I hope everyone is doing as well as they can possibly be doing. I am sorry I have been absent. A lot has been going on in my life.
Lately I have been having horrible headaches with my chiari. None of the 4 meds the neurologist has me on are helping. I do go back to see him again on Oct 21st. I do spend a lot of time in bed and also in my pj's. But some days I have no choice but to get up and get showered and dressed to take care of my responsibilities and to take my teenage daughter where she needs to go.
My mobility is becoming a huge issue. If I stand to long or sit to long, I feel light headed to the point I feel like I might black out. Is this a normal thing with chiari? It hurts to walk and sit. I also suffer from fibromyalgia so I am not sure with is causing the pain in regards to standing or sitting. But the headaches I know are the chiari. I can feel pressure in my head too. Over all, it makes me wanna just rip my brain out when I feel that bad.
Not sure how to approach all of this with my neurologist. If you all have any tips or suggestions for me, that would be awesome and very much appreciated!
I get feelng of a black out coming only when I'm doing something, mostly- going somewhere while I don't have energy for it. Oh, and when I'm stretching my back on one of those bars you put in the doorway. I don't do that anymore.
One thign that comes in mind- do you have a good posture? If not, that might add up with the other stuff and cause the blacouts while standing or sitting, or at least discomfort. A way to check this is putting your inedx and middle fingers to the cupids bow. the hand should be relaxed, elbow facing down. This will put your shoulders in the right position, if they already aren't.
I don't know, maye that can help.
I'm starting to think I should write a pedantic list of my symptoms and questions, and take someone with me, because doctors have the habit of being in hurry and interupting, so this should help.
My advice is bacically to tell everything thst's bothering you, everything. You are there for answers.
I get very dizzy, and feel like I will black out (although I haven’t) any time I walk.
I’ve been lucky with my many, many, dr appointments. I speak to them just like I would anyone else, let them know everything possible going on with me (there’s a LOT!) and they’ve all listened and actually tell me I’m not crazy! Just be honest and document your symptoms. I find myself taking a list of topics to discuss to each of my appointments.
Good luck!
Thank you for the tip. I will definitely do that. Albeit I will type it out. I get fatigued with writing and keeping my head down gives me really bad headaches. I don't have very good posture. I try to sit straight but I fail miserably at that. LOL. Stretching actually makes me feel really weird. In addition to the chiari, they found I have a pinched nerve and herniated disc in my cervical and bulging discs in my lumbar. Maybe that is why when I stretch it gives me a funny feeling in my head. I lack energy a lot. Housework suffers quite a bit. I keep telling myself to just do a load of laundry a day and fold and put it away. Luckily my teenage daughter helps with the dishes :)
Fugu said:
Hi, Jennabug!
I get feelng of a black out coming only when I'm doing something, mostly- going somewhere while I don't have energy for it. Oh, and when I'm stretching my back on one of those bars you put in the doorway. I don't do that anymore.
One thign that comes in mind- do you have a good posture? If not, that might add up with the other stuff and cause the blacouts while standing or sitting, or at least discomfort. A way to check this is putting your inedx and middle fingers to the cupids bow. the hand should be relaxed, elbow facing down. This will put your shoulders in the right position, if they already aren't.
I don't know, maye that can help.
I'm starting to think I should write a pedantic list of my symptoms and questions, and take someone with me, because doctors have the habit of being in hurry and interupting, so this should help.
My advice is bacically to tell everything thst's bothering you, everything. You are there for answers.
Thank you for your tip. I am definitely going to type out a list of symptoms and take with me to my appointment. Maybe if I hand it to my neurologist we can go from there. I try to remember everything but tend to forget a lot of stuff I want to discuss during my doc appts. I often feel dizzy or light headed when standing or walking. Walking is actually quite painful for me. I can't do it for very long. :) Katrina Burgess said:
I get very dizzy, and feel like I will black out (although I haven't) any time I walk. I've been lucky with my many, many, dr appointments. I speak to them just like I would anyone else, let them know everything possible going on with me (there's a LOT!) and they've all listened and actually tell me I'm not crazy! Just be honest and document your symptoms. I find myself taking a list of topics to discuss to each of my appointments. Good luck!
There was a lecture by a physiotheraphist who explained how some posture problems can be easily fixed by therapy. He said, some Chiari patientsgo into surgery, hoping decompression would relieve from the pain, but they come out dissapointed. And then they go to phisiotherapy and only then the pain lessens. Or people want to go in for the surgery, but do the phisiotherapy first, and end up without surgery.
Talk to your doctor about those discs and nerve. I can't even imaginge what kind of pain you're going through. I had a sciatic pain once for a week.