Day 2 of my bad headache, I passed out and had a seizure. I went to the emergency room, of course they couldnt do anything but send me to another neurologist. Day 6 of my headache and Im still getting so dizzy so bad that I go blind for a moment then regroup with a brainfreeze-type of pressure headache, anyone know what could be wrong, or is it just my chiari flaring/acting up? Does anyone else go a month or a couple months with no symptoms, then all the sudden expierience episodes of dizziness, headaches, nausea, unconsiousness, rare seizure? Is it normal or is this what I have to look forward to long term? Please anyone who has a suggestion, idea, or thought on whats to come, please do so.... :(
I’ve just been diagnosed myself so I surely don’t have all the answers. That being said I’ve known something was wrong for years and have gone through periods of feeling great and then periods of feeling awful with no explanation. For me it is progressively getting worse and closer together. Now that I actually have a name for what is wrong I’m trying to find a NS that will treat me and not just blow it off like everyone else has for the last 5 years. Be diligent about finding a good NS…it will help your peace of mind if you are confident in your doctors and their answers. Good luck to you!!
Hi..
Tears came to me when I read your post..then I went to your profile and my heart aches for you. You are so young and have a family...
When I read your post it brought me back to that dark place I too had been and some days I still have , what I call, my dark days..but trust me....it does get better.
I had decompression surgery almost 4 yrs agao ..with some positive result...however, I still struggle with pain and weakness..but I must say that at least now I know wht it causing it for the most part..that olone gives me a sort of peace, if that makes sense?
Personally, I have to tell you of just my own journey....before I was properly diagnosed I was a real mess..mind , body and spirit...no doctors seemed to think Chairi was causing my symptoms...but they had no idea what was..I had the million dollar work up back then and the only thing that kept popping up was Arnold Chiari Malformation.
Then I took the advice of my primary and went to see the Chief Neurosurgeon at a large hospital in Rhode Island, where I was living at the time....then it all fell in to place....
4 yrs later..post op..I have good days, so-so days and days when I want to scream from the weakness and pain. But I must tell you that I am better than I was 4 yrs ago.
The dreaded Chiari head aches are now bearable and not nearly as frequent...
Then I found this group and Lord, it has been such a blessing to me...the people here are sincere and will freely share their own histories with me and everyone else..
I have made a few real true friends here...I know that may sound hokey and weird...but honestly...I have friends here that know me better than most people ...I guess that is b/c they 'get it' and now we 'talk' about all kinds of stuff..not just Chiari, which we share togther..My friends here have picked me up when I am on my knee with head in hands...That makes the Chiari symptoms easier to bear.
I am rambling on..sorry..I just want to end with this....NEVER GIVE UP HOPE...get to know folks around here....the pain is less when you have people to talk to about it..people who have been where you are.
Know you are not alone...keep us updated on how you are.
Peace,
Lori
I started with months of no symptoms and then the occasional extreme headache that would lead to a popping feeling in my head that would in turn lead to me passing out.
6 years later I am passing out on a regular basis. It’s become so normal to me and my family that they just leave me on the floor until I come back to consciousness. I don’t mean to scare you…but in my experience it has gotten worse. Much worse.
I finally was diagnosed and have surgery scheduled. I hope the surgery helps. I’ve become a prisoner in my own body. I can’t drive. I can’t go shopping by myself. I can’t go anywhere with my family without an escape plan in case I pass out. A easy, discreet exit plan in case my husband has to carry me out.
I’m so sorry this is happening to you. I wish I had some sort of help to offer. Have you had surgery?
I’m too scared of the risks of surgery, I have 4 kids and a loving husband, I couldn’t risk losing that. Passing out is a normal routine but I go blind for a few seconds, still conscious, more than anything, a couple times a day, and it’s followed by a pressure headache I call “brain freeze” headache. With my luck, I expect the worse, I’m just scared because now I’m having memory problems (bad) and getting my norm headaches and dizziness more frequently. Now I’m rambling, and I’m talking to ALL… I’m scared what’s to come if things never get better. Double sigh…
Okay, I just showed a perfect example of the memory loss thing. After writing my reply I went back and read my original discussion and I just repeated myself w a couple things and wasn’t even aware of it. How rude must people think I am when I don’t remember conversations I have, as if I wasn’t paying attention when in reality I do everything I can to remember as much as I can, I started a diary in cause one day I lose all that I strive to keep and hold so dear, memories. Those who never experience this prob will never no the value, till u struggle trying to figure out how to program your brain to work right. I havent found the right …( ok, I forget what it’s called when the outcome of an experiment is solved so…) I’ll just say I haven’t found the right way to remember without struggling so hard… I guess double double sigh. I don’t think it helps to also have ADHD aaaaarrrrrrrgggghhhh it’s nice to talk w all of you, especially finally, someone/s who can relate, who won’t look at me like a hypochondriact. That’s how I feel people persive me, unless they just don’t get how serious I feel this is…
Deia,
My heart goes out to you. I fall quite a bit if I'm not careful and I'm always worried I'll do more damage. I always feel so bad for my kids. The looks on their faces when I fall is so difficult to deal with. They help get me off the floor/ground and worry about me for a few days afterwards. I say this because your worried about your family and I can tell you they must worry about you very much. The symptoms you describe are really scary and they must be awful to go through. Have you seen a neurosurgeon that treats Chiari patients? It doesn't mean you have to have surgery but you will be able to make an informed decission. I know you are scared of surgery we all are but the surgery and pain afterwards is temporary. I don't want to scare you anymore than you are but you never know what damage is being done during your spells. It sounds like you have a beautiful supportive family and they would do anything to help you feel better. No one should have to live with what your living with. You deserve to feel better and get some answers to your questions.
Wendy