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?

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Migraine Awareness Month 2015

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Money raised for Migraine Research Foundation through Jamberry fundraiser.   It “raises money to fund research into the causes of migraine, to develop improved treatments for sufferers, and to find the cure.”

A lot happened during Migraine Awareness Month.  I learned, hopefully taught, raised money and did my part to raise awareness.  Migraine is underfunded and therefore sufferers aren’t being treated properly for their specific needs.  Stigma and understanding need to change in many ways and any advocacy helps.  Thank you to anyone who participated, shared, and supported migraine awareness this month and everyday

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I found this graphic particularly interesting. I personally donate to these very deserving foundations each year with no exception. While supporting these charities, I have never been to a walk, golf outing, fundraiser, or event dedicated to Migraine. So while I’m giving money to others, who is giving money to help my cause?

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Time for another GIVEAWAY!

It’s time again for another GIVEAWAY!  In honor of Migraine Awareness Month I am giving away a beanie cap cover for the Headache Hat ice pack.  I, personally, have 3 Headache Hats so I never will be without one when I need it (which is pretty much daily!)    Now the maker of The Headache Hat has provided a beanie cap to wear over the ice pack in order to run errands, drive, or be out while discretely wearing the Headache Hat.  If you don’t own a Headache Hat and would like to buy one, you can go here and use MYML code at checkout for a discount!  If you know someone who loves the Headache Hat like I do and think they’d like to win, please pass it along to them.  It’s a short giveaway since the month is ending soon, so enter NOW!  The giveaway will run from 6/26/15 12:00am through 6/30/15 12:00am.  You can have an entry for each of the following: following on twitter, like My Migraine Life’s facebook page, and/or comment on this post saying where you plan to wear the hat.

Click on the link below for your chance to win!!!!!!!!!!!!!!!!!!!!!!!!!!!

a Rafflecopter giveaway

Make sure to clicked on the link & click that you visited in order to be enrolled. . Good luck & thanks for following 

All in Cleveland, All in Migraine, All in Hope

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While watching the Cavs last night I had no choice but to compare Cleveland sports to my migraines.  I did this not because watching them gives me a headache and nauseous, although it has, but because it gives me hope.  When the TV flashed, “last time Cavs won a championship…NEVER” my heart pounded and head filled with thoughts of possibilities.  With the theme of Migraine Awareness Month being hope, I had no choice but to make a comparison.  Watching losing teams year after year can be defeating just like losing year after year of having Chronic Migraines.  I continue to change my line up and think positively but more often than not a season slips through my fingers.  This year we had hope.  I find it ironic that I started my blog a year ago and my fight changed.  When LeBron came back, things changed.  LeBron embarrassed me, angered me, and frustrated me in the past.  All of these feelings I have felt with my disease.  It’s like, just when we had something going, it left and practically laughed in my face.  I’ve been there, done that more times than I’d like to remember with my pain.  But then he came back and I was optimistic, excited, and encouraged.  Once again, all the things I have felt with blogging, new medications, surgery, and more.  So the finals came and we got injured.  They said we couldn’t do it.  Then another hit and we were down another man.  Our team battled.  Just like any good athlete and true sufferer knows, you fight.  With these changes came strength from the bench that was unexpected.  I have amazed myself at the times I thought I was completely down and found another source of strength to get me through.  In the game last night, I had hope.  Hope that the “never” would turn into the “now.”  The thought of winning a championship that had never been won gave me hope that maybe my battle wouldn’t always be a loss.  History would be or could be changed.  Things would be exciting and new and different.  The hope of something different for Cleveland gave me hope for something different in myself.  I know it sounds crazy, but seeing something many thought impossible become possible is inspiring.  Until the last second of the game, those boys fought.  They were down but they were not out and never gave up.  Even though we lost, they taught us a good lesson.  There is hope, the impossible is possible or at least something that can be within grasp and to never give up.  They may not have won, but not every victory is a championship.  Hope is looking forward.  #AllinClev #AllinMigraine #AllinHope

Nature brings hope. How exercise, walking, hiking and moving help Migraine

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A place that gives me hope in nature is the woods.  We have an amazing park system around where we live and I love to take an afternoon hike.   It’s a place I love and am filled with hope.  If you ever come to Cleveland, visit the Metro Parks, you won’t be disappointed.  The last time I was in a migraine cycle I was down for about 3 days.  When I’m down, it’s a tough decision to lay around and suffer or push myself to get out and raise my endorphins.  I was at a level 6 or 7 which was better but still pretty bad. I decided to go to the parks with my family.  The temperature was pleasant and the best thing was the woods provided shade and a cool breeze that I breathed as deeply as possible.  My children, husband and dog always give me hope, but seeing them in nature calms me.  The picture above is one that I took simply while we were walking.  My husband to my left, my dog to my right and my beautiful babies in front of me.  It gave me such hope that things would be ok.  I was so grateful to be out of my bedroom and seeing the beauty in nature.  I was in so much pain that day, but my kids had no idea.  It reminds me that although I live in chronic pain, I hope to look back on my life and see the beauty.  This picture and the memories of that simple Saturday afternoon will not be remembered as pain, it will be remembered as hope.  I often look back at pictures and can tell you the pain level I was in that day.  But the events I remember as so much more.  Sometimes I have no choice but to miss life but when I can live it, I appreciate it all!

“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

Helping others have hope with Migraine

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What do you do or say to help others have hope?

Over the years I have had hundreds if not thousands of pieces of advice about my Migraines.  Most of the time it is well intended but wildly misunderstood.  Just do this, why can’t you do that, all you need is…  Well thank you, but that’s not going to cure me.  So when I’m talking to sufferers, such as myself, I do more listening than talking.  If they want to talk, I listen and try to be there.   As a woman, I like to talk things out and I don’t need an answer because there isn’t one.  I would love a solution, but just a simple, “I’m sorry” or “how can I help?”  means a lot.

I started my blog as a way to talk out my feelings and to give hope and support to others.  When I see someone comment on how they are feeling, I like to pass my post along to them to say, “I’m here, I understand and you are not alone.”  I felt alone for many years with my condition and telling someone that I experience and feel the same way hopefully gives hope.  I don’t always comment and feel that sharing my experience is more powerful by saying, “I have felt that way too, have hope you are not alone.”  Being misunderstood is difficult and giving hope that someone else understands has been powerful to me and I hope to pass that power onto others in need.

“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”

Manicures for Migraines

image3image1A friend and fellow migraine sufferer and I are throwing a Jamberry Nail Wrap party to raise money for Migraine Awareness.  100% of commission from the sales of Migraine Awareness wraps sold and 50% of the rest of the sales for the party will go to Migraine Research Foundation.  “The Migraine Research Foundation raises money to fund innovative migraine research to discover the causes, improve the treatments, and find a cure.   All operating costs are covered, so 100% of every donation goes to fund research.”  I personally will receive no money for the sales of the wraps.  My goal is to raise money and awareness.

To order any time go to: http://theresamillerjams93.jamberrynails.net/ and click shop

Theses wraps are $25 each.  If you would like to order one (or more) comment in the party and Theresa will give you ordering instructions.  Join the party and support Migraine Research Foundation and raise awareness with these pretty nails.  Feel free to pass along the information to anyone you feel may be interested in raising money for migraine awareness month.

So let’s party:  https://www.facebook.com/groups/1458699294442687/. If you do order, I’d love pictures of your beautiful nails and how you are raising awareness!