected my pressure was up and scheduled me for an LP for today and upped my diamox. He had me alternate between 1000mg one day and 500 mg the next which would put me close to 750, but because I do better on the sequel capsules this was the only way to do it. He said if the whooshing went away, i could cancel the LP. Well, it did subside a lot, and now it's just very faint and muffled. So, I feel like the medicine is helping. But, it is still there and my ears still feel like i have water in them. When he called yesterday, I lied and said it had gone away. I know that was wrong and only a disservice to myself, but I'm really afraid. I'm scared that he will do the LP and my pressure will be high and that will mean that the medicine is not working. I was too chicken to face that. If you'll recall, he is the one who said he would refer me to a NS to talk shunt if my pressure was still high. And, I'm just not ready to go down that road yet.
Also, I feel like we need to give the new dosage a little more time to work than just a week. Right?
I feel like a giant baby right now. I know I should put my big girl panties on and get on with it, but I'm still trying to come to terms with all of this.
Also, I feel like we need to give the new dosage a little more time to work than just a week. Right?
I feel like a giant baby right now. I know I should put my big girl panties on and get on with it, but I'm still trying to come to terms with all of this.
Hope i helped
MandyRee
You're not a baby.. you're logical!!!
I would have lied too. If I remember correctly, you don't have any headaches to speak of, and your vision is 20/20? I started out somewhat similar. Well, no headaches. My vision blacked completely out in my left eye, but that was easily corrected. Thank God! I've never had anyone mention a shunt to me, and if they do.. I will find a new doctor. I understand that some people need a shunt to save their vision. Some have headaches so severe they can't tolerate getting out of bed. A shunt is great for people that truly need one. I personally would not even consider a shunt due to whooshing in my ears.
I have never been completely free of all IIH symptoms. At least not for an extended period of time. Let's put it this way.. my vision gets funky at times. I get the occasional headache (It's about a 2), and sometimes... I am somewhat dazed and confused. lol. With that said... none of this is frequent enough, or bad enough for me to consider a shunt.
Honestly, millions of people have these very same symptoms from being exhausted. Or from seasonal allergies. The list goes on and on.
When my NO told me to stop taking diamox, I said "no", because I was afraid of getting worse and needing a shunt. He thought I was crazy to jump to such a conclusion. He said that would be a last resort. They have other meds to try, or simply go back on the diamox. Even if my eyes were to fail, they would try ONSF first.
I don't know.. but if I am remembering your symptoms correctly.. I don't know why he would even mention a shunt.
Betty
I had what I refer to as "tight head" for a year prior to being diagnosed. It was there all the time. It wasn't painful, just noticeable.
I was on diamox for 3 months before that tightness in my head went away. I think my paps were cleared up in about the same amount of time. 3 to 4 months.
It takes time... I consider myself lucky that it only took 3 to 4 months.
Good luck with your Doc.
Betty