Migraines back with a vengeance

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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 11/22/2013 5:09 PM (GMT -7)   
For the last few years I have been able to control my migraines by topamax, then finding all my triggers. I was able to get off of topamax and seldomly got a migraine. A month ago, my migraines came back with a vengeance with frightening symptoms. I went to my neuro, and he said it was migraine related. It actually started when my grandfather, whom I was close to, passed away. I tried a new food that day, being goat. Within 20 minutes of eating the goat, a very small bite too, as I wasn't sure if I'd like goat. I didn't either! My entire left face went numb. That morning, around 6am, my grandfather passed away too. I'm not sure what to think, my other half, and neuro says it is migraines and stress related. I'm wondering if something else is up. My neuro also said to give up diet coke. Now, that seems odd to you probably, but simply I can't stand coffee and well diet coke is my coffee. I only drink 2 12oz cans a day too! Just enough to wake up. I do know caffine is a trigger past 32 oz (which would be 3 cans) for my migraines. I kinda ran an experiment on how many ounces it took before a migraine hit to see if my diet coke really was a problem. 4 cans, migraine. 3 cans and less I am fine. 99% of the time, it is just 2 cans for me. I have noticed I am fine when I wake up, but the migraines are daily afternoon around 3pm. Nothing has changed in diet. I normally drink diet coke around 6am, so I'm pretty sure it shouldn't be in my body 9 hours later. I tried cutting my diet coke, bad mistake, my migraines went to dull achy to so bad I wouldn't let my other half in the same bedroom. He made me drink diet coke again (guess he didn't like a cranky woman lol). And with diet coke my migraines went down to the dull achy kind that is more like a headache. I do have a tumor on my optical nerve, and it is within my eyes and bridge nose where the trigger migraine points is. I did a MRI on Wednesday, to see if it is going. I'm out of ideas, nothing expect for morphine and gabapentin is taking these migraines away. I refuse the morphine til my migraine is a 9 (1-10 scale 10 being worse) though. I seriously try all other things first. I don't like taking my morphine, I won't unless medically necessary. I don't want to be addicted. I'm allergic to aspirin, ibuprofen, alieve, Advil so I can only do tynonel. Does anyone else have any ideas on what is causing me to do this? I'm at loss, and I think something else may be going on.
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor, Bursitus

art_teacher_mom
New Member


Date Joined Dec 2012
Total Posts : 12
   Posted 11/23/2013 8:00 PM (GMT -7)   
What kind of diet coke do you drink? Is it the regular kind with aspartame? Those will give me an immediate migraine, however I can tolerate the Diet Coke with Splenda just fine. Maybe you could try that flavor and see if it helps?

I'm not going to judge you, because if someone said I couldn't have my ONE cup of coffee a day anymore, I think I'd morph into a crazed beast. :)
Me: Migraines.
Imitrex as needed, trigger-free diet. Can't eat any prepared foods, must cook myself from scratch

Wife to a great guy with UC for 21 years
Diagnosed 1992
He has been previously on:
Asocol, Llalde, Prednisone, CortEnema, Remicade, Flagyl, (the other antibiotic, can't remember), Apriso, VSL3
Remission 11/2012
Currently only:
Nicotine patch 14mg, VSL3, Gluten Free, dairy free

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 11/24/2013 12:12 PM (GMT -7)   
Yes, the aspartame one, mom. Had to look. I can try the other flavor. I wasn't aware of other flavors besides diet and reg and zero. I asked my dad (who drinks a case of diet coke a day) what he'd do if the doctor said to give it up he said "I'd tell the dr ok but whether or not I would do it is a different story". I see you cook from scratch? That is great, I would like to more. I'm trying to get away from all those chemicals in foods.
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor, Bursitus

razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 11/24/2013 1:58 PM (GMT -7)   
have you been checked for chiari malformation

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 11/24/2013 5:23 PM (GMT -7)   
No I have not razzle
~Moderator - Allergies & Asthma , Alzheimer's~
"The Walking Medical Mystery"/~Medical Caregiver and Doctors Worse Nightmare~/ DX: Lactose Intolerance, Gluten Sensitive, ADD, Fibromyalgia, Carpel Tunnel, Arthritis, Clasterphobia, Anxiety, Diabetes Type II, Grave's Disease, Tachycardia, GERD, PCOS, Migraines, UARS, Anterior Scleritis, Orbital Tumor, Bursitus

crescent30
New Member


Date Joined Jan 2014
Total Posts : 2
   Posted 1/25/2014 10:40 PM (GMT -7)   
Smurfy...sorry to hear of your difficult times...I have pretty good luck with topamax. You might want to look into a spontaneous cerebrospinal fluid leak. You seem to have a lot of the symptoms.

Do you or would you be willing to drink sweetened iced green tea? Coke is just all around bad :( Green tea can be steeped long to give equal or more caffiene and it's actually got great things about it....u can sweeten with honey and lemon then cooled on ice and it tastes great!
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