Topics Topics Edit Profile Profile Help/Instructions Help    
Search Last 1|3|7 Days Search Search Tree View Tree View  

Lisa S update

Battling the MSG Myth » Share Your MSG Story/Recovery » Lisa S update « Previous Next »

Author Message
LisaS
Unregistered guest
Posted on Thursday, January 26, 2012 - 8:36 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I wanted to post a quick update on us.

My son Alex, 15 next month, is the one that started first with reacting to FGA. He has struggled with his health and mental health for years, and we have slowly been peeling layers of the onion off to figure out exactly what is underneath and build up strategies to help him. First it was anxiety, mood, and possibly bipolar disorder; then extreme fatigue and adrenal insufficiency; then we discovered glutamate sensitivity and were able to alleviate many symptoms with strict dietary changes, but wanted to know why. Finally chronic fatigue syndrome with possible cardiac issues down the road were added into the mix.

That pointed us in a direction of genetic malfunctions, and we bit the bullet and did the Yasko genetic panel, and that seems to be the "core", and we are looking into Dr. Amy Yasko's protocols to try to address the chronic fatigue that is still present even when FGA-free.

We manage the FGA sensitivity with diet changes (hard with a teen), supplements, and low-dose Namenda.

Well, recently I screwed up and triggered an ocular migraine for myself, which I've had several times before but I got lazy, and ate conventional foods myself because I thought I could get away with it. I'm really not sure how I could be that dumb and oblivious but I had only made the changes to my son's diet, not mine. I should have known better. I guess I expected a slow reaction but this was very sudden -- over the course of a week it became obvious that I could no longer tolerate even small amounts.

Anyway, long story short, to get rid of the headaches, I have to not only get rid of all glutamate, but also wine (sulfites) and alcohol (I've been finding some fascinating connections about alcohol and the glutamate/gaba balance if anyone wants me to post them), seafood (because I have mercury poisoning and suddenly even salmon and shrimp were setting off headaches, and I found that yes indeed, mercury is like aluminium and radically increases the sensitivity to glutamate), and lastly I have to carefully manage my blood sugar, because if I go hypoglycemic it will set off the glutamate reaction. (I've known this for my son but didn't realize my blood sugar was so "off").

Anyway, I'm dealing with the "grief" all over again. It just is so overwhelming at times, that I have to manage all of this for my son (we are still trying to process the genetic results and that they mean he will have CFS for life) and now do it all over again for myself. I'm trying to just be empathic with myself, and just let the "this is so unfair" type thoughts just wash on by, since I know they will from past experience. But I wouldn't mind a little more encouragement if you wish :-)

I'll try to check back soon for responses but feel free to email me at lstroyan at gmail dot com.
LisaS
Unregistered guest
Posted on Thursday, January 26, 2012 - 8:46 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

One more thing...I've been blogging about FGA and how to eliminate it and I would love comments on my blog so that more people will start seeing it. I've taken the perspective of helping people that are eating an American diet and how to eliminate the biggest issues first, rather than eliminating everything all at once, for which I point people to Deb's website, no need to reinvent the wheel. I also wanted to address some common misperceptions (that even the functional medicine docs don't understand!) such as going gluten/dairy-free because of the glutamates.

Please say "hi" in the comments if you stop by!

Here's the address: http://stroyan.net/lisasblog/
Deb A.
Unregistered guest
Posted on Thursday, January 26, 2012 - 10:19 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Hi Lisa. Know the routine of falling off the MSG wagon. We've all been there at one time or another. I goofed a couple times this Christmas by eating some cookies and candy neighbors gave to me..whoa! Sometimes we need to do that to see just how important it is to manage our health more carefully. We owe that to ourselves and our family. Take care and will visit your blog soon.
Di
Unregistered guest
Posted on Thursday, January 26, 2012 - 2:56 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

LisaS, I went to your blog, but didn't see where the "comments" were.
Roy Piwovar
Unregistered guest
Posted on Thursday, January 26, 2012 - 4:50 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Di, Try here:

http://stroyan.net/lisasblog/comments/feed/
Dutchbabiesx2
Unregistered guest
Posted on Wednesday, April 11, 2012 - 8:27 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

LisaS has been a great source of information for me! through her struggle is my education. thank you Lisa!
LisaS
Unregistered guest
Posted on Monday, May 14, 2012 - 10:26 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Well, I goofed a couple of days ago and had root beer extract to see if the sulfites bothered me in the caramel coloring -- yup, nasty migraine...(and I forgot that caramel coloring is on the MSG list too, duh).

Luckily I can corral it within a day or two now. But then I went out to eat Saturday evening, and something set it off again.

Then, yesterday we went to my SIL's for Mother's day. She tries to use all real food and avoid whipping cream for my son and I(and mostly succeeds). But with a lot of other stuff going on in the family I didn't want to ask about every little thing (I asked about most). I know some things I ate weren't good, like the pita bread and the blue cheese (plain, not in dressing), and usually on top of the previous trace amounts it would be bad. So I took an ibuprofen right after we got home instead of waiting until the next day for the headache to hit, and it never did today! I'm not 100% feeling well but no migraine yet.

I'm really glad to have that option when I need it, since they do little once the migraine starts.
Dutchbabiesx2
Unregistered guest
Posted on Monday, May 14, 2012 - 10:39 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

What do you take when you do get a migrain!
Roy Piwovar
Unregistered guest
Posted on Monday, May 14, 2012 - 2:08 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Have you tried taking naproxen sodium and laying down in bed in a dark room?
ali
Unregistered guest
Posted on Monday, May 14, 2012 - 10:44 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

If im heading out somewhere where i know chances are that i will be expected to eat stuff i suspect isnt good for me, i take ibuprofen before the meal. I mean i try and avoid eating msg at all costs but sometimes families and friends can take it so personally when i question their food....
Roy Piwovar
Unregistered guest
Posted on Tuesday, May 15, 2012 - 2:34 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

My mother resented it when my dad's mother always brought her own meal to our house for dinner, but I fully supported her. She never compromised and lived to be 90. Grandmom made everything from scratch from impeccable sources like in the old country and never used anything that gave me a reaction.
ali
Unregistered guest
Posted on Tuesday, May 15, 2012 - 6:08 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Hats off to your Grandmom. We could all take a leaf out of her book. I'm getting better but hate to cause offence....:/
Roy Piwovar
Unregistered guest
Posted on Tuesday, May 15, 2012 - 7:19 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

She would keep fish swimming in the bathtub until it was time for her to kill and prepare them. My dad had to share the only bathtub with the fish. I've never tasted as good since but have never tried to duplicate it.
ali
Unregistered guest
Posted on Tuesday, May 15, 2012 - 7:37 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Eeeek....Im trusting they didnt share bubblebaths!!
Seriously thought, that is some dedication to getting fresh food. :-)
ali
Unregistered guest
Posted on Tuesday, May 15, 2012 - 7:37 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

though not thought!!
Roy Piwovar
Unregistered guest
Posted on Tuesday, May 15, 2012 - 7:50 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

ali, I'm sure he didn't take bubblebaths with them. Showers would have been icky enough.
ali
Unregistered guest
Posted on Tuesday, May 15, 2012 - 8:28 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

indeed...thanks for the chuckle though, that made me laugh.
AdaLovelace
Unregistered guest
Posted on Tuesday, May 15, 2012 - 10:44 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I think that questioning the food's ingredients can be more problematic than just simply abstaining. "I'm great--I'm not hungry" seems to work much better than "did you use baking soda instead of baking powder?" Hehe. I don't want to upset anyone.
ali
Unregistered guest
Posted on Wednesday, May 16, 2012 - 4:25 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Ive taken to cooking when invited for a social occasion at someones house. My spanish omlettes,home made breads and pizzas are now legendary and i doubt i would gain entry if i turned up empty handed! Everyones a winner :-)
AdaLovelace
Unregistered guest
Posted on Wednesday, May 16, 2012 - 1:48 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Ali, I think I need to get better at cooking. ;)
ali
Unregistered guest
Posted on Wednesday, May 16, 2012 - 10:08 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

I have had to learn quick!!! I found it so hard at first and was quite resentful at being left without my trusty packets and tins. But then i slowly grew to love it and with a change in mindset it became a hobby!!
Tom Fernstrom
Unregistered guest
Posted on Thursday, May 17, 2012 - 6:21 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Roy,

I had a friend who would fish for Walleye off my pier. Every day he would leave with about three or four "keepers" and told me that he would put them in their bathtub to "clean them out" before filleting. When I mentioned that to a copule of older friends, they stated that their parents used to do the same. They said it made the fish extremely clean and tasty. Go figure.
Roy Piwovar
Unregistered guest
Posted on Thursday, May 17, 2012 - 8:04 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Tom,

I think that's why my grandmother kept the carp in the bathtub.
LisaS
Unregistered guest
Posted on Thursday, May 24, 2012 - 9:26 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

To answer the question of what I take for a migraine, milk thistle (2-3 caps), 2 magnesium, and 2 ibuprofen seem to help some. Haven't tried Alieve. Didn't see any help from bentonite clay which makes sense since my migraines are usually the next day and bentonite works on mopping up toxins during digestion. Oh, and regulating blood sugar helps too -- especially getting a good breakfast the day after any incidental exposure since once it drops it's too late...

A friend sent me evidence that progesterone is neuroprotective but I've not seen a "direct" response to supplementation (though I definitely have noticed my sensitivity spikes high when natural progesterone plummets).

I've not tried curcumin (it lowers cortisol and we are already too low), b6 (might help).
cathy218
Unregistered guest
Posted on Saturday, May 26, 2012 - 6:16 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Lisa.....can you share more about progesterone and your sesitivity spiking and the link.
LisaS
Unregistered guest
Posted on Tuesday, May 29, 2012 - 9:10 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Sure. Generally, I tend to get a migraine right before my cycle starting or in the first few days. Keep in mind I only have 5 months of data so it's a bit supposition at this point.

Here's one article:
http://www.ncbi.nlm.nih.gov/pubmed/20980684

Here's one that mentions it:
http://www.acnp.org/g4/gn401000008/CH008.html

Add Your Message Here
Post:
Username: Posting Information:
This is a private posting area. Only registered users and moderators may post messages here.
Password:
Options: Post as "Anonymous"
Enable HTML code in message
Automatically activate URLs in message
Action:

Administration Administration Log Out Log Out   Previous Page Previous Page Next Page Next Page