Mile for Migraine charity walk/run 2017

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This year, I started a virtual team for Miles for Migraine. “Miles for Migraine is a registered 501(c)(3) Non-Profit with the mission of improving the lives of migraine patients and their families, raising public awareness about headache disorders, and helping find a cure for migraine. Miles for Migraine produces fun run events, typically 5k and 10k races to raise money for migraine research, and also hosts youth camps for kids and teens impacted by migraine or other headache disorders.”

I love this race because we all can participate virtually.  I have asked for virtual participation through “Runnin for Research”  to help raise money for American Headache Migraine Association in the past but this year I’m actually asking for donations and participation for Miles for Migraine for the first time!

My goal is to raise $300 in honor of my blog being 3 years old this summer!

Please go to my pledge page and make a donation if you are able.  All or part of your donation may be tax deductible as a charitable contribution.

The fundraiser will go through the month of June in honor of Migraine Awareness Month.  If you’d like to see me reach a goal, please specify and I will do my best to honor it.  If you’d like to make a miles goal, please take a picture of yourself making those miles for My Migraine Life and I will happily post it and give encouragement as always.

The great part is, no race day, no big commitment, just motivation.  If you don’t have the money to donate, please participate by walking a mile or moving one day and tag me in your success.

I want to thank any of you in advance for your donation and participation.  The smallest amount makes the biggest difference. THANK YOU!

Donate

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*Once you’ve donated and/or made a commitment to walk a mile, don’t forget you have a chance for something FREE!!!!  Enter my giveaway for a Migraine Awareness Band that ends 6/10/2017  Enter NOW!!!

 

Migraine Awareness Band Giveaway!!!

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This week I will be doing a *giveaway* of 2 Migraine Awareness bands.  The official color of Migraine and Headache Awareness Month is purple.  These bands are a perfect complement to anything you are wearing and promote conversation and ways to spread awareness.

The contest runs 6/2/2017 (12am) through 6/10/2017 (12am)

You MUST:

Comment on this post and

Like My Migraine Life facebook page

(please do this through rafflecopter link below)

Additional entries:

Follow twitter page

Tweet about the giveaway

Follow on Instagram

*Please share*

 

 Enter Here: Rafflecopter giveaway

themigrainecuase band

No purchase necessary.  US residents only.  This promotion is in no way sponsored, endorsed or administered by, or associated with Facebook, twitter or instagram. You understand that you are providing your information to the owner of My migraine Life and her social media and not to them.

Migraine and Headache Awareness Month 2017

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Migraine and Headache Awareness month begins today!  I will fully admit that I may be a bit behind on posting due to a cycle of migraine that just will not go away!  I will be participating and challenging myself each day to do some kind of advocacy for migraine and headache awareness.

Day one is simple:

I’m asking you to share this post and invite others to follow:

My Migraine Life

Facebook

Twitter

Instagram

 I think you will be shocked to see who suffers from migraine and headache disorders.  I can’t tell you how many people I have run into that say, “I don’t suffer like you, but I do get headaches or migraines in my own way……”  We all suffer differently but can learn so much from each other.  By others following they can learn from my experiences and I can learn from theirs.  Supporters (parents, friends, co workers, bosses, neighbors) will learn how to help a loved one and understand the depths of migraine and headache disorders. 

Knowledge is power and following will give you added power to fight!

This month My Migraine Life will be giving you opportunities to:

·         WIN a giveaway

·         Fundraise for migraine and headache disorders

·         Learn new information

·         Find and receive ways of support

·         Make some social media “noise”

Some events allow you to spend your money on fundraisers or products that help sufferers.  Some events don’t require money and only ask for your participation.  Some events are to teach you while others are to support you.  There is a variety of ways to make Migraine and Headache Awareness Month a success.

 

So first things first…….follow and share on all social media to get as many involved as possible.  Together we can make a difference! 

Thank you!!!!!

 

 

 

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?

Runnin’ for Research: headache and migraine disorders 2016

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http://www.runnin4research.org/index.html

To improve the quality of life of those who suffer with headache and migraine disorders through fundraising for quality research and the promotion of patient empowerment, community awareness, and local and national advocacy.

Here it is….that time of year where the leaves are changing, the air is getting crisper and it’s time to donate.  During the Fall I participate in many charity walks and Runnin’ for Research is one that I added to my list last year. https://mymigrainelife.wordpress.com/2015/10/09/running-for-research-and-icing/

“Runnin’ for Research, Inc. (R4R), was founded in 2015 as a charitable organization dedicated to research, awareness, empowerment and advocacy in all areas of headache and migraine disorders. The primary mechanism to accomplish the missions is the organization and implementation of 5K runs and walks throughout the United States.

Prior to its founding as a 501(c)3 organization, R4R operated as an entity of the American Headache and Migraine Association (AHMA), starting in 2014, and completed two cycles of races. In total, over $25,000 was made available to AHMA to distribute as warranted. Contributions to R4R are used to recruit, support, market, and manage local race events with all proceeds from these events being used to support the missions of the organization. Examples include support of the American Migraine Foundation, the American Headache and Migraine Association, and the Alliance for Headache Disorders Advocacy. Other entities may be supported upon request if they align with the mission of R4R.” http://www.runnin4research.org/about-r4r.html

Runnin’ for Research is now an independent 501(c)(3) organization.

How you can participate:

http://www.runnin4research.org/upcoming-races.html

Runnin’ for Research will be run in Kansas City, MO, Morgantown, WV, and Louisville, KY on October 8th.

Each location will offer:

5K run/1 mile walk to raise funding for headache and migraine research.

1 Mile walk non-competitive, untimed event.

“Virtual Runner” for anyone who wants to take part, support our event, but can’t actually be on site.  You can choose to run a 5K or walk a mile while the event occurs, or rest at home knowing you are supporting a great cause.  Of note, virtual runners will not be sent a race t-shirt.

Last year and this year I will participate as a virtual runner.  I am not a runner so I will be walking and donating to R4R on October 8th in my own location.  I encourage you to donate!  If you are unable to donate, I encourage you to go out and walk that day sending positive vibes to all those effected by Migraine and headache disorders. 

If you participate that day, please #mymigrainelife and tag @mymigrainelife on facebook, instagram, and twitter to spread the social media buzz about the event.  I look forward to seeing your pictures and reading your stories!

Thank You!!!

Getting to know My Migraine Life


After a month of advocating for Migraine and headaches, I thought I’d let you get to know ME a bit better.  Please feel free to answer these questions and tell me a bit about yourself also.  Here’s some things you may not know about me.

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic migraine
2. I was not diagnosed until years after my first migraine.
3.  I had symptoms since: probably the day I was born or soon there after. I had my first migraine when I was 5 that I remember.
4. The biggest adjustment I’ve had to make is: being prepared for it to hit at any moment, anywhere.
5. Most people assume: that it’s just a headache
6. The hardest part about mornings are: waking up. I have a headache everyday when I wake up and the direction of my pain level dictates my day
7. My favorite medical TV show is: Gray’s Anatomy
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: going to sleep. I love to sleep to escape the pain but my eyes flutter open from the pain and it takes me a while to fall asleep.  By the end of the day my migraines escalate to levels that require peace and quiet
10. Each day I take the least amount of pills that I can & vitamins in order to survive.
11. Regarding alternative treatments I: do as many as possible to hopefully cut back on meds. They help minimally, but I do whatever I can to help myself naturally.
12. If I had to choose between an invisible illness or visible I would choose: no disease. It is actually helpful at times that I can hide my pain but also leaves me vulnerable to judgment. I don’t know how it feels to have a visible disease and I’m sure that just as many problems arise with it.
13. Regarding working and career: I used to be a special education teacher and the stress triggered me into missing many days and was criticized for having my own special needs. I now stay at home with my children which allows me flexibility but no breaks. I literally live, eat, sleep and breathe my children and even if I’m crazy sick, they are still my responsibility.
14. People would be surprised to know: that I am chronically ill. I hide it really well (the best that I can) so my children and friends don’t worry about me.
15. The hardest thing to accept about my new reality has been: it’s not a new reality. I’ve lived with it my entire life but have never gotten used to it. It has changed as often as I have since I was 5 and it is constantly a trial and error to give me some kind of normalcy.
16. Something I never thought I could do with my illness that I did was: go to college. I say this in hindsight because I was naïve in thinking that I would be fine when I left from my family and doctors. I have read how so many people have had to drop out of school and how it affects their education. From hearing others stories I am most grateful that I was able to be educated and enjoy college life at the level that I did.
17. The commercials about my illness: make me roll my eyes and give sarcastic comments. See my thoughts in Excedrin migraine commercial 
18. Something I really miss doing since I was diagnosed is: being carefree. I don’t remember a time that I didn’t have migraines and I live each day thinking and dealing with them. To not have to think about my chronic condition would allow me to live much differently.
19. It was really hard to have to give up: drinking, foods, nights out, events etc. I miss out on a lot and even more if I’m not cautious
20. A new hobby I have taken up since my diagnosis is: blogging. I find it meaningful to help others and in return learn about myself and sort through what I’m dealing with.
21. If I could have one day of feeling normal again I would: (see) https://mymigrainelife.wordpress.com/2014/06/02/what-would-you-do-if-your-dream-of-a-pain-and-a-completely-symptom-free-life-came-true/
22. My illness has taught me: that I’m stronger than I think and that giving up is not an option
23. Want to know a secret? One thing people say that gets under my skin is: it can’t be that bad.
24. But I love it when people: say they enjoy my blog. I feel like I’m making a difference with positive feedback.
25. My favorite motto, scripture, quote that gets me through tough times is: live like  you are dying.  I never know when I’ll be locked in my cold dark room and I do not take low pain days for granted.
26. When someone is diagnosed I’d like to tell them: I’m sorry. It’s a journey.
27. Something that has surprised me about living with an illness is: how many aspects of my life that it effects.
28. The nicest thing someone did for me when I wasn’t feeling well was: a lot. I am surrounded by love and have an army of people who fight for me. I feel so sorry for people who are unsupported and alone with this already isolating disease.  Love won’t cure me, but it has healed me.
29. I’m involved with Invisible Illness Week because: bringing awareness is important.
30. The fact that you read this list makes me feel: special. There is a lot to read and do and the fact that you read about me is special. Thank you for reading.

Migraine can kill through stroke and suicide

Migraine can and does kill through stroke and suicide.

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@MissionMigraine

 

I have a confession to make….I believe I have had at least one  mini stroke.  I have discussed it with my neurologist and she told me there is  no way to know unless we did a head scan.  The damage my brain has endured  would make it difficult to  confirm.  But we both are pretty sure I did.  She was unhappy with me that I did not call 911 and has said that next time I may not be as lucky.

I don’t discuss it often because the reality of it is pretty heavy.  It was the final straw that made me decide to have migraine surgery about 4 years ago.  I was home alone with my daughter.  I put her down for a nap as my migraine raised.  I believe I had a stroke while I was laying in bed.  It was different than others and I actually remember going from severe pain to everything going quiet (including the pain) and a feeling of floating on top of my body.  I passed out and woke up 2 1/2  hours later.

My 14 month old daughter  was safely playing in her crib when I awoke.   As I stood staring at her I decided that there was nothing I wouldn’t do to fight my migraine disease. I had the back of my head, sinuses, and eyelids slit opened, decompressed and scraped in hopes of never having that happen again.

I since have had 2 other incidents that  I feel  could be  a mini stroke  again.  I live with chronic migraine with aura which puts me at a higher risk.

So why don’t I go to the ER when I get to this point?

  1. Doctors are famously known for calling migraine sufferers drug seekers and don’t understand how to treat them properly.  The last time I went to the ER I was pregnant and they gave me a medication I had a reaction to.  Even after disclosing the 3 medications I’m allergic to I was given a medication that is known to have interactions.  I was pregnant and lurching off the exam table.  I remember the nurse annoyingly saying, “If you can’t talk to me and tell me what’s wrong, I’m not going to help.”  I was convulsing, scared  and completely unable to speak.  I regret not getting her name to report her years later!  She made me never want to go back and her attitude is dangerous to my health and mentality of getting help.
  2. The wait, chaos, judgement and uncomfortable environment is REALLY deterring.  At home I have my regime of medication and my support team knows how to treat me.  My husband, mom, and sister go into action caring for my children and me with years of experience.  I have confidence in our team work.

Please don’t take this as advice*************************  I am not proud that I have this mentality and that I have put myself at risk many times.  I hope that by sharing my story you take migraines seriously and know that going to the ER is recommended.

It should  remind us that we’re  not invincible.  The signs and feeling of a stroke are very similar to what I live with on a normal basis.  Except for the arm pain, I live through stroke like symptoms monthly.

With this said, DON’T IGNORE stroke  symptoms with migraine  although they are difficult to discriminate between.  Ere on the side of caution and when in doubt call 911

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