Managing Chiari symptoms with diet and exercise and???

[MommyDeluxe]

Hello I was diagnosed with CM about 6 years ago but was told decompression isn't needed until I can no longer deal with my symptoms. Since then I try to watch my diet as I have found that certain things make my symptoms worse (sodium, caffeine.)
Just wondering if anyone else has found that certain diet and exercise regimens hurt or help.
Thanks!

[jenshead]

Hi,

I haven't been on here in a long time but I just popped on and saw this post.  I consider myself very, very fortunate that I was able to resolve my symptoms like 95% through diet.  I had terrible dizziness, headaches, vision problems, neck pain, fatigue, etc etc...all at the age of 21.  It took 4 years for me (not my doctors, that's for sure) to figure out the inflammation thing and go on the hunt for allergies.  I found out by doing an elimination diet that I have a wheat allergy and now I am doing AMAZING.  No surgery.

It does make sense.  Food allergies (and other things like high blood pressure, dehydration) cause inflammation.  Any kind of inflammation is bad for us like selma said, because our CSF is already having trouble flowing.  Even if you don't feel the level of relief that I did, it's totally worth exploring even if it just helps a little.  This condition is awful, any little bit helps.

I'm happy to share any further info.

[htaylor429]

I would love further information. Anything helpful.

[selmaS]

Hi and welcome to the Chiari forum.

Since this is an older thread the above poster may no longer be an active member you can attempt to contact them by sending them a PM ( private message ) which should generate an email to inform the poster someone is trying to contact them. OR you could post asking a question to the active members of the forum.....create a new thread and ask for info regarding diet and inflamation.....if you need help doing this, just ask here and I will try to help guide you through it.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so glad the gluten free diet is working for you...several of the Chiari specialists do suggest a change in diet and it is good to hear it can create a positive effect.

Please keep us posted on your progress with this diet!

[TinaAnn82]

I was diagnosed with Chiari 1 malformation 9 years ago. I have not had the surgery as it is a last resort for me. I have suffered SO much with dizziness but last year I put myself on a gluten free diet. As far as I can tell, it has helped more than anything else I've tried. I still have symptoms but it is way better.

[selmaS]

  Hi and welcome to the Chiari forum

While it is true not everyone will require surgery and some can do without it....but it is not a decision we can make on the fact we do not want surgery we have to look at all the facts and how our Chiari is affecting our health.

Not everyone is over weight or needs to revise their diet but still has severe Chiari symptoms.

I am happy you are seeing improvements with the changes you have made and I pray you continue to have those benefits.

[speasjr]

Hi i was diagnosed with chiari about 1 year 1/2 ago. I really think my weight gain brought on the symptoms i was always around the 140s and noe im pushing 200. I have found that diet and exercise relieved my headaches. Detoxing also helps it clears out all the toxins in your body that might have something to do with inflammation. Chiari is something that we have to live with but we can not let this beat us. I dont want the surgery thats why im trying more natural alternatives to relieve pain. We can fight this  

[selmaS]

  Thanks Jen.....I did not mean they would follow your diet but to see what you had to do....but your journal entry is great !! Thanks again for sharing.....

Yrs ago I had to use the elimination diet on my DD as she was allergic to so many things and she was so young the Drs did not want to do needle testing for allergies...and I was able to figure out what she needed to avoid....and many of those things she outgrew....but I do have an idea on how to do the elimination diet....

As I have mentioned many times not everyone with Chiari will need surgery....and if we can avoid it we should....and then there are those that no matter what they do, may need to have it....

Thanks again : )

[jenshead]

I posted a rather lengthy journal entry about my experience and what I tried to help my symptoms.

http://www.medhelp.org/user_journals/show/1217669/My-Chiari-and-how-a-food-allergy-gave-me-my-life-back

I can post my diet if someone is really interested, but my diet is kind of irrelevant because what helps is knowing what you are allergic/sensitive to as opposed to everyone with Chiari avoiding a specific food like wheat.  If anyone wants to try an elimination diet and needs help understanding what to avoid, feel free to PM me.  It's a case-by-case kind of thing and I'm certainly no dietician, but I'll try to help.

[selmaS]

  Thanks for sharing that...good to know it can have that kind of impact....if possible it would be great if you gave a sample of the diet you follow....

Use the journal as a way to post it so it is easy to locate...thanks again for sharing this positive info.

[selmaS]

  Me too...but no one wants the job....lol....I think that is how celebs are able to look great all the time, they have the help...they got the $ to pay for it....I guess that is part of my problem, I want someone to do it for  free....lol...

[baccalynnwv]

I always have the best intentions of keeping food journals. I even use myfitnesspal, etc. But, I'm so impatient.. LOL.. and I can't seem to stick with anything. I always say I'll track what I what I eat later and then I end up forgetting for three days. Then I never pick it back up. I need a personal assistant to follow me around all the time.

For more reasons than one obviously. LOL.

[selmaS]

  Sure...no problem....the site is doing updates and it is not easy to locate the Health Pages....here is the link to the list of foods...

http://www.medhelp.org/health_pages/Neurological%20Disorders/Anti-inflammatory-Foods/show/1023?cid=186

Let me know if you have any issues getting to this page or have more questions.

You may want a list of foods for those that have GERD.....let me know.

[Jennifwe223]

Hi, I was wondering where is the list of foods or can you tell me some of the foods that we should avoid because I have noticed that some foods that I eat are triggers for me not feeling well as soon as I swallow, I will get sick ( having an episode) It was difficult for me to track because when I tried having a food journal, some of the food that gave me an episode the first time, did not give me an episode the second time. Now I am having  choosing what to eat because most foods are causing me to have an episode and extreme stomach pain!

[selmaS]

  Do curls with soup cans....light weights....they are the best thing we can do....I also lost upper body strength and found some has returned post op but I have a long way to go still...lol...and that is on me....

[baccalynnwv]

I was wondering if there were any kind of arm or even easy back/shoulder/trap exercises we could do to help with strength? I am losing muscle tone so fast its unbelievable in my shoulders and my arms. I have a hard time not taking a break while washing my own hair! Up until May I was a fairly healthy 34 year old woman!

[selmaS]

  Hi and welcome to the Chiari forum.

  Yes, certain foods can cause inflammation and we need to avoid that as the area the CSF needs to flow is tight already...so avoiding those foods can be helpful or eating those that are anti inflammatory...we do have a list of those foods.

AS for exercise,  I have not found anything that helps with symptoms, but the easiest on them is walking on a flat surface...no up hills....and rough terrain....swimming is also ok...for me tho I found I can swim better on my back as the arm and the way I need to hold my head up swimming the regular way was a bit much for me..

Have you had any new symptoms or issues since you were DX'd?

Or a new MRI to see if things have changed?

[JonHelguson]

Avoid Sugar and Carbohydrates. I have Chiari I with a 12mm "hearniation" and I do/have experience(d) a laundry list of symptoms. Face numbness to difficulty breathing. Paleo/low carb diet, with resistance training keeps me 90% symptom free (face numbness and other minor symptoms will still be present). Anything that reduces stress and keeps systematic inflammation down will help. I cannot over stress how important overall health and fitness is to a condition such as this. Most importantly, be honest with yourself, are you taking care of yourself outside of targeting individual symptoms.