Just want to talk

Hello, everyone!

The past few weeks have been... unusual? I guess things aren't going as I'd expet theem to go. I've done all the tests I needed before the next neuro appointment. An ophtlmologist diagnosed me with increased intracranial pressure. She explained, there is a good bloodflow to my eyes, but it's struggling getting out. She said, the Chiari is a very believable cause. Hearing those words made my day. haha. The diagnosis isn't anything anyone should ever want, but it's good in a way that explains the pressure I feel in my head, behind eyes, in nose, the pulsating feeling and I want to say it probably is the reason for my ears being so extremely sensitive to noise and the constant ringing. I'm curious if it explains the pulsating feeling in body. Ofcourse, I did a research on increased intracranial pressure, but didn't get very far. Found the usual- many different possible causes. My eeg results were late(as it turned out, someone had forgotten to write the report), so the only way I could calm my nerves, was to try and find some info on anything.

What caused even more stress, It looks like my symptoms are getting worse. I don't know for how long now, because everything is a blur. I'll make an estimate of a month. I'm so extremely tred! My hands and arms are getting stiffer and I cant stand the sound in my neck when I move my head. It's the most disturbing when I'm turning on the other side when sleeping.

I've watched so many tv shows, that I'm finding it hard to find new ones to watch. I go through them so fast, I try not to go in the ones that have 4 seasons or less. haha So I play a lot of video games, but my computer isn't very good, so I don't have much to choose from there either.

Since my joining this group, due to my symptoms getting to the point I couldn't work anymore, I found free online learning opportunities and thought I'd learn programming on my own pace and one day would work again. I don't even have the energy for that kind of learning anymore.

It's too hard to come here and read your discussions. I could read some, but I couldn't remember what I read. If I cant remenber what I read, it would be close to impossible to leave comments.

If I never get better, It's going to be extremely boring! So I hope there is something doctors can do about this. Otherwise I'll just have to find a way to move to a place where it's summer all year and I can lay under a palm tree for a half day, other half spending floating around in a warm, crystal clear water fro the rest of my life. And squeeze in some meals between the floating and the lying. :) mmm... Galapagos! I dream of visiting Galapagos! It's the most amazing place on our Earth!

I know how tough it is for you guys in the U.S. to get to an appointment that the insurance covers and I honestly can't undernatand it. I guess the health care indusrty is a huge money making machine, and it's very sad. Luckily for me, it's super easy to get an appointment with my neuro. I don't have to wait more than a few days! The normal waiting would be around a month in Latvia. Our insurances are different from yours too. I don't have to wait and see, if the insurance will cover the specific doctor- it covers all of them.


Hi Fugu, with the severity of your symptoms, why hasn’t your NS indicated surgery for you?? Or have you already had it?? I hope you find some relief very very soon! Xoxo

I will reply some more a bit later but in the meantime wanted you to know I've seen your post. ((Stay strong))

Hi, Beaches! For years my symptoms wern't as bad. I was first diagnosed when I was in highschool. All that the doctor said to me then was that there was nothing that could be done. I didn't even know the name Chiari then. So I lived with it until I got worse in last summer. In the autumn I saw the first neurologist in 7 years and she was very rude and said, I most likely had depression. I didn't go back to her, waited to get insurance and am only now being rediagnosed.

Thanks, Beaches, thanks, Jules! :)

Oh wow! So sorry you went through that! I know how it feels to be told “you are fine, it’s depression/anxiety”… I was told that for several years as well before they found mine last August. I hope you get some good relief soon & answers!


Hi Fugu

I am sorry to read that you are having such difficulties. I found this site a few months before surgery and was so cognitively wiped out that I could not post and only read a bit before I stopped because it was to difficult. I hope that you find solutions soon and can fill your days with peace, now and later. May you receive support and understanding fro those around you. I will be sending you prayers of tropical, palm studded beaches.

Thanks, gabby, for the nice words! :)