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Gluten-free diet

  • By Suellen

    I have chronic migraines for the last 20 years. My two main triggers are weather changes or falling or low barometric pressure and stress. Over the last year and a half my migraines have become daily and many unmanageable pain days, it is just a matter of whether I can function through or not. In February, I started a gluten-free diet, because I have become desperate for relief and have so few options left to help relieve the pain. To my surprise, I am highly sensitive to gluten. Previously my diet was 80% gluten, that is not an exaggeration in the least, I thought it helped my other symptoms of nausea and Gerd and eating lots of fiber to help my colon move things through because my pain medication slows things down considerably. After only a month, if I slipped up and didn’t read a label or just craved something with gluten in it, within hours I will get a very intense migraine. Even though I have established that gluten is a problem, I am still suffering nearly every day. I feel it is necessary to start eliminating other typical triggers that I did not think were a problem in the past. I am finding that it is very difficult to do though because as I mentioned this gluten-free diet has been a major life style adjustment for me. I also find it difficult to keep my headache journal because I am in pain, Everyday, which is depressing to look at and my two main triggers remain, so it is hard to say if it was something I ate or smelled or was light sensitive to as opposed to something I have eaten. Unfortunately, I am dealing with a lot of stress right now that I have no control over and with the arrival of Spring the weather is up and down, I live in Ohio. I apologize, I am mainly frustrated and whining, but I did want to share the fact that changing my diet even though my main triggers seemingly had nothing to do with food made a difference, as crazy as it sounds. My next step is to get a daith piercing and try to muddle through an elimination diet. I am currently taking many dietary supplements for migraine prevention. My biggest curse is being allergic to Many medications used to prevent or treat migraines including Triptan meds, Topamax, and seizure meds. The only pain medications I can take are Tramadol, Morphine, Diludid and Fentanyl. Living in Ohio with chronic pain however means, I am only prescribed Tramadol and it merely lowers the intensity slightly. I also receive Botox injections every three months, I am receiving the maximum dose allowed. This is why I feel I am running out of options. I have tried marijuana and did get relief with it, but it is not legal in Ohio, it is not a steady viable option. Thank you for reading, if you have any tips for easier journaling that you wouldn’t mind sharing, I would appreciate hearing them.

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  • By Nancy Harris Bonk Moderator

    Hi Suellen,

    Thank you for your questions. I’m sorry you are going through a difficult time right now. I know 2016 didn’t start out as good as I hoped for my family, so I understand. Let me see what information I can give you that may be helpful.

    I’m happy to hear you’ve been able to identify gluten as a trigger, many of us are sensitive to gluten and in fact we have information on gluten and migraine in these articles; https://migraine.com/blog/gluten-sensitivity-and-migraines/ and https://migraine.com/blog/gluten-and-migraine-is-there-a-link/.

    An elimination diet may be difficult but for some of us a necessary evil to determine what other food triggers we may have. You can read more about an elimination diet here; https://migraine.com/blog/elimination-diet-foods-to-eat-foods-to-avoid/.

    Keeping a migraine diary is one of the best ways to figure our our triggers and any patterns our attacks may have. On the other hand, it can be a bit exhausting to keep. Have you investigated any migraine apps that are out there – these can be a bit easier to use than paper and pen. Migraine.com has the Migraine Meter you may want to look into, which you can find here; https://migraine.com/migraine-meter/. Here are a few articles about keeping a diary that may be helpful too; https://migraine.com/blog/using-digital-journals/ and https://migraine.com/blog/keeping-migraine-diary-basics/.

    There is a lot of conversation about stress being a migraine trigger. It may not be stress that triggers an attack, but the things we do or don’t do during stressful periods. If we are dealing with additional stress, we may be more prone to skipping meals, getting dehydrated, eating trigger foods, and not get enough sleep. Add all these things together and attack may occur. You can read more about this here; https://migraine.com/blog/your-worst-migraine-triggers-stress-really/.

    I hope this helps,
    Nancy

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  • By Suellen

    Nancy,

    Thank you so much for all of the information you gave me, it has helped me a lot. I am REALLY struggling with my diet. Sticking to a cardiac, gluten-free diet as well as doing the migraine elimination diet is challenging. I think it is just going to take time to figure it out and decide what I can live with. I have identified other food triggers over the past month, I believe the hardest part of it all is I crave most of the things that are triggers.

    The migraine meter, will be the most helpful tool. I do not have a smart phone or tablet so I don’t have access to apps.

    Just being a participant in Migraine.com is a blessing. Again, thank you so much for taking the time to reply and give me so much useful information, I truly appreciate it.

    Suellen Wissinger

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  • By jns192 Moderator

    Suellen,
    It is good to hear back from you!
    Understandably your diet is difficult to abide by. The fact that you have identified food triggers is a great success. Just remember that it is okay to slip up every once in a while and if you have a craving, maybe you can have a taste of that food to satisfy it. However, when you really find yourself struggling to commit, just remember how wonderful it feels to be without a migraine and that eating a trigger food can potentially lead to hours or days of debilitating pain.
    We are always here for you whether you need support and encouragement regarding your diet or anything else that you would like to discuss.
    I also wanted to share with you a few other forums you might be interested in checking out:

    cutting out gluten: https://migraine.com/topic/cutting-out-gluten/

    the migraine diet: https://migraine.com/topic/diet/

    food cravings: https://migraine.com/topic/food-cravings/

    Thank you again for being a part of our community- we are luck to have you.

    Warmly,
    Jillian (Migraine.com Team)

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    • By Suellen

      Hi Jillian, I am in need of support and encouragement. I am so frustrated and stressed out right now. A little more insight on my personal life will be required in order for you to understand and help me though. Due to my illness and my limited income, I have lived with my daughter since my divorce ten years ago. She is almost 25 now, but also has a daughter of her own who is 17 months and her daughter’s father lives with us as well. My mother is still living, though my father died quite unexpectedly, but that was 20 years ago, but I do what I can to take care of her. She lives in a senior community. I am engaged to a wonderful man. We have been together for eight years now, but he lives in Ontario, Canada. He has four children, ages 15-22. He is a self employed contractor, so if we want to be together, it is better for me to go to him. Lastly, I had my fur baby, Joey, for the last fourteen years and he took such good care of me. Four weeks ago, I had to have him put to sleep because he was not doing well, having difficulty walking, getting up. Being in chronic pain myself, I could not bare the thought of him suffering, but I am still struggling with that decision and loss.

      All that being said, I just spent 17 days in Canada, out of all of them, I had only 5 days that I was not in getting, having, or getting over a migraine. And they were so much worse than I’ve been accustomed too. Prior to this discovery of a gluten sensitivity, I lived with chronic head/neck pain at a level of 3-5 every day. If the weather changed or I had added stress it jumped up to an 8-9 and I took my rescue meds and distracted my way through the rest of my day as best as I could or went to bed early.

      Now, I’ve had some days with no pain, but going from 0-8 is seemingly so much worse for me. My rescue meds are not helping and I am unable to distract and muddle through. These migraines put me down and out.

      The frustration is, I can not figure out what is causing or triggering my migraines. I am still working through the elimination diet. While in Canada, keeping track of my diet and the weather, it seemed if I ate ANYTHING other than a fresh salad, I got a headache. Foods I had deemed ok to eat while at home, were not ok while I was there. What I call my comfort food when I don’t feel well, ginger ale and gluten free ginger snaps, seemed to make my headache worse or that was my deduction because the weather was not a factor.

      I feel like I am missing something. Perhaps, an allergy. I will also admit my life and how I live it is quite stressful, however, I also do not see a way to change it. My fiancé will be moving down here with me after we are married, but that is going to take some time because he will have to find an employer willing to sponsor him because I can not because I am unable to financially. There is light at the end of the tunnel though.

      Also, I need to mention that my Neurologist will no longer give me the botox injections because he said I would have to have MARKED improvement this time around because it has been a year and a half that he has been treating me and he feels they are no longer working and wants to refer me to a pain clinic. Though he will continue to prescribe the Nameda he started me on as a preventative and Zanaflex at a dose of 10 mg at bed time and 2mg during the day. My PCP prescribes my abortive meds of Phenergan and Tramadol. I also take Ibuprofen and Benadryl with them (the Tramadol makes me itchy).

      While reading through the list of foods the can be triggers, I noticed the majority of them are because they contain histamines. Do you know if taking anti-histamines H1 or H2’s can be helpful in blocking the food histamines? For instance, Lorantidine or Formotidine.

      To add to my frustration, while I was in Canada and having such a rough time with my migraines, I started to get all over body aches, as if my whole body is on red alert constantly. And I was exhausted, but for no other reason than being in pain.

      I am back home now. The body aches continue, the migraine broke this past Sunday morning, that is how I was able to make it home. Though it was short lived because it stormed last night. I am crying, depressed, and so frustrated. I thought I had such a break through with the gluten discovery and perhaps the Daith piercing. But I honestly feel worse now than before I made that connection.

      I was reading here, looking for more answers and have found that a lot of chronic migraine sufferers take Amitriptyline. I remember taking that several years ago but was switched to Celexa. I have had the discussion with my PCP about not feeling as if it was helping as much. Adding Abilify to the Celexa was part of the reason I had an MI and went into CHF, so that is not an option, but switching could be and I thought I would ask my doctor about it. I am going to try to see her tomorrow (Tuesday).

      I appreciate just having the opportunity to get my frustration out. My daughter only sees my pain and crying, my fiancé feels helpless, and my mother swears it is ALL stress related and trying to explain any of this to all of them is not helpful for me. I apologize for the length of my ranting, but truly hope that it was somewhat insightful so that you can help me or point me in the right direction, because I am just at my wits end. My entire body is screaming at me to do something and I am at a total loss of what to do.

      Thank you so much, this means so much to me.

      Suellen

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    • By Suellen

      Jillian, My research skills were better today and I was able to answer my own questions regarding histamine in food and how to find out if it is a problem and what to take if I think it is.

      I have an appointment this afternoon with my PCP. Thank you again for just being here to listen, I appreciate it more than you know.

      Suellen

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  • By Nancy Harris Bonk Moderator

    Hi Suellen,

    Thank you so much for the update! I understand all too well about sticking to a healthy food plan – I’m trying not to use the “diet” Word anymore. I maintained a gluten free food plan for over a year. Didn’t see a huge reduction in my attacks, but had a bit more energy and my tummy felt better. Unfortunately, I’ve been slipping back into gluten land and my tummy is unhappy. I’ve got to get back to it.

    I did want to let you know you can keep a migraine diary the “old school” way – paper and pencil!! You can find a printable versions here; http://www.achenet.org/resources/headache_diaries/ and here’s one from the Michigan Headache and Neurological Institute, an excellent migraine/headache clinic; http://www.mhni.com/system/files/headache_record.pdf.

    Have a great day!
    Nancy

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  • By Jojiieme

    Since 18 feb, I’ve been on low food chemicals – what is probably called Failsafe over there, but here is just Friendly Foods – and I haven’t deviated. Tough for two weeks, but the difference was so dramatic, there was no point in cheating.
    For me it’s more than just GF. And I’m writing because Sue Ellen identified there were other food triggers.
    I got medical permission to try a small mouthful of cherimoya at the Seder on Friday night (to represent a new seasonal fruit). BIG MISTAKE.
    I’ve eaten them before, thought they were safe -no way! My tongue numbed and started to swell. Next day, biggest migraine, like being hit by a truck – complete with aura, vertigo and Alice in Wonderland stuff. Took 24 hours to go. Just like being poisoned!
    Turns out the two food lists have a typo; one lists the fruit as Moderate when it should be High in salicylate and amines.

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  • By Jojiieme

    Sueellen, I saw my specialist yesterday, after 3 months on my Friendly Foods program. My migraine pattern has changed, with most of the disabling effects no longer as strong in most attacks, and most attacks not as long.
    I don’t get as many abdominal attacks, a lot of the ones I do are related more to hormones.
    Much more exciting news! My evening meds have been reduced! My nortriptylene has been halved, my verapamil ceased; topiramate will be reviewed in 8 weeks. We’re also planning a review of my daytime meds.
    I hope your research and discussions go as well! 🙂

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  • By Jojiieme

    I do love your avatar! 😉
    I’m not ‘cured’, and I am waiting for the proverbial shoe to drop. But, yes, this is incredibly amazing after so long – most of my married life, now I stop to think about it.
    I’m particularly excited because I know, should I ever need them, these meds can come back into my armoury. That’s so reassuring; we usually change meds because they stop working.

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  • By mindwiped

    Hubby is a celiac, so has antibodies to gluten and should avoid it completely. However about a year ago his father moved in with us (don’t ask why, I’ll rant for a page and a half), and started bring in the gluten foods that hubby misses the most, so he’s been slipping on staying gluten free. Along with the digestive reaction, hubby also gets migraines, anywhere from 1-3 days after eating gluten.

    It’s not like I can tell two grown men they can’t eat things, but I’m ready to, as I hate seeing hubby hurting. I know migraine pain, I’m chronic, so watching his episodic pain get more frequent hurts.

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