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POTS link to MSG

Battling the MSG Myth » Share Your MSG Story/Recovery » POTS link to MSG « Previous Next »

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WVdesperate
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Posted on Friday, June 12, 2009 - 5:51 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

POTS or Postural Orthostatic Syndrome is/was the diagnosis. The problem with this however is the Syndrome part...meaning there is no "cure" as symptoms vary person to person...what works for one does not work for another. More to follow
WVdesperate
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Posted on Friday, June 12, 2009 - 6:00 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

The back story is that it has taken us (more specifically it is my wife's diagnosis)a few years to get to this point. Long story short, start with diagnosis(s) of irritable bowel, gall bladder removal, follow with debilitating migraines lasting weeks with little to no relief from even the harshest narcotics, add in loss of consciousness
WVdesperate
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Posted on Friday, June 12, 2009 - 6:11 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Now add to it the tachycardia and svt, a heart cath with cardiac ablation, chronic fatigue, visual disturbances and worse migraines. Even through ER visits and a very sympathetic doctor working with and running the gambit of tests and repeating the tests, no clear answer has been found. First one diagnosis, then another but the pattern of illness never has been clearly repeatable. (The good thing about the testing, it found an brain anyeurism before it had the chance to rupture.) Still her (and consequently our family) quality of life is quite diminished especially for a early 30's gal.
WVdesperate
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Posted on Friday, June 12, 2009 - 6:18 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Even had and or have a diagnosis of Basilar artery migraine, even though it doesnt perfectly fit into this category either. Try this drug, try that drug, this works, that doesnt, this stopped working as well....
Oh yes, I forgot the thyroid, hypo or hyper I can never remember but it is out of whack too. Nothing ever works perfectly or quits being effective after initial good results.
WVdesperate
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Posted on Friday, June 12, 2009 - 6:25 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

So given the range of symptoms we are moved into the POTS diagnosis, due in part to the passing out. When passed out, she shows some mild seizure-like activity but nothing shows on EEG. She has been tested for everything, but nothing is really giving all the answers, only partials. We just keep adding new symptoms and all this while trying to raise 2 young children. Thank goodness we are close to family and they can provide help!
WVdesperate
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Posted on Friday, June 12, 2009 - 6:29 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Bottom line, research brought us here accidentally, was actually looking into aspartame link to some of her problems when we ran into this. We have the book, are learning to avoid, we are about a month into the whole deal. The only thing we have changed in her "treatment" is the diet which is glutamate free except of course when it sneaks in. THIS IS THE MOST NORMAL MONTH WE HAVE HAD AS A FAMILY IN YEARS...MOMMY NOT IN BED WITH MIGRAINE FOR WEEKS ON END!!!!!!!!!!!!!!!!!!!!!!!
WVdesperate
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Posted on Friday, June 12, 2009 - 6:34 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

So far so good, the learning curve is there but things are getting easier, garden is planted, we are both re-learning to cook from scratch rather than from frozen or can.
These symptoms and this story might be looked on by the people here as "ah ha! I could see it coming", which is great, I hope to get the POTS diagnosis into the mix as some "sufferers" might actually benefit as well from this dietary change.
WVdesperate
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Posted on Friday, June 12, 2009 - 7:26 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

For reference: chronic fatigue, fibromyalgia, chronic headache syndrome, basilar artery migraine, POTS, SVT, paliptations, IBS, hypothyroid (i think), diseased gall bladder (subsequently removed), endometriosis and ovarian cysts(may or may not be related), anyeurism, TMJ, h pylori ulcer (one of original symptoms), skin rashes...the list goes on these are just off top of my head but we are currently on the POTS study and treatment medically and on the Glutamate free in reality.
Anonymous
 
Posted From: 96.238.11.226
Posted on Tuesday, June 16, 2009 - 3:38 pm:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Hang in there you are on the right track. Your wife if blessed to have you on her side. This story is so familiar. The best months are ahead of you now. God Bless you all, especially the little ones.
Deb A.
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Posted on Wednesday, June 17, 2009 - 6:32 am:   Delete PostPrint Post   Ban Poster IP (Moderator/Admin only)

Please keep us posted. Good to hear that you are taking the ball and running in the right direction. Glad you found us and that the book helps, too. There are so many "syndromes" out there with symptoms mimicking MSG toxicity. What's frightening is that so many doctors are clueless about the glutamate connection.

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