(This is from a friend of mine, received sometime in 2000, who prefers to remain anonymous. Not me. I don't do diet sodas... Sugar. The real thing.)
Aspartame Toxicity: a story
To save typing, I'm sending this same email to colleagues, friends and
family. Ì'll let you know upfront: this is a long email.
As you all know, I've been ill for nearly five months-- since August 1. In
my last mass email, I promised an update when I had good news. Well, it's
time for that. I'm not back at work yet (so don't start drowning me in
emails yet!!), but I'm ready to start back part-time on easy stuff, from
I saw a neurologist last week, and so I can now tell you (officially) what
was wrong with me. It was known from the beginning that there was a problem
with my inner ear-- the diagnosis was labyrinthitis (ie inner ear
infection, which is viral), although the neurologist suspected it might be
a benign positional syndrome. Either way, the treatment and
outcome are the same: there was nothing doctors could do but let time cure
me, and encourage me to do activities which challenged the symptoms.
Despite 4 months and my best efforts, I still have some residual symptoms.
Bottom line: although labyrinthitis/the syndrome can take 6 months (or
more!) off work, patients usually make a complete recovery (slight hearing
loss is possible, though).
The catch was that I developed other symptoms, which had nothing to do with
ears. These were the scary ones-- we didn't know why I had them, they
didn't seem to be going away-- in fact, they got worse-- and they affected
the functioning of my brain. I couldn't read, because I couldn't focus on
the words and concepts. I couldn't handle news magazines, novels, even
newspaper articles. I couldn't do anything that required concentration. I
couldn't do even the most simple of analysis. I lost the ability to
articulate myself-- I couldn't form coherent sentences, find words, and
developed a stutter. I couldn't even form the thoughts, which explains why
speaking was a problem. There was memory loss. There were mood changes--
I'd suddenly be angry or upset, and then a minute later would be fine.
Headaches. I couldn't use a computer without nausea and dizziness.
As if that wasn't enough I experienced severe joint pain. Sure, you all
know that I'm a dilapidated mess (back, wrist, bursitis), but this
deterioration was strange; it didn't follow my typical patterns in that
there were rapid swings of severe pain and then being fine. I was cold a
lot, but then would suddenly feel hot-- and would switch back to cold just
as unexpectedly. My eyes bothered me. I was always tired, but I still had
trouble getting to sleep. I lost fine motor skills-- I was dropping things
all the time, and I also discovered cuts and bruises that I couldn't
remember getting so I must have lost feeling. And the cuts took a long time
to heal. Severe abdominal pain. Itchiness. And more.
My doctor sent me for a multitude of tests, to rule out very serious and
chronic diseases-- diabetes, manieres, MS, are the ones I know about. There
were blood & urine tests, abdominal exams, several types of hearing and
auditory functioning tests, tests of the balance mechanism, a brain scan.
But everything came out normal. They still didn't know what was wrong-- and
I was getting worse. It was terrifying. I should say that my GP has been
quite good through all this (ie. didn't have to be pushed to do more tests,
and never doubted me), and George was terrific (I was totally depended upon
So, you're wondering how I went from that to getting better? By total
fluke. It so happened that George's aunt, a cardiologist in Mexico,
regularly scans the internett for medical related information (like many
doctors). She forwarded an URL to her family, and George's parents read it
and thought the list of symptoms sounded like mine, and showed it to George.
He immediately called me and summarized it, and then we got printouts for
me to read (slowly!). We started a test of this Thursday morning, November
17. We knew it would take 2-4 weeks until I showed any signs of
improvement, if the theory was accurate. However, within three days, I was
showing improvement-- which is remarkable, given I hadn't made any
improvement in the previous month (a fact that had me teetering on the edge
of depression). It's been four weeks now, and I can finally report that I
see an end to this (exact date to be determined, since I gave up 4 months
ago on predicting when I'd be better!).
So, what was this new theory? Aspartame toxicity. Yes, the symptoms are
quite broad, but they're mostly neurological. Yes, the research may not be
100% conclusive. I was totally skeptical too, but was willing to try
anything, and figured the worst that would happen is that I stop drinking
Diet Coke for a few weeks and thus save money. However, my chiropractor, GP
and the neurologist all agree that the aspartame did not agree with me.
Whether it is for a broader reason, as indicated on the website, or only
applicable to certain people with a specific body chemistry, who's to say.
And the neurologist didn't even bat an eyelash when I mentioned the theory
after going over the symptoms-- both he and the GP knew about it. And my
chiropractor said it explains the strange peaks and valleys in my muscle
and joint tissue; normally, ailments progress/deteriorate smoothly, and I
was fluctuating dramatically, which happens with toxicity. One caveat: the
neurologist said that the caffeine may also have been a factor, because if
I was having trouble with concentration partly due to the labyrinthitis (ie
the brain was spending time figuring out basics like position-of-my-head
and avoiding nausea and vertigo), the speeding up due to caffeine could
have compounded problems.
I'd known for a long time that aspartame breaks down when heated; that is
why you can't buy any products that need to be heated with it, and why you
shouldn't add it to hot foods/baked goods etc. That news came out when it
first became popular. However, the website reports that apparently it
starts breaking down at 86 degrees F, and converts into formaldehyde and
methanol. And I drink my Cokes room temp, which of course (given a lack of
air conditioning at home) can get rather warm. I've been drinking Diet Coke
for years, but it became more regular this past year. I was put on
medication, for the joint pain, that made me very thirsty-- and I turned to
Diet Cokes for flavour and no calories just in time for summer. Then, the
medication for the vertigo from the labyrinthitis also made me thirsty. I
was absolutely parched, and couldn't go even 30 minutes without a drink. My
Diet Coke consumption increased to 4-6 cans per day. Apparently, aspartame
itself can cause changes in thirst, which would compound my thirst even
further. A nasty spiral!
In hindsight, this peak coincided with the worst of the symptoms. And, of
course, I continued to deteriorate because I continued to be thirsty. George
has always been anti-aspartame, and he got on my case, so to make him happy
I cut back to two cans a day. At that point, I improved slightly, in that I
was able to speak better, could piece together thoughts (albeit slower than
usual), and could ride a little in cars or do tasks that required a little
focus. But it was after I cut out all aspartame (yogurts, diet coke) that I
made dramatic improvement.
The symptoms of aspartame can mimic multiple sclerosis, systemic lupus,
fibromyalgia, according to the web site. I was tested for MS. But the
problem is, that the tests come out 'clean', and the patient doesn'T know
what's wrong, or the cause-- and so innocently keeps
drinking/eating/chewing the stuff. Symptoms to worry about: spasms,
headaches, shooting pains, numbness in legs, cramps, vertigo, dizziness,
headaches, tinnitis, joint pain, depression, anxiety attacks, slurred
speech, blurred vision, memory loss. My aunt knows of a prominent surgeon
in Montreal who had to give up his medical practise because he lost his
vision-- and then regained his sight after quitting aspartame.
In fact, there are 92 documented symptoms attributed to aspartame, and the
majority are neurological. According to an access to information request,
the FDA revealed the following list, in order of prevalence, back in 1995:
headache, dizziness or problems with balance, change in mood (quality or
level), vomiting and nausea, abdominal pain and cramps, change in vision,
diarrhea, seizures and convulsions, memory loss, fatigue, weakness, other
neurological, rash, sleep problems, hives, change in heart rate, itching,
change in sensation (numbness, tingling), grand mal, local swelling, change
in activity level, difficulty breathing, oral sensory changes, change in
menstrual pattern, other skin, other, localized pain and tenderness, other
urogenital, change in body temperature, difficulty swallowing, other
metabolic, joint and bone pain, speech impairment, other gastrointestinal,
chest pain, other musculo-skeletal, fainting, sore throat, other
cardiovascular, change in taste, difficulty with urination, other
respiratory, edema, change in hearing, abdominal swelling, change in saliva
output, change in urine volume, change in perspiration pattern, eye
irritation, unspecified, muscle tremor, petit mal, change in appetite,
change in body weight, nocturnal, change in thirst or water intake,
unconsciousness and coma, wheezing, constipation, other extremity pain,
problems with bleeding, unsteady gait, coughing, blood glucose disorders,
blood pressure changes, changes in skin and nail colouration, change in
hair or nails, excessive phlegm production, sinus problems, simple partial
seizures, hallucinations, many lumps present, shortness of breath on
exertion, evidence of blood in stool or vomit, dysmenorrhea, dental
problems, change in smell, death, other blood and lymphatic, eczema,
complex partial seizures, swollen lymph nodes, hematuria, shortness of
breath due to position, difficulties iwth pregnancy, developmental
retardation (children only), change in breast size or tenderness, anemia,
change in sexual function, shock, conjunctivitis, dilating eyes, febrile.
There's also some studies which tie phenylalanine to some cancers in lab
Bottom line: there are safe limits for consuming aspartame (alhtough
studies indicate it might be wise to avoid it entirely if pregnant, and to
not give it to children), but don't drink it warm (e.g. NutraSweet in
coffee, gum or drinks that have sat in the summer sun in your car, etc) and
take care on the quantity you drink. Perhaps it was the large quantity all
of a sudden that did me in, perhaps it was the summer's consumption,
perhaps it was a build up from more than ten years of off-and-on
consumption (peaking during my masters years, and increasing in the last
two years to peak this summer & fall).
For more information, this website has a summary (be forwarned: the
spelling & grammar are appalling), which provides links to studies and the
actual FDA listing (including percentages).