Yesterday was a good day for me in a series of bad days. I realized that it has been two weeks since my pain level has been at its baseline of 5/6. It's been 7/10 or more for the last several days. I've tried injections of Toradol and Vistaril and I can go up to twice a week as an outpatient. I had one day that the injections worked for about two hours and the next day, it didn't do anything at all! There doesn't seem to be a whole lot that helps for any length of time. Relief is temporary at best. I feel really tired although I don't have any reason to be sleepy. I have discovered that Halcion, Benadryl(Otc), and Zanaflex at bedtime works well for knocking me out for several hours. I don't gradually fall asleep. One minute I'm awake, the next, I'm out like a light. Then, I'm unconscious for 8-10 hours or so. I do not have a drug hangover either. I usuallly don't have  a problem falling asleep. It's staying asleep that's the problem. If I don't have sleep aids, I sleep for about 4 hours max and then wake up. At that point, I'm wide awake and can't fall back to sleep. Feeling sorry for myself today. Sick and tired of being sick and tired!!

We don't have a lot of friends near us, and when my husband was employed (as a pastor of a congregation), I got a lot of crap for being "picky" about food at pot luck dinners and such. It got old, but I got used to it - I'm not going to make others feel happy for 5 minutes to feel horrible for 2-3 days and get cancer down the road. Most of my friends live quite a bit away from us, but they've been super supportive of the whole celiac/GF thing - sending articles, connecting me with other friends of theirs with celiac and gluten issues, etc.

One of my longest-held friends sent me a surprise package for my birthday. I've gotten to the age where the focus isn't really on the adults anymore since there are kiddos in the picture, so I had NO idea what this package was yesterday from carbsmart.com. I had my husband open it, and inside (with a label from glutensmart.com) I found this:





I haven't opened it just yet, but from what I can see on the outside is:
Mrs. Mays black sesame slow dry roasted snack
Edward & Sons 8, 8oz servings of Miso-Cup golden vegetable soup mix.
Glenny's brown rice chocolate marshmallow snack (rice krispy thing)
Another Mrs. Mays snack bag.
Gere G Wheat Free Crackers
Glutino pretzels
Arico almond (something I can't read) Gluten Free cookies
Gluten Free Dreams Chocolate Cake Mix
Road's End Organics Gluten Free Dairy Free Penne & Cheese Cheddar Style Organic Pasta Dinner
Enjoy Life no-oats "oatmeal" cookies
Gluten Free Pantry Chocolate Truffle brownie mix
Something that looks like rice cakes but with corn on the label - popcorn cakes?

All in a cute kind of breakfast-in-bed tray/basket... and a stuffed puppy =)

I'm super excited to try these things. We're planning to move very soon, so I'm leaving it sealed up for now so that I have some GF instant foods at hand while we're still stocking groceries and pantries and finding GF options in a new town. But it was just so awesome to know that someone cares enough about your health stuff to make your birthday extra special! That, along with my husband making a GF birthday cake for me this year (he was too nervous to get me sick last year... so I made my own) - it's been a great day =)

yep, this officially sucks.

migraine has not abated since yesterday. got a little better, i think, but maybe that's only b/c i was sleeping. my brain and body are still almost entirely offline. i talked to a nurse at my neurologist's office, who says i can only take 1 more axert before i've reached my max for a 24-hour period; which is fine really b/c clearly they are not very effective at the moment anyway. so i'm supposed to do that, then if it doesn't kill the migraine cycle, go to the ER for the IV drugs as i got lectured for not doing last time this happened.

which is a whole new set of problems, b/c i can't drive myself to the ER as they won't give me any sort of anything until i have someone to drive me home. i don't actually know that many people who live close by, and i feel uber-guilty about asking anyone to interrupt their friday night plans to spend time at the ER with me as it is sure to be an ordeal. i don't want to do it myself, and i'm the one with the migraine, so i can only imagine how irritating it would be for someone else.

sooo...kind of stuck between a rock and a hard place here. maybe i will just take the triptan again, and it will work, and none of this will even be an issue. maybe.

Hi, I am new to this community. I have suffered from random migraines for several years off and on. About 16 months ago, the headaches became a permanent part of my life.I have a continuous headache every day that does not vary much. If anything, it gets worse instead of better. I have had S/P ACDF of C6/C7 a year ago which did nothing to alleviate the headaches.  I've been to the Back and Pain Center and they told me that I was noninterventional and they wouldn't even address my headaches. In April, I went to the Diamond Headache Clinic in Chicago which resulted in an increase of 10 meds as preventative and abortive. After two months or so of being so high that most of the time I wasn't aware of what was going on but I was still in severe pain, I chose to stop all meds. I've also been to neurologists who flat out refuse to treat my headaches! I am currently taking Bystolic, Indocin, Zanaflex, Halcion, and Benadryl. I do not go to the ER any more since I've been accused of being drug seeking. For those of you out there who have had the same problems, get your primary physician to write you a letter of the protocol that he wants followed so that you can show it to the ER doctor. I usually have Benadryl, Compazine, and Toradol which is the standard  "coctail" for migraines. I do not tolerate pain meds since I get rebound headaches within a matter of hours. I'm still seeking answers for the cause of the headaches. I guess that at this point, I'm not ready to accept that this could be a permanent part of my life. It's great to see others that know what it's like to deal with the pain every day.

does anyone else experience increased urination with migraines? i've noticed that whenever i get a full-blown migraine, i have to pee every 15-30 minutes. it's really annoying, considering the pain and general other blah going on as well.

It's raining here in PDX, so I'm gonna go get some coffee and hang out at Powells for a while. It's funny, but there wasn't a whole lot to do when it rained in Bend... huh.

I have two questions.

Has anyone taken Depakote, found that it worked but that the side effects were intolerable, and then went on to find a drug that DID work? If so, what drug did the trick? Wait, did I already post that question?

Anyway, my other questions is about daily abortive use. I've getting to the point where there aren't a whole lot of preventatives left to try, so I'm wondering if daily abortive use is in my future. (I get daily migraines, no matter what I do or don't do. Have for years.) To those who already use abortives daily, how long have you been using them that way? I'm concerned that they might stop working.

Thanks, everybody.

Thanks to all who were able to Donate to the Celiac Research Center and those who offered words of support and encouragement. I finished the New York City Marathon (my first ever) in 4 hrs 37min and 31 seconds.

This is what it looks like when a Celiac finishes the marathon!



To think that 2 years ago I couldn't make it through the day without needing a serious nap!

My doctor filled out my FMLA paperwork for me, including honestly answering the question about frequency and duration of absences due to flare ups. "Unable to estimate random flare-ups"

Yaeah.... the bean counters don't like that I have to take it BACK to the doctor to get some sort of estimate with actual numbers in it. Meh.

On the plus side, I found and iPhone app called "is that Gluten Free?" It contains very similar information to the Triumph Dining grocery guide, but is a far more convenient form. $5.99. I think it will be worth it.

I'm not really sure of the difference, so I'm just going to say, for those that have been officially diagnosed with Celiac by biopsy, do you find that you get headaches/migraines within hours of ingesting gluten?

I keep getting these headaches and I think they are related to accidental glutening. I've never intentionally glutened myself after being diagnosed, so I'm not exactly sure what my symptoms are.

Also, I apologize for being exclusionary, but I would like experiences for people with the same level of diagnosis that I have (since allergy, sensitivity, and celiac are different forms of gluten response).

I'm at the express care right now. And I'm certainly not complaining about what they did give me, I'm just curious - those of you who do have a care/ER plan, what do you do when the doctor you're seeing doesn't want to go that route? My neuro has me getting 2mg each of ativan and haldol via IV but this doc today (and I've seen him before too) doesn't do IV stuff and never uses these meds for migraine. So I've gotten phenergan/dilaudid IM and solumedrol IM - which is fine because the pain was unbearable. I just wish I could have gotten at least the ativan too. But that's okay, I'll take some soma or valium when I get home

Halloween was fun. I was a paramedic (staying with the healthcare field theme). Boring? Yes. Free costume (courtesy of yang)? Yes. Short skirt? Yes. And I save lives, so you can't really beat that.

Also, two big events. #1: I made soup in my crock pot, and I'm super stoked to eat it tonight. #2: I'm going to seattle to visit Beth and Matt this weekend. That's right, I'm actually doing something on a weekend other than working! Very uncharacteristically Zoe. I haven't been up to Seattle in years, so it will be nice to visit. I might be more excited for the soup, though, but we all know that is only because I have issues. With food....and stuff.

Saw the most amazing thing at safeway last night. Two very large women were in line buying their groceries. Said groceries consisted of: value packs of Ramen noodles, a gallon of ice cream, candy bars, chocolate syrup, white bread, and other foods that represent that part od the food pyramid from which you're only you eat "sparingly." One of them noticed a travel size of Bayer aspirin and ended up buying that as well, as her doctor had told her it would be "good for her heart." Oh, the IRONY.

Plans to move to Canada are coming along nicely.

I need to go to the ER. I've been needing to go for days but my parents are in Australia and I just feel guilty about asking someone to take me because it's an HOURS ordeal. So now, I definitely need to go, even if it's just to get a stronger pain killer and steroid instead of what I normally get.

I should go. I need to go.

But now I need to work tonight for a couple hours.

I just don't know what to do at this point


EtA: friend is coming, should be here around 245 (still a time to wait, but still, its something). I need to not feel guilty about this. I never thought I'd be the one to say "I can't wait for my parents to get home"

I just went to Zpizza in Alexandria today for the first time and I was both pleased and shocked to find gluten free crusts AND vegan cheese available. I got a small GF crust w/vegan cheese pizza (to really taste it) and it was great. Whatever brand of cheeze they used was nice and melty (I am going to ask later what it was, kinda forgot at the place in my joy at finding tasty food) and the crust was thin and nice and crispy. Wasn't a Still Riding Pizza crust but very similar.

90 mins later feeling fine and completely not-glutened.

...and even better, they deliver. I'm sure you all know the feeling. I haven't had pizza delivery in the 9 years since my diagnosis.

edit: fixed html fail ;)

So we were assured the other day at a local fish & chip shop that everything she cooks with is gluten free. Mum was excited, I was excited, so I tried a few chips and, wow, yeah, I couldn't taste the batter like I'd been able to at any of the other shops in town. It was fantastic!

That night I was in excruciating pain. I'm *still* in excruciating pain, and the typical signs of a gluten attack have all been happening.

Oh, and the chips I ate that day? My Mum got boxes from the store owner as we're in the midst of moving to a new house this coming week, and the boxes for the chips say they've got WHEAT on them. *headdesk* Nice to figure these things out after the fact, eh?

But, hey, at least I know for certain my reactions aren't psychological now, unlike what a friend of my Dad inferred the other day.

Although, that does bring me to a thought I had late last night. For about 36 hours after the onset of the attack? My head was in SUCH a foggy state. I remember always feeling like that through the years, but never contributed it to gluten before. It's amazing the things you notice from gluten consumption after you've gone GF for such a very long time.

In the meantime, I've taken some paracetamol, a ginger root extract tablet (great help to digestion, but also works wonderfully as a natural anti-inflammatory during these attacks) and am hoping things will quickly calm down.

This was a good lesson, though. The lesson being to only eat (and trust) the oven wedges and french fries I cook in the oven at home :)

I just assumed my ceramic or porcelain crock couldn't hold gluten. But I'm trying to find all sources of CC. Am I wrong? Do I have to replace that too? :(

My treatment plan has been going quite well these past few months. My migraines have gotten much less intense and much less frequent. My neuro is thinking we will start tapering off my preventative after our next visit, yay!

However, when I saw my gyn yesterday she expressed some concern about my being on hormonal birth control containing estrogen, because my migraines sometimes include aura. She said she believed that was contra-indicated. Can anyone speak to this issue, or better yet, provide references?

Many thanks.

Am noticing lately that I no longer hum or sing. Am wondering why. Am missing piano.


I have decided that I'm going to move to Yellowknife in the Northwest Territories of Canada. I know, why is Zoe moving to Canada when she hates the Canadians? I'm not sure, but somehow, I have a desire to move to this semi-arid climate with averages of -30 degrees in the winter and a population of 20,000 people. You can observe the northern lights--something I've always wanted to see. Ill work as a secretary for one of the diamond mines. Yes, there are diamond mines! OH, and Les Stroud, host of Survivorman, is from there, so maybe ill get to see him! I'll take a picture. I hope to pick up a genuine Canadian accent and marry and Inuit.

Hannaford in the Organic section (though the organic section is near the italian section in my local Hannaford)

"Rustic Crust" brand wheat free, gluten free, dairy free pizza crusts. They are "boboli style" and are 8" crusts. They were hanging with other Non-GF packages of the same brand.

I'm a fan of Bob's Red Mill pizza crust mix... but only if I'm making pizza for a bigger crowd. If whipping up pizza for just me it is a bit too much hassle. This looks very promising.