About six years ago, I started drinking Diet Coke. My girlfriend drank it and it was always in her icebox. Prior to this, I probably chewed a piece of “Sugar-free” gum, or had a “Sugar-free” mint, or even occasionally put “Equal” in my coffee. I drank her Diet Coke and quickly acquired a taste for the “NutraSweet” laced soft drink. Before I begin, I want everyone to know that Aspartame, NutraSweet, and Equal are all the same thing; hence I will refer to the substance as NutraSweet- the trademark name for Aspartame.
Soon, I was drinking Diet Coke for breakfast, in place of coffee. I probably drank at least four of five Diet Cokes a day. I went on about my life and for about two and one half years, and I was doing real well. I was slowly building up my business, my finances were in order, and I was certain to ask for my girlfriend’s hand in marriage any day. Which, I did on Christmas Eve 1995. She accepted, and we started making plans for the union.
About two months later, I was sitting on my girlfriend’s parent’s sofa, early one Sunday morning and the next thing I remember: is me fighting with the paramedics as they were strapping me onto a stretcher. I remember going into a CAT scan. I remember seeing my girlfriend sitting quietly in my hospital room watching me. That was about all I remembered in the two days that I was in the hospital. I was told that I had a Grand Mal seizure.
I was scheduled to fly to New York City and begin work on an important project that Monday. I was replaced and I never made that business connection again.
I was told that I was epileptic and that I had to take an anti-seizure medication for the rest of my life. I was told by my neurologist, that he, for the record, had recommended that I do not drive my car. The only way that I can get around in my business is to drive. So, I took the medication, and drove to my subsequent jobs at my own risk. Shortly thereafter, my coworkers started to notice a change in me and my mood. They would say that it swung wildly, and without much provocation. My work was rapidly declining in the amount of calls I got, as a direct result of this. My girlfriend noticed the same thing and she decided to augment a: wait and see policy, before cementing any more marriage plans.
I visited my doctor and told him that I thought the medication was changing my moods. He said that he had never heard of this before and told me that the only other alternative to Dilantin (my anti-seizure medication) was a drug called Tegretol which he could not recommend because of its non-time release quality. My doctor and I decided that maybe whatever caused the seizure had perhaps subsided, as the cat scans showed him nothing and he could not determine any reason for my Grand Mal seizure. I wanted off of the medication because I thought it was causing my mood swings. The doctor agreed to let me try, without giving his approval, to keep him out of any liability. He suggested that I slowly wean myself off of the medication. I did. I had another Grand Mal seizure, while driving with my girlfriend. We were fortunately at a stop light, and she called 911. I was again in the hospital with virtually no memory of what happened. My car was impounded and I had to go and retrieve it after paying a fine.
My hospital bills were staggering. I was barely able to pay my rent, so I let other bills go by the side. I was losing more work due to the fact that my mood swings were stronger than ever and people simply did not want to work with me. I am a freelance film professional. This was pretty much the last straw for my fiancé and she decided that the marriage was off. Still I drank between four and six Diet Cokes a day.
Eventually, my doctor told me that Tegretol had come up with a new time release formula and that we could try it. I was to wean myself slowly off of the Dilantin and start taking the Tegretol. I was certain that the Dilantin was not only causing my mood swings, but also making my mind fuzzy, unable to remember what thing were called that I worked with every day. So I switched, I told my prospective employment contacts that I had a new medication and to give me a new chance. They did, because we had worked together for years prior to my seizures and subsequent mood swings.
This was going on at about the same time that another thing was happening which I thought was completely unrelated to the seizures. I have always been an excellent athlete. I played soccer in high school and went on to play “league soccer” my whole life. I had just helped bring this new team that I just joined into the finals of the league playoffs. What I have lacked in skill over the years, I more than make up with speed, endurance, and tenacity. I am a runner and love to run hard and could always out run and overtake my opponents. I came into the third season with this same team and all of a sudden, I started to cramp and pull muscles during the game. I bought Bengay for the first time in my life. I started taking potassium, eating bananas prior to the matches, and slowly warming up and stretching for hours before matches. I would sit out a game or two hoping to heal, but to no avail. I remember playing hurt, with four or five pulls or strains at about 30 percent, of my capacity.
I gave up on that season and took the off season to heal. I started to run after about four weeks of rest. I would stretch and I went to see a sports medicine doctor, who helped me rehabilitate under has care and guidance. I started running full stride just weeks before the season and felt great. In the first game of the season, oiled up with about a tube of Bengay, having stretched and warmed up for about two hours, I started pulling and straining muscles fifteen minutes into the game. I was pretty sure that with age comes problems like these. I was forty-one at the time. I still went out and played out the season, but in severe pain and usually could not go for more than ten minutes without everything cramping at once. So two seasons of soccer, were ruined and things did not look very bright for my future in this sport, or any sport for that matter.
Well, the new improved drug Tegretol was in my system and I was determined that the old drug was the cause of my mood swings. I made a special effort at work to show my coworkers, THE NEW ME. I had a new girlfriend who understood what I was going through and things were looking up.
One evening, we were at the movies watching Bowfinger, I think that was out about two years ago in first release, and I received a page from my coworker: the friend who has stuck with me though all my various problems. You have to understand how difficult it was to even have problems of any kind because I was always the one who was in perfect health who never had a problem that would bleed into my work. I walked out of the movie and answered the page. My coworker told me that I had not changed and that he could not use me or recommend me anymore. I was hurting his business by being on the set and disrupting things with my mood swings. I told him that I thought I was a whole lot better. He assured me that I was not. I was devastated. He had given me at least one more chance to prove myself and I failed. He said that he remembered the old Mark, and wished that he was still around.
I remember getting work a couple of months later, on the set of, Walker, Texas Ranger, as what is referred to as a day player. That is when you come in and help them out because they have two units shooting in two different locations and they need more help. I was pretty down about losing a my friend’s confidence and all the work that he would help me get. I remember standing there chatting with a coworker, drinking a Diet Coke, telling him that I didn’t know what I was going to do to effect change and get my career moving again. He looked at me and simply said, “MARK, MAYBE, IT IS THE DIET COKE”.
Well, I was grasping for straws at this point in my life. I was financially ruined, due to lack of work. I was not able to play soccer, due to my muscle pulls, strains and spasms. My mind was fuzzy and I could not remember things or relate well because I was always search for that one word that I couldn’t find. I had lost the woman who I wanted to marry. I still did have this new girlfriend who was very supportive. I looked at my can of Diet Coke and spoke to it, ” NO WAY”.
I got home threw out my Diet Coke. Since, neither I nor my doctors could figure out what was wrong with me, I figured that I would give deleting Diet Coke from my diet a shot. I was still convinced that the medication was responsible for my ills, mood swings, but neither I nor anyone on earth that I knew or saw could explain the seizures.
I did try to wean myself off of the two different medications on about five different occasions during the three years that I was taking the anti-seizure medications. All of these times were without my doctor’s approval. I knew what he would say if I told him what I was planning on doing. I wanted to be free of the medication so bad that I thought, each time that whatever caused the seizures had subsided and I would be free off all the bad things that were happening to me as a result. I slowly, and ever so carefully tried to wean myself off the medication each of the five times and ALL five times, I had seizures, or near seizures.
What is a near seizure? A near seizure is driving, and ending up or waking up, thirty miles from where you started in a part of town that you would rarely go to. I remember pulling over to the side of the road and grabbing three Dilantin and swigging them down with my trusty Diet Coke and waiting on the side of the road until I could feel safe.
A near seizure is driving to a small town, where you are to stay in a motel, stopping at the motel you are supposed to go to and asking the clerk if he had ever heard of the motel. I know these two incidents sound normal, but the sheer terror of not knowing where you are or why you are there, is what I refer to as a near seizure. It is, like you concentrate as hard as you can and still you cannot comprehend what the heck is going on. It is a memory eraser. Of course I thought that the seizures for partially responsible for my short term memory loss as well as the medication.
So, here I was, at the end of my rope. I gave up Diet Coke cold turkey. I experienced severe headaches and went back to drinking the Diet Coke for a couple weeks, but a tiny voice told me that I needed to suspend drinking the Diet Cokes for life. In my heart, I didn’t believe that tiny voice, for I loved and cherished my Diet Cokes.
People are downright serious about their Diet Cokes. I know that I was: I remember being on a job, a couple years back, where the person known as the Craft Service person, he or she provides the snacks, drinks, and usually some sort of breakfast, did not have DIET COKE! I was angry, upset, and could not understand why she did not have it. I let her know it specifically, just what a major infraction this indeed was. I have spoken with her recently, and she said that I was not the only one who would get irate if she did not have a particular food or drink item. She did tell me: it was almost always the Diet Coke drinkers who rant and rave and carry on like spoiled children when there is no Diet Coke present first thing in the morning, or God forbid: she runs out. She said it was much worse than coffee drinkers are when they didn’t get their coffee right away.
So, I totally stopped drinking the Diet Coke and missed it terribly. I had to check it off of my list as a possible culprit responsible for my seizures, mood swings, and muscle problems. My life had change so drastically that I was willing to try anything to salvage what I could from the ruins, to even give up: DIET COKE.
One month passed, and the only thing that I noticed was that I missed Diet Coke. After two months of this craziness, I decided that I would attempt, once again to slowly wean myself off the Tegritol, my anti-seizure medication. I was in a hurry to see if dropping the Diet Coke was doing any good at all. After all, if it was not doing any good, then I was depriving myself of the my drink of choice. I still craved it and watched with envy, others sipping away at the delicious sugary bubbles.
One week passed. No seizure. Two weeks, a month! I had weaned myself to one quarter of one pill per day. I was prescribed to take, three pills a day. After sixty days, I went in to see my neurologists and told him that I had stopped drinking Diet Coke, which he could have cared less about and that I had weaned my prescription down to one-twelfth of what he had prescribed that I should take to avoid having seizures. He was not terribly thrilled to hear that either He said that I should immediately discontinue taking the Tegritol all together, because one fourth of one pill would have the effect of a placebo in my system. The therapeutic dosage was to keep me in a safe level to keep me from wanting to do what my body wanted to do: seizure like crazy.
He thanked me for the years of patronage and released me from his care, telling me that if I ever experienced even the slightest feeling of a seizure coming on, to call him. I had almost a full bottle of Tegritol left, just in case, I had a seizure. He wrote a letter, at the request of my insurance company six months later, after calling me and conferring with me that I was still seizure free, stating that I was no longer in any immediate danger of having another seizure, as I was trying to bring down the high cost of my health insurance policy. Of course, my insurance company could have cared less, because they did not grant me a lower premium.
After the two Diet Coke ‘free’ months, I was beginning to feel calmer, less irritable. I called my coworker and friend who had given me so much work in the past. I told him that I felt kind of like the Mark of old. He was leery and told me that if he brought me back for one more project it would be back to the beginner level and that I would be given one more chance. He said that was a big if and he would have to give it a lot of thought. He said that he didn’t have anything at all for me right away. Three months passed, four, five, and six!
I was finally rehired my by friend on a small job. Everything went well. Over the next couple months he hired me cautiously on small jobs at the beginner rate. It was not enough to live off, but it was start and I had a couple other odd jobs to help me get through this difficult time.
Soccer season was beginning again and I was called to play. I cautiously said that I would give it another shot. I came out and practiced, ran and did well. Of course, I rubbed down with Bengay, and stretched for an hour before each practice. I came into the first game and was able to play a full game, pain and injury free. I was not missing my Diet Coke any longer. Much of what I had lost was slowly coming back to me. I played that whole season, injury free, still using my pre-game routine and Bengay.
My work was picking up. I started to remember people’s names again, what things were called that I worked with and more importantly I was getting back memories that I hold so dear and of which had left me for a while. My sentences were getting clearer and I started to feel less brain fog. I felt naturally more understanding and felt literally like I was starting to become myself again. I started to realize that NutraSweet Diet Coke had single-handedly affected my life and changed it for the much worse.
It has now been over two years since I gave up the Diet Coke. Just as it takes away parts of you in this slow way, it gives back the thing you lost as NutraSweet ever so slowly leaves you system. I think that it took the longest time to leave my brain and maybe it took the shortest time to leave my legs. I am not sure that the NutraSweet is totally out of my system as I still feel clearer each day and almost everything has returned to my life as it was before.
I am proud to say, that I alone cured myself, by listening to that coworker who said, “Maybe it was the Diet Coke”. I cured myself by listening to that little voice inside me, that cried: FOUL, when I was trying to decide whether I should consider to give up a drink that I was quite find of. My doctors were miffed, my life was in shambles, but I figured it out by GOD! I am not an epileptic. I have not have even the slightest twinge of a seizure on over two years and I have not taken any anti-seizure medication, for almost two years.
I can play soccer, and run like the wind. I have not opened a tube of Bengal for over a year. I seldom warm up for more than ten minutes. AND I have not pulled a single muscle for over two years. My team has once again made the playoffs two years in a row, and we even moved up a division. Something that this team has never done.
I am working more than I ever have with more doors opening up every day. My friend and coworker looks at me as he did before I took my first can Diet Coke and guzzled it down. I am back to my upper skilled higher paid position and I am looking forward to greater leaps in the next year. My mind is clear. I was always known to remember every little detail and once again I can and do and have back some memories that I thought I had lost through the Nutrasweet induced fog that I have lived through.
So, now where does that leave me? I want to make sure that this substance is removed form our shelves.
Meanwhile I can tell everyone that I know to stop drinking this stuff. If it doesn’t get you one way, it will find a way to invade your life and steal from you. I promise that, from personal experience.
Nutrasweet works slow, so very slow, that you don’t notice the changes, until you are affected in some consequential way.
I have read some documentation on all the ailments, problems, and effects of Nutrasweet. From reading all of the available literature, I feel lucky, that things were not any worse for me; unless I have some Aspartame full, festering, brain tumor ready to explode. Most of the data collected and studies done do not mean much to the average consumer. One can get lost in all of the controversy, but I know what Diet Coke did for me.
I DO NOT WISH, WHAT I WENT THROUGH, ON ANYONE.
Please forward this letter to as many people as you know. It is time to put an end to this. If the people speak out <by boycotting products laced with Nutrasweet and do not want to be affected by this any longer, then the manufacturers will have to listen and effect change.
Thank you,
Mark Long