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My Chiari and how a food allergy gave me my life back

Sep 28, 2014 - 2 comments

I have a Chiari Malformation that was measured at about 4mm with some impact to CSF (cerebrospinal fluid) flow.  I saw Dr. Heffez at the Wisconsin Chiari Institute and his advice was to not operate until I could no longer handle the symptoms because there was no other risk to my health.  I have no other complications from Chiari and no associated conditions.

I am writing this to share a little bit of my story and what I have done with my lifestyle to eliminate nearly all of my symptoms.  Not everyone, maybe even very few people, will be as fortunate as I was to have these things work.  But even if it helps you a little bit, even if it just takes the edge off of your pain, it's worth it.

I had a ton of Chiari symptoms at the age of 21.  I was perfectly normal one day and in terrible shape the next.  I spent 4 years fighting with doctors to get answers and to get some relief.  In the beginning, I was too dizzy to drive or walk without assistance, I spent most of my time in a recliner or in bed, my vision was so messed up I couldn't read, I was exhausted all the time, my neck hurt, and my head hurt so bad that I would wrap it in ice packs and just try not to cry (because crying made it worse).  

Eventually my doctors lucked out with a medication called Diamox.  It made things a lot better - I could drive, walk short distances, read, and the headaches weren't constant but still just as bad.  The side effects of Diamox are horrific (kidney stones for example).  My doctors seemed to be satisfied with this arrangement since I was doing so much better than before.  They didn't try anything else, even though they didn't think Chiari was my problem (so what was??).  So I had to take my health into my own hands.

Diamox reduces fluids, including CSF.  A little bit of looking around online and thinking (that was the hard part - that light bulb moment where you piece together something that seems so obvious in hindsight) told me that inflammation = more fluids = more CSF.  So I needed to do everything in my power to reduce inflammation.

Here is a list of everything that I know of that can help with inflammation in our bodies.

Weight Loss - I was never able to lose any weight, so I can't speak to its benefits, but I do make a conscious effort to eat better.

Blood Pressure - My blood pressure was normal but I got a low dose of BP medication.  It helped.  I was able to walk without hearing my footsteps pounding in my head.   If you experience that, talk to your dr.

Drink lots of water - I can definitely see a difference in how I feel overall based on my water consumption.

Overall diet changes - Less salt, less processed foods, more balanced diet.

Medications - some medications cause fluid retention.  You may not be able to just stop your medications, but it's at least worth knowing about.

Allergies - If you have allergies to pollen or dust or whatever, get treated if you can.

Food allergies - If your symptoms correspond to food, even if you can't pinpoint what, investigate further.  Keep a food journal, go on an elimination diet.  I used to have food allergies (intolerances?) with wheat and dairy being the worst ones.  I took a chance and went on an elimination diet (complete avoidance of certain foods for a week).  I went off of my medication and felt great.  Then I slowly reintroduced foods until my symptoms came back.  I have been on a wheat-free diet for a year and a half, I'm off all of my medication, and my symptoms are 95% GONE.

I still have a Chiari Malformation, it's not going anywhere.  I have to listen to my body.  I have to avoid some things in my life - no high impact exercise, avoid lifting anything too heavy, and I have trouble turning my head to the right.  The usual Chiari things will still get me - coughing fits are bad news, bending over too much is a no no, etc.  But I'm so, so much better.  I used to need 10-12 hours of sleep a day, now I need 7-8.  I used to be in SO MUCH PAIN, now I'm in none.  I used to be dizzy all the time, so much so that I learned to just get around while being dizzy, and now the only time I'm dizzy is if I hurt my neck or turn my head in a way that bothers me.  All because of a stupid food allergy.  So like I said - if you think any of what I wrote could help, just DO IT!  Most of it is risk free and any improvement is worth it.

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by selmaS, Sep 29, 2014
Thanks this is very well written and great info for all with Chiari to read.....I feel keeping a journal regardless if it is a food allergy is helpful when any medical issue arises we can refer to it and find a common thread....I suggest it for those with GERD/IBS issues as well as Chiari....including what we eat, drink, and can be a factor as record things that happen and see what matches for how your health changes.

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by tatish, Nov 04, 2016
Thankyou so much for this. my sister is strugling with weight and has gone thru the same challenges of chiari malformation 1, this will be helpful to her.

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