My son, who was recently diagnosed, often states he feels like he is in a "haze". We have not yet seen a neurologist to give us further information. Is this a common feeling associated with chiara? Headaches are ehat caused us to get the mri. Thank you
Beeba, you explained my brain fog to a “T”. It’s exactly like a dream state and watching your life through goggles or a movie. If you, or anyone else, have been decompressed, has the brain fog improved?
Beeba I will hear anything and I have no blood pressure issues but the fog is what I tell everyone I feel like I live in my own bubble while everyone else lives outside of it and its a 24/7 job to participate outside of my bubble I have to concentrate harder to listen I have to make myself react sometimes like I’m supposed to react just to keep normalcy. My bubble is sometimes very thick and sometimes very thin that has been my best way to describe it
Beeba,
When I was at my last appt with the headache specialist she actually called some of my head pain "post traumatic brain injury." It may sound silly, but it felt so good to be validated! I feel the same as you in many ways, the surgery has done a great deal to help, but I am left with a different life than the one before Chiari. It was nice to have her understand and actually put a name on it. The brain fog/haze used to leave me with huge blank stares and they had gotten better for a little while. Now that the headaches are back with vengance, the fog has gotten much worse. I think sometimes it also has to do with my pain level. That's just me though.
Beeba,
I had felt great the first few days and now the pain is starting to come back. I did get a lot done though. I had a meltdown yesterday because I knew it was coming back and the frustration was just to much. It felt good to be mostly headache free for a few days and I don't want it to end. I know I should be grateful for the few good days, but it just stinks! I am just hoping the botox gets approved soon and hope it helps. I have been overwhelmed with joint pain and what feels like shooting pain in my bones. It feels like my joint are loose. I chalk it up to my muscles being weaker than before, but I feel like an old woman....I am 35. I see my NL on Wednesday. Hopefully he can shed some light on whats going on. My PCP suggested PT, but I want to wait till the botox is done. One good thing!!!....my BP has evened out and is normal for the time being. So, I am not feeling like I am going to fall over ALL THE TIME. Lol.
Keep us posted on how your appt goes!
Beeba said:
Doesn't sound crazy at all to me - I am driving 150 miles today in the snow for exactly that!! With what I have been doing lately I am so much better but when I tank is what I want him to validate. And let's face it - without a medical diagnosis it comes down to really crazy. And I don't think I am. As bad as this all gets I don't even feel depressed - frustrated beyond comprehension but not depressed so when someone says anxiety and depression I really want to freak out. And if I am soo badly depressed that it has caused such debilitating physical problems I would be in an institution. That ain't it. I have been depressed twice in my life once for 6 years when I kept having miscarriages and once when my whole house got covered in black soot and I had to move out and live in a one room hotel for a month. I knew it, I said it, and I recognized it. I don't know why any dr would think after all this that I would not just admit it and treat it to feel better. Oh wait because that isn't it!! And I am not letting people play with my brain chemistry because they lack the tests to prove me wrong. Keep fingers crossed that this is not another wasted adventure. I don't even want to change anything at this point I just want it to have a name. Nicole how are you doing with the prednisone? That always helps me to some degree and if nothing else I get so much done because I climb the walls on it. I usually have to take Valium to balance it out. The dr agreed to that when he came in to his office and found I had rearranged his office!! It made more sense the way I made it!! Lol