Are there any foods/drinks you stay away from or eat because of chiari?
For example, alcohol...I can't drink much at all. I get an instant hangover if I drink too much. I've never been able to go out and party like most people my age (which sometimes is a good thing because people are stupid with the things they do)
Fitness/Workout routines that you do differently now? Or how does your routine work to not over exert yourself/strain yourself into a chiari headache?
Once I started with the depression my habits turned lazy. I didn't (still don't) want to do anything much. I am trying to get myself back into my workout habits. I felt better overall then too.
but could I also add/ask what happens to those who do not take the advice given to them as a chiarian, especially when participating in fitness, activities, lifting too much, etc.? Or is it unknown, and open to the possibility that anything can happen. When all the neurosurgeon tells you 8 months post-op is "take it easy", and theres no need for follow-up, and no more detail, this could be taken in many ways, by many different people
thank you all for your responses, knowledge, experience, and support!
We know our own limits...sometimes we have to test them (accidental or not) for example...hard core cleaning...you have to know when to stop and take a break (I get in modes where I start cleaning and go crazy...maybe my OCD lol) I have to sometimes make myself stop because I'm straining myself from scrubbing or whatever the case may be. When I clean my room (which is usually the worst because thats where I'm the most ocd because it is my space) I might just start off straightening it up and it turns in to moving the whole room around (I can't do that as much in my room now as I could before when my room was upstairs..I had smaller furniture, more options on moving it around) I can't do that so much anymore because my room is shaped weird and the furniture is a lot bigger so it can only fit certain ways. I have to stop myself because I get in the mode and just go then my shoulders and neck start burning from doing too much.
I was told no rollercoasters (which really sucks) So if I'm at an amusement park...I watch the rides and really think about how it will affect me while I'm on it and afterwards. That way I don't just go on it and be done for. I also think about how I'm feeling at that moment. If I'm feeling great with little or no pain, some things I know I can do more at that time.
You really do have to listen to your body.
Abby said:
Good Question Nikki,
I know when I lift something over the what I should, I get a headache, my neck and arms start to hurt. If I overdo and do too much activities, I am drained for a few days.
Doctors do not know much about the outcome of what we can and cannot do. I think we have to be our judge as to our limits and abilities. Still much needs to be learned about what we have.
I know I have to rest when I need it, rest my neck and shoulders. If I don't and keep on, then it becomes too painful and I will have to take extra meds. Let your body tell you when it is time to stop.
I don’t drink or exercise…as per Dr.'s orders. Just walking for long periods of time send me into what I call “episodes”. I really wish there were something active I could do, maybe I’ll feel better after all the snow melts :o)
I'm not the one with Chiari, but wouldn't the Low Impact swimming be almost useful, as the water acts as support, now I'm not saying to start swimming laps, but I would think that you might be able to get away with doing more while in the water, as oppose to out of the water.
Has anyone been told by a doctor to or not to swim?
Personally, I’ve never learned to swim (I can only float on my back lol) so I don’t know. I was never told no to swimming as low impact. I was told no to bike riding without a helmet (no worries there as my balance won’t keep me up on one…I need to start all over with training wheels. no lie.) No rollercoasters, no physical contact sports, etc.
I also do not drink as it doesn’t mix with my meds… I want to exercise but never have the energy… I was going to a gym and used to do aqua aerobics need to get back into that again… I heard that hot tubs or whirlpool is not good for someone who has Chiari has anyone heard of that?
Thanks so much I would be your walking buddy any day :o)
Abby said:
Crystal,
Walking is all you need to be doing. When the weather breaks, I will be hitting the trails too. Wish you lived closer, we could be walking buddies, I'd like that. Listen to your body, honey, and when it hurts, don't do it. I have learned the hard way.
If I get too hot, I get dizzy too. Almost like I’m going to passout. I had that happen last summer…I blacked out in my driveway. My sister was changing my tire and I was out there with her and I didn’t feel right. I couldn’t see all of a sudden and felt my way to the house and sat down. Then I got terrible ringing in my ears. I sat there for a couple minutes before it went away and my vision came back. It was the strangest thing. It wasn’t really a ‘black’ out, more like a ‘white’ out. All I could see was white. I told my neuro about it, he said it was (I can’t remember what he called it) basically not passing out, but similar. I was still conscience and knew what was going on…
I’ll have to look up the term my neuro called what happened to me. It was so weird because I’ve passed out before and this was not the same. It was very similar…but it was all white. I couldn’t see or hear but somehow I still made it into the house.
I just joined this website this week. I read this post about exercising and I agree with you that aqua therapy is great. I go twice a week and if I miss I can really tell the difference. I had my surgery in Jul 2010 and I've been doing the therapy ever since. After the therapy ended, the facility lets patients do maintenance on their own for $5 a visit. I'm fortunate to live close to the Chesapeak Bay and the beach and I go the Boardwalk and walk there. They have benches every few feet, so I can stop and rest when I need to. The longer I do it, I get better at it. I find I can go further now without stopping so much. If I miss for awhile like I have for the colder weather, it is difficult again. I don't drink alcohol; I take medications, but I've never really been a drinker anyway. Hugs. Shirley
Linda Burnard said:
I also do not drink as it doesn't mix with my meds... I want to exercise but never have the energy... I was going to a gym and used to do aqua aerobics need to get back into that again... I heard that hot tubs or whirlpool is not good for someone who has Chiari has anyone heard of that?
I wish I lived closer to OC! I would love to get up and walk the boardwalk!
I’ll be heading down there soon for St Patricks day weekend with the women in my family for our annual girls weekend down there! I’m excited!
Shirley C. said:
Linda
I just joined this website this week. I read this post about exercising and I agree with you that aqua therapy is great. I go twice a week and if I miss I can really tell the difference. I had my surgery in Jul 2010 and I’ve been doing the therapy ever since. After the therapy ended, the facility lets patients do maintenance on their own for $5 a visit. I’m fortunate to live close to the Chesapeak Bay and the beach and I go the Boardwalk and walk there. They have benches every few feet, so I can stop and rest when I need to. The longer I do it, I get better at it. I find I can go further now without stopping so much. If I miss for awhile like I have for the colder weather, it is difficult again. I don’t drink alcohol; I take medications, but I’ve never really been a drinker anyway. Hugs. Shirley
Linda Burnard said:
I also do not drink as it doesn’t mix with my meds… I want to exercise but never have the energy… I was going to a gym and used to do aqua aerobics need to get back into that again… I heard that hot tubs or whirlpool is not good for someone who has Chiari has anyone heard of that?
Wow I didn’t realize that my getting overly hot I would get dizzy I thought that was just me… weird things I thought were me being strange are part of Chiari
Alicia Roden said:
If I get too hot, I get dizzy too. Almost like I’m going to passout. I had that happen last summer…I blacked out in my driveway. My sister was changing my tire and I was out there with her and I didn’t feel right. I couldn’t see all of a sudden and felt my way to the house and sat down. Then I got terrible ringing in my ears. I sat there for a couple minutes before it went away and my vision came back. It was the strangest thing. It wasn’t really a ‘black’ out, more like a ‘white’ out. All I could see was white. I told my neuro about it, he said it was (I can’t remember what he called it) basically not passing out, but similar. I was still conscience and knew what was going on…
Its always a crazy weekend. All the women/girls from 21 years and older (the oldest is 89 years old) all go. We go out to the SandBar every night for karaoke and drinks. lol (Another Chiari where I can only party hardy so much before I’m wiped out or get head pain. SUCKS.) The “oh your head hurts?” or “oh you have a headache?” questions come in then. Then the annoyance of trying to explain (when they’re famliy and should already know at least that you have it.)
Abby said:
Have fun sweet girl with your family, sound like a lot of fun.
Alicia Roden said:
I wish I lived closer to OC! I would love to get up and walk the boardwalk! I'll be heading down there soon for St Patricks day weekend with the women in my family for our annual girls weekend down there! I'm excited!
Shirley C. said:
Linda
I just joined this website this week. I read this post about exercising and I agree with you that aqua therapy is great. I go twice a week and if I miss I can really tell the difference. I had my surgery in Jul 2010 and I've been doing the therapy ever since. After the therapy ended, the facility lets patients do maintenance on their own for $5 a visit. I'm fortunate to live close to the Chesapeak Bay and the beach and I go the Boardwalk and walk there. They have benches every few feet, so I can stop and rest when I need to. The longer I do it, I get better at it. I find I can go further now without stopping so much. If I miss for awhile like I have for the colder weather, it is difficult again. I don't drink alcohol; I take medications, but I've never really been a drinker anyway. Hugs. Shirley
Linda Burnard said:
I also do not drink as it doesn't mix with my meds... I want to exercise but never have the energy... I was going to a gym and used to do aqua aerobics need to get back into that again... I heard that hot tubs or whirlpool is not good for someone who has Chiari has anyone heard of that?
where I can only party hardy so much before I’m wiped out or get head pain. SUCKS.) The “oh your head hurts?” or “oh you have a headache?” questions come in then. Then the annoyance of trying to explain (when they’re famliy and should already know at least that you have it.)