Saturday, April 30, 2011

My sweet tooth nearly killed me

Okay, so the title is a huge exaggeration. I didn't nearly die...though some days I was beginning to feel like it! But, I want to explain my absence lately and needed a catchy blog title! This is not a post related to yarn or fiber or knitting or crocheting or spinning. It's simply my story of the past 8 months. Maybe someone out there, with Google at their fingertips and a killer headache, will find this helpful. And, maybe you'd just like to know why I haven't blogged since New Years!

Last August, not long before school started for the girls, I got a headache. No biggie, right? Well, two weeks later it was still there. The. Same. Headache. No relief. So I visited my doctor. He gave me a shot meant for migraines (Toradol and Zofran) and sent me home. On my way home (a 30 minute drive with a pit-stop to pick my 4yo up from a friend's house), I got loopy and tired and felt absolutely horrible. And worse, my headache was much worse. After a couple hours, I called the doctor to see if my reaction was normal (they'd assured me that it didn't cause drowsiness and I was fine to drive, so I thought not) and to find out how long it would take to kick in. Their response was that no one EVER reacts that way (later got a letter from my doctor that he'd consulted several of his colleagues and NONE have ever had a patient react as I did..though a quick Google search tells me it's a common side effect) and that it should have kicked in within the first 20 minuetes. "Is it not working?" the nurse asked me. Um....no? Why would I have called if it were? They told me to give it until morning and call back if I still had a headache, which they said they were certain would be long gone by then.

Of course, the next morning, the headache was still raging, so I called back. They didn't want to prescribe anything else until I'd had a CT scan. Thankfully, they got me in right away and the CT scan was clear, so they then prescribed me something else. Tramadol. This time it was a pill, so I was able to get home, order some pizza, and then pop a pill. By the time pizza had arrived and I'd had a slice or two, I was beyond loopy. I could barely put a full sentence together and felt faint. I walked the kids across the street and asked my neighbors if they would babysit all three of us. They took one look at me and offered to call an ambulance. I was pale, groggy, and unable to think clearly. I declined the ambulance and asked them just to let me sit with them in case it got worse. At least I could relax, knowing my kids were safe. (If you recall, my husband was in Afghanstan, so the girls and I were on our own.) Roughly 4 hours later, I perked up. I was better able to follow conversations and began joking around and enjoying my visit. They could tell I was feeling MUCH better. I thanked them for babysitting me, and the girls and I returned home. I still had my headache (it had gotten worse again after taking the Tramadol) and it remained worse for a couple days.

Honestly, I don't remember what happened next. I'm pretty sure I let my doctor know of my reaction, but I don't remember going back to see him right away. By this time my husband was on his way home for 2 weeks of leave, and I thought maybe the headache was just stress. It HAD just started right before the crazy back-to-school schedule, so I thought maybe having him around would relieve the stress and the headache. I even planned a weekend away at a lake with a couple friends while he was home. After my trip to the lake ended without relief, my husband went with me back to the doctor. It was then that he decided it was likely upper back and neck strain (I have a bit of weight to lose and a more-than-ample chest, so my back, neck, and shoulders are always tight). He prescribed a muscle relaxant and physical therapy.

Mr. Yarnworks returned to the war and I dutifully went to PT 3x a week for 6 weeks. While I enjoyed the massages, they really didn't help the headache. Exploring my options, I also visited an eye doctor for the first time in....well, in my adult life. I'd felt that my vision was getting worse, but had avoided the eye doctor, so with the headache, it was time to go. Verdict? 20/20 vision....but it COULD be corrected to 20/15 if I wanted. So I got glasses. They greatly help with road signs and such, but didn't help with the headaches. So at least I ruled that out. The eye doctor was also a bit concerned about my field-of-vision test, which showed a blip on each eye where I couldn't see. The same spot on each eye, just mirror image. To her, that screamed of a pituitary gland issue.

We're now into December.

My regular doc scheduled an MRI and shipped me off to a neurologist. Here's where you can see my desperation. I actually HOPED it was a pituitary tumor (almost always benign). At least then I'd have a reason for this stupid headache and a solution! I read the list of symptoms and so many fit not only my headache, but a host of other symptoms I'd written off as part of getting older.

When the MRI came back perfectly clear, I was so disappointed I cried. Four months of the SAME headache, and we were no closer to finding a cause or a solution.

My neurologist put me on Indomethacin. After 4 doses (a day and a half), I got a small rash all over the inside of my arms and stopped taking it. The day after I discontinued the Indomethacin, I felt terrific! The headache wasn't gone, but the mental fog and the depression that had followed after months of this same headache lifted. The headache was noticeably better and for the first time in months, I could actually THINK. I don't even think I'd realized just how much the headache had affected me other than the pain. Over the course of the next week though, without being able to take more Indomethacin, the headache returned. The neurologist suggested a couple other drugs, but both had side effects that I decided I wouldn't risk while home alone with my children. (Topamax and Imitrex) Since medication was the only thing the neurologist was interested in discussing, I was on my own. A friend of mine suggested trying the Indomethacin again (the one that gave me a rash, but helped the headache), but to lower the dose to see if I could get the benefits without the rash. It worked. I was able to start with a half dose and work myself up to a full dose and never got the rash again. And my headache, while it never went away, was at a MUCH more manageable level and I was able to function again.

Now, I'd been on a diet before the headache started, but when the headache was in full swing, I fell off the wagon. I could barely think, let alone calorie-count and measure and weigh food. I'd regained everything I'd lost. Now that I was functional again, I decided it was time to get back on my diet. Maybe losing some weight would help whatever was causing this headache, right?

Well, after losing just a few pounds (with many more to go), my weight-loss stalled. I was exercising. I was eating right. There's no way after a month or more of dieting again that I should be losing less than half a pound a week. So I decided to give up my Diet Coke. I'd read that artificial sweeteners could actually lead to weight gain. And that they could lead to overeating, cravings, and all kinds of weirdness. Giving up my Diet Coke definitely wouldn't hurt, and just might help. I didn't give up all artificial sweeteners, just the Diet Coke.

Here's where the magic happens.

Not quite putting two and two together yet, I started trying to wean myself off the Indomethacin, and was able to completely wean myself off within a couple weeks. Yay! I still had my headache, but it wasn't horrible and I was still functional. I don't like being medicated as a general rule, so this was good.

A couple weeks later, I had a stressful week. I grabbed a 2 liter of Diet Coke and had a bit of a binge that led to a couple more 2 liters over the course of about a week. And my headache returned to a point where I needed to go back on the Indomethacin. This is when it finally dawned on me. It's the freakin' Diet Coke!

Now, this isn't the first time the evils of artificial sweeteners had crossed my mind. Aspartame has lots of (at least anecdotal) evidence of causing migraines. And back in the fall, I'd given up Diet Coke for a week without seeing any benefits, so I'd ruled that out as a cause. But, as it turns out, I didn't give it long enough. Reading up on the topic, it looks like it takes 30-60 days to get out of your system. Plus, I'd only really given up Diet Coke (both times), but being on a diet, I was consuming TONS of other stuff with different artificial sweeteners in it.

So I swore off all of them. Easier said than done. They're in toothpaste, medications, and just about anyting labelled "light" or even "healthy." Ugh. The idea is to get rid of all of them, hopefully totally get rid of the headache, and then try the different types one at a time to figure out which ones I'm sensitive to.

It's been a month now. No lowfat yogurt, no diet desserts or 100 calorie packs, no diet soft drinks, no Crystal Light, etc. I kept the toothpaste. There's really not a good alternative and at least I don't swallow that, right?

I've had two oopses.

First, about 2 weeks in, I woke up feeling great. I still had the headache, but just barely. Nothing that really bothered me. It was the first really great morning in a long while. Maybe even my best since this all began. I merrily woke up, got the girls ready for school, ate some breakfast, and ran out the door. About 30 minutes later, WHAM! What the heck?? I started trying to think back to the things I'd eaten to see if I overlooked an artificial sweetener somewhere. That's when it dawned on me. I'd had instant oatmeal for breakfast. I'd grabbed a packet without paying attention. It was "weight control" oatmeal. I checked the label and sure enough, sucralose (Splenda). Crap. So, it looks like not only aspartame (Diet Coke), but sucralose is also out.

Second, I'd had to switch my Northern Lite Latte at Caribou (very yummy btw if you can tolerate artificial sweeteners) to a regular full-sugar flavored latte. It's a treat a friend and I have after we work out. With only an extra 50 calories, the full-sugar variety is also very good and still isn't calorically horrible. But just yesterday my latte tasted a little weird, so I didn't drink the whole thing. And on my way home, the headache began. I'm guessing they used the sugar-free syrup by mistake. Their syrups are also made with Splenda.

So my headache isn't gone. In fact, it's still pretty bad from yesterday's incident. But I think we FINALLY have an answer. I just need to get more diligent in my label-reading and while eating or drinking out. I now have a cheat sheet in my phone of 21 different artificial sweeteners since I'm trying to avoid them all....even "natural" things like Stevia. It's not easy though. They seem to be hidden just about everywhere. But, with luck, this is it.

Of course, I have a HUGE sweet tooth AND I'm trying to diet. So I have no clue what I CAN eat anymore. After demonizing sugar and calories for so long, it's hard to go back to the real thing, especially while trying to lose weight. But I'm muddling my way through.

Mr. Yarnworks is returning from Afghanistan NEXT WEEK! And summer break is coming up. So the headache is SURE to go away completely very very soon, right? Please??

10 comments:

Libby said...

Awesome self-diagnosis! Interesting (and saddening) that your doctor never suspected an intolerance or allergy. You might look out for MSG too, that stuff gives me headaches.

I know fruit doesn't sound as good as chocolate, but it is spring, and there will be lots of great fresh produce soon! Good for your body, good for your headaches, and good for the diet. also, a little bit of honey goes a long way.

Good luck!

Susan Liber said...

So sorry about your headache. Many years ago, I was having terrible headaches too - migraines to blow the top of my head off and pop out my eyeballs. And it was diet soda. At the time, every thing was aspartamine and for me that was intolerable. I went many years without drinking soda except for a regular one once in a while. I was happy when Splenda came out as I did not react to it with a headache. (but my son cannot tolerate any artifical sweeteners at all either without getting a headache.) Now I can occasionally have aspartamine....mental pause has been good for something. I have only had 3-4 migraines since mental pause (menopause) finished. Excederin helps me now instead of Imitrex.

Good luck with your search for good food. I belong to myfitnesspal.com to track my food and wter and exercise. I have also found "natural" sodas with real sugar instead of corn syrup taste better and are lower calories....but water is still the best.

--Deb said...

I'd wondered why you'd been so quiet, and oh! This sounds like it was so scary (and exhausting), but I'm so glad for you that you figured out the problem! (With no help from the doctors, sheesh.)

Diet, or no diet, I always figure it's better having the "real" stuff in smaller portions than the "fake" stuff. (If you eat it slowly enough, a tiny amount can be remarkably satisfying.)

Have you considered seeing a nutritionist to help come up with a list of foods you can, should, and will WANT to eat?

skaro964 said...

I would probley add HFCS- high frutose corn syrup to you list also, I know it kicks in autoimmuine systoms too.

Puddytat purr said...

Ha! I have a very similar problem!

I don't like diet coke, but I used to be addicted to full fat coke - yes addicted! It seemed to be the only thing that would slake my thirst and I could easily drink 3 litres a day.

I developed psoriasis about six or seven years ago. About a year after, I gave up coke as part of an effort to lose weight.

Although I still have psoriasis, I don't rip layers of skin off scratching at it - well as long as I stay off the coke! If I drink a glass of coke; my psoriasis will be bleeding from being scratched within half an hour!

I might write a post as you have done - this info NEEDS to be out there!

Keep getting better hon xx

pia said...

Wow, this is really interesting! It's amazing what chemicals can do to our body. Have you checked out natural toothpaste like Tom's? I haven't, but perhaps it use a different sweetener?

Deborah Robson said...

I had a similarly long, complicated, and hard-to-diagnose six months (with about *two years* to clear my system of the problem). My difficulties were not headache but serious intestinal cramping.

The cause was . . . xylitol and sorbitol: "naturally occurring sugar substitutes." Xylitol, at least, is sold by the pound in health food stores. It's also in most "natural" toothpastes, and is touted as a decay preventive. It's also in most gums (almost all of which now seem to be "sugarfree"). Wikipedia says that symptoms are temporary and pass as the system adapts. Not in some cases!

How did I suddenly experience this? The manufacturer stopped making my favorite toothpaste, so I was trying new types. I was also traveling, so I was using Airborne tablets more often. They're mostly vitamins, but they are sweetened with sorbitol.

How did I track it down? It happened so suddenly and was so severe that I looked at my life and asked "WHAT'S DIFFERENT?"--came up with the toothpaste and the Airborne--and then "WHAT DO THEY HAVE IN COMMON?"

The "natural" sweeteners they include.

By eliminating the two sources of what I would think are almost negligible quantities of the stuff (I don't chew gum often), I could sleep again almost immediately. Yet it took two years before my insides got back (almost) to normal.
___

It's almost fresh strawberry season. If you pick really good fruit, I think you can train your sweet tooth to love it. Also check out fruit leathers at the health food store. Chew slowly to release all the sweetness.

Tonyne @ Unlikely Success Story said...

Holy cow Jackie. I had no idea.

Jane/WTKnits said...

I can so identify with this post. I am sensitive to multiple chemical preservatives and additives. What saddens me the most though is that doctors STILL don't look at food and drink as potential causes of illness.
I'm so glad that you've found out what's causing your headaches and are on the road to recovery. I now eat a completely organic diet, bake all my own food (which is tiring at times) and avoid all preservatives and colourants in food. It's hard but it's the price I have to pay to stay healthy. You might want to look into MSG and HFCS too.You can buy soda without aspartame and HFCS from good grocery stores for the occasional treat.

LeeAnn Schaefer said...

Wonderful post! I hope you keep feeling better and better! My nutrition and pathophysiology professor had this saying that the closer it is to nature (coming from the ground or an animal) the better it can be. She is a natropathic doctor and was very against artificial sweeteners. I wish you luck and if you find and tips or tricks for avoiding artificial sweeteners please let us know! =]

Once again, good luck and I hope you feel back to normal sooner rather than later! =]

LeeAnn