Axon Optics and Shades for Migraine

FullSizeRenderJune 21st is World Migraine Solidarity Day! It’s a great social media campaign that is meant to raise awareness for Migraine and what better way to express it than in SUNGLASSES?!

With that said, let’s talk about my favorite indoor and outdoor glasses!!!!!  I am an affiliate of Axon Optics because I truly wear their glasses and love to spread the word of how they help.  If you order their glasses I will receive a small compensation for my recommendation.  Thank you!

“Axon Optics has utilized the latest research exploring the pain pathway associated with migraine and photophobia to develop the SpectraShield FL-41 migraine glasses lens. These lenses may help to reduce exposure to certain types of artificial light, particularly blue light and green light, which may exacerbate light sensitivity in those who suffer from migraines.   Both indoor migraine glasses and outdoor migraine sunglasses are an option.” Axon Optics

 

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Wearing my indoor glasses on a partly cloudy dinner date on the patio

 

Personally, I use the indoor glasses almost everyday.  I have both the indoor and outdoor and love them both.  I recommend going to the website and looking what may be best for you.

The reason I love the indoor glasses is the tint.  I am a teacher and mom so I spend a lot of time in fluorescent lights.  I teach in them, go grocery shopping in them and make dinner in my own home with them.  On cloudy days, I wear my indoor glasses outdoors because the glare still hurts my eyes yet regular sunglasses are too dark to wear.  I can not recommend enough Axon Optics Migraine Glasses!!!!

Check me out on: Instagram, facebook, and twitter

I’ll be wearing my Axon Optics for the Shades for Migraine campaign and more.  Remember to participate in the Shades for Migraine campaign and tag me in your sunglasses #shadesformigraine

If you’d like to purchase a pair of Axon Optics, they are generously offering My Migraine Life readers a discount for Migraine Awareness Month!  They are a company that truly cares about migraine sufferers and not just selling a product.  Their customer service is amazing, their return policy is comforting and the founders are people invested in helping!

Use code mymigrainelife to receive 15% off your order

You have nothing to loose but light sensitivity pain!

Chronic pain is too much for too long and too often

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The last 3 weeks I have been in a migraine cycle from hell. Hell is the only place to describe it. I suffer from chronic migraine and even this rattled me. Here’s the thing I’d like to tell you about chronic pain, it’s too much for too long and too often!

You never get used to pain. I have found ways to mentally deal with it better, to alternatively treat it more naturally and ways to adapt my life but the reality is it hurts….a lot. With my migraines, I get insane pain (on all sides) that resonate throughout my entire body like a lightning bolt that never goes away. I throw up constantly (well, my body tries but at this point my stomach clenches so hard to keep any food in me that it’s basically violent painful heaves each time I sit up.) I have auras that consist of black dots, lines, zigzags, white light flashes and tunnel vision. I clench my teeth/jaw, fists, toes and thrash my body to the point I bruise. Light and sounds puts me at risk of passing out. The list of pains goes on and on and on while the minutes, hours, days and nights pass by.

When I was in labor, my nurse was able to tell me “Your contraction is at its worse, it’s getting better and going now.” The biggest battle besides the pain is not knowing how long the migraine will last. With this last cycle, I had points that I did not see the light at the end of the tunnel. The fear of living at a level 8/9 for the rest of my life was and is my reality. After an unending migraine, I don’t remember ever feeling better, can’t do anything to find relief and no one can tell me it’s going to be better soon because they don’t know that.

In comes the anxiety and depression that most chronic migraine sufferers experience. Anxiety about doing something to make it worse, about how long it will last, about missing out on life and about what will be missed in the future. Depression about being locked in a dark room alone for hours and feeling so alone. Alone. Alone to fight my pain because no one else can help. Feeling worthless and sad that this is my life and the way it will always be. Sadness from the things I can’t do and won’t ever do. The feeling of pain being the only feeling that I feel because nothing else can enter my mind is exhausting and unfair.

In fact, everything is exhausting and unfair. Even once the pain lowered, I was exhausted. Exhausted from fighting the pain and little sleep after days and days in bed. Looking at social media was too trivial. I can’t stand seeing moms complain about their kids when my children are my inspiration for everything and give me a reason to fight! Those moms are so ungrateful. In fact, the only reason I got out of bed was to go see my daughter for one hour at her school for an end of the year reception. I had spent the entire morning heaving from pain and used every bit of my energy to be there. One hour. One hour is where I spent all my energy in one day just to make my daughter smile and to make me feel human while other women are complaining that their kids are being kids….ugh, exhausting! (*Note:  I’m planning on writing a series on how my children are shielded from these episodes….**spoiler alert** lots of help and preparation!)

Once I emerge from a cycle, I always find it difficult to enter back into the real world. The world outside of my pain, outside of my room, outside of my head. I look in the mirror and don’t even recognize myself. My face is broken out and I look so weak and pale. My list of to dos is a mile long and the cognitive damage and physical weakness make it difficult to multitask like I normally do. I have trouble with just one task and focus on that alone. The anxiety stays with me because I never know when my migraine will return. I walk on egg shells and give myself credit for doing even the smallest things.

Chronic pain is too much for too long and too often. Before this 3 week cycle, I had made it 4 days at a level 5 pain level. This was good, but 4 days since my last major migraine? It’s not like I got food poisoning and thought, “Wow, glad that’s over, I’m never eating there again.” I’m going through this dramatic traumatizing event and thinking, when will it come back? Not if, when. Will it be tomorrow once I eat a normal meal again, will it be when I leave the house, will it be when my children scream and my stress raises, will it be when I try to get my list done and push myself too hard, will it be in a few days with my menstrual cycle, will it be when the weather changes AGAIN, or will it be for no reason? It will always come back….and soon.

I questioned if I should write this post. I like to be optimistic and show my readers hope. But the reality is, I suffer. I suffer a lot. Hopefully I help many with writing MyMigraineLife but there is no cure and I live with that every day. This is not a post to make you feel bad but to remind you that you are not alone. That maybe someone has it worse and to show gratitude for everything you can do today. To remind you that you never know what someone is battling with and to be gentle and kind. And to remind you that someday it will get better. My better does not mean I’m ok, it just means I’m out of my dark room today and I’m writing! That’s better! I still have a long way to go and am very aware that tomorrow it could be much worse. All I can hope is that it gets better…..

American Migraine Foundation, “Move against Migraine” initiative

American Migraine Foundation Launches Move Against Migraine Initiative

One of my favorite foundations, American Migraine Foundation, is starting a new initiative.

About The American Migraine Foundation

The American Migraine Foundation (AMF) is a non-profit organization dedicated to the advancement of research and awareness surrounding migraine, a disabling disease that impacts 36 million men, women and children in the United States. The AMF was founded in 2010 to provide access to information and resources for individuals living with migraine, as well as their loved ones. Working alongside the American Headache Society, the AMF’s mission is to mobilize a community for patient support and advocacy, as well as drive and support innovative research that will lead to improvement in the lives of individuals living with migraine and other disabling diseases that cause severe head pain.

AMF launched the Move Against Migraine initiative to help educate individuals about migraine, as well as resources, such as information on treatment and experts. 

Check out the full press release here

  • Move Against Migraine integrates advertising, public relations and social and digital media, as well as radio and television public service announcement.
  • Through the initiative the AMF intends to change the conversation around migraine and mobilize a large community to advocate for themselves and others to increase funding for research.
  • The initiative aims to help individuals:
  • Learn more about migraine and the treatment options via AMF online research and education library – visit https://americanmigrainefoundation.org/
  • Find help by visiting our website to connect with migraine experts (there is a Find a Doctor tool), learn from content developed by renowned migraine experts, or searching for a clinical trial investigating new treatment options
  • Get connected by joining our Move Against Migraine community on Facebook, and use your voice on social media to join together with others living with migraine and other diseases that cause severe head pain.
  • The Facebook group, Move Against Migraine, connects leading migraine and headache specialists with those living with migraine and other diseases that cause severe head pain. The platform features regular Facebook Live events with migraine experts, information and research updates.

The Fay Farm Rejuvenation Lotion review

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I was given the opportunity to try Fay Farm Rejuvenation lotion as part of a product review through the Chronic Illness Bloggers network.  Although the product was a gift, all opinions in this review may remain my own and I was in no way influenced by the company.

I had the opportunity to try Rejuvenation Lotion by Fay Farm and really love it for my neck and shoulder pain related to Migraines.  “Rejuvenation Lotion is made with all organic ingredients and is paraben and phthalate free. Great for use on sore, aching muscles. Loved by people suffering from fibromyalgia, rheumatoid arthritis, neuropathy and other deep joint and muscle pain. Magnesium Oil provides deeper relief.” http://thefayfarm.com/

I love it!  I’m always looking for new ways to treat myself organically and naturally.  The Rejuvenation lotion is a soft, lightly fragrant lotion that goes on without being greasy.  I suffer from neck and shoulder pain leading into the base of my head and up.  I use the lotion on my shoulders and rub it as far into my hair line as I can get and on my temples and forehead.  It is relaxing and seems to help my tense aching muscles quickly.  It doesn’t have the medicine smell and burning that many rubs do and a little goes a long way.

The Fay Farm is run by a family dedicated to creating quality natural body care products. They use milk from their herd of Nubian goats and herbs from their greenhouse from their sustainable organic farm.  None of the products contain parabens, alcohol, mineral oil, or phthalates. Knowing that I’m putting a product on my skin that was made by a passionate family using their organic farm makes using their products even better!

As with most healthy, natural, hand crafted products, there comes a cost.  I find the products to be a bit pricey but comparable to other health products.  When choosing my products, I consider quality and how it will impact my health.  A cheaper lotion may fit a better budget but will add chemicals and toxins to my sensitive system.  Cheap products are not worth triggering a migraine or inflaming my aching muscles with toxic chemicals.  Fay Farm rejuvenation lotion is worth not only the quality of product but the peace of mind that it carries with it.

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Check out their feature on NBC “The more you know” with Danny Seo

Botox, Topomax and preventatives for Migraine and their side effects

Recently I was asked why I don’t take preventative medicine for my chronic migraines. What a loaded question! I actually do, I get Botox but the effectiveness is hit or miss and I get different side effects from the injections each time. I never know how I’m going to feel the days after, the effectiveness of the areas, and the time before it kicks in and wears off. This is the same as all preventatives with me.

Weighing the side effects and effectiveness is really what I have battled with for years. So  I took my medication vacation before I had children and  haven’t gone back to any (daily preventative) pills. Before this “vacation” and a ton of reflection, I didn’t understand the side effects that I was getting from the variety of medications that I tried. I have a hypersensitive body and brain which probably seems obvious. But growing up I didn’t understand the risks and damage that these meds were doing to me while I was under the impression that they would help.

I have taken dozens of different preventatives over the years….none of which are specifically made for migraine sufferers. They have been anti seizure, blood pressure, depression, and more. None of which I am diagnosed with. But in an attempt to curb these daily headaches and migraines I have tried it. I always trusted my doctor would steer me in the right direction but what I have learned is to trust yourself!

I was on Topomax for the longest amount of time and from what I remember was the most effective for the greatest amount of time for me. I say, from what I remember because memory loss, fuzziness and concentration issues are just a few of the many side effects I had from Topomax. I started out on a low dosage and slowly increased to keep up with my growing migraines.

Topomax didn’t make me loose weight like many have reported but it gave me all the side effects mentally. I was tired, confused, loosing words, moody, dizzy, lost hair, had altered tastes in foods and more. The crazy thing is, I didn’t understand that these were side effects of the medication until years after I was off it.

I remember reporting some of my issues to my doctor but thought it was just associated with migraine pain and everything else that comes with it. The hindsight made me realize that I wasn’t crazy. The drugs I was given to help me were hurting me! It’s beyond frustrating to think I was taking these meds and they were making me worse.

I can’t tell you how many times I’ve gotten prescriptions and read the side effects and been both horrified and terrified. But most of the time I read it once I’ve bought it and it’s too late. I don’t have the money to be throwing away something that holds hope for me. The risks now just don’t outweigh the benefit to me.   I have never felt great on anything, so why continue to take anything? Nothing has been approved for my diagnosis so why am I a human guinea pig in the mean time?

This is not to say that I don’t think they work and no one should take them. Everyone is so different which is why the battle is real for all of us. None of us are the same and don’t get the results or side effects the same. I don’t necessarily regret taking these meds that didn’t work for me. I regret not being more informed!!!!!!! I regret feeling like I was crazy, a hypochondriac, and a waste of time and money searching for relief. I regret not listening to my body and understanding the side effects of my medications.

Side effects made my condition worse, gave me other issues to deal with and have caused a lot of problems throughout my journey. I didn’t understand that my growing and changing body would require changing meds and it wasn’t a fail. I now see it as another move in my game of chess.   I can now check those things off my list and say “I tried it and no thank you right now.”

Does that mean I’ll never go back on them? Of course not. I will do whatever I can to feel better. Some days are more desperate than others but most of the time I try to be realistic and think both short and long term. I used to think my doctor was going to give me something to leave with that would cure me and make me feel normal. I didn’t understand that it’s a journey and there are no cures. It’s a combination and balance in my life that I need to look for. I think if I was going to give some advice it would be, “Understand what you are taking, both preventative and rescue. Understand how they work together and dosages. Read and understand the side effects and risks of any medication that you use. Be careful, be safe, and hopefully be well!”

Do you take a preventative medication for migraine?  What side effects have you had?

Disney World tragedy and lessons I learned

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This morning I awoke to read that a toddler had been dragged into the water by an alligator from a  Disney World hotel.  I am so sickened by this.  I am so sickened by so much in the news, in fact, that reading has been a daily painful experience.  This world is a scary, sick and unpredictable place.  Hold your loved ones close!  I pray for so many today for so many reasons.

When I went to Disney World last year, I had a profound experience having the good, the bad and a migraine.  Please read my 3 piece series on Disney World and all that I learned and came away with.

Disney World

Disney world: the good

Disney world: the bad

Disney World: my migraine

 

 

Cravings with Migraine and triggers. Chocolate, salty foods, sugar and more

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bad habit and craving

Sugar!

Sugar!

I have a lot of good habits that I follow every day  to address my migraines.  If I ignore the things I do to prevent them, I would probably be bedridden permanently.  So the list goes on and changes constantly but I’m diligent and try really hard.  With all the good things I do there is one bad habit that I CAN NOT break.  It is my addiction to sugar.  I’ve read how bad it is, I know how fat it makes me but I just don’t care.  Anyone who knows me, knows this about me.  My father in law has bought me shirts that say, “I’m embarrassed at what I did for a Klondike bar” and “I run because I really, really, like dessert.”   He’s also gotten me “Mama needs a cocktail.”  All of the above are migraine triggers but we all need to pick and choose our battles, right?   It’s the truth.  Although I can’t run much anymore due to my migraines, I work out, partly, because I know my day will end with massive amounts of sugar.  I know for a fact that M&Ms  give me migraines.  It does not stop me.  I have a problem.  I actually have had more than one passionate conversation about how much I love M&Ms, the different types, and how a diet coke with them is like euphoria for me.  I literally look forward to each holiday so I can have the seasonal types.  I actually heard on the radio that M&Ms are the second most addictive food.  I don’t remember what the first one was because they had me at M&Ms.   M&Ms are only the beginning of my problem though.  Chewy candy and I go way back.  I remember for my 15th birthday my friend gave me a balloon with like 3 pounds of chewy candy weighing it down.  I had an ex boyfriend challenge me to a Sour Patch eating contest.  We never had the competition, but let’s get real….I would have won.  I eat fairly healthy and if I cut out sugar I would lose weight and eliminate a trigger for myself but I just can’t.  I justify it by saying this…..I would love to sit down and have a drink at the end of a stressful day but it just makes me feel miserable at this point.  I don’t smoke, I don’t eat fast food, I don’t gamble and I don’t shop for myself.  How do I relax at the end of a day…I eat candy.   I’m triggered by soooooo many things and eliminating my one vice just isn’t a priority to me.  So what happens when I don’t have dessert and the next day I wake up with a migraine because of the weather change?  Forget that.  Give me my candy.  If that’s the worst thing I’ve done today, I’d say I’m doing pretty good.  All of this is not mentioning the cravings migraines give me.  My husband and I were sure I would be a craving lunatic when I was pregnant but I wasn’t.  I crave sugar pre migraine way more than any craving I’ve ever had.  So my cravings and my bad habit are all in the same.  Sugar!  I have tried to stop but it just gives me a headache.  Like I said, one day I’ll get there, but it’s not a battle I’m fighting right now.  What’s your bad habit or craving?  I can’t be the only one!

I’d like to say I’m going to quit. Any advice?  How do I stop something that is a pre and post migraine craving and comfort habit?  

How do I give up sugar and not feel the emotional roller coaster of cravings & emotional withdraw?