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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22 thoughts on “Botox, Topomax and preventatives for Migraine and their side effects

  1. I, too, have tried a number of medications over the years, both for my migraines and for my other chronic pain issues. I found out the hard way that trusting your doctors to make wise choices for you isn’t always a wise decision. Most doctors are honorable and trustworthy; mine was not. I became chemically dependent upon the pain meds he prescribed so freely. I was fortunate enough to get off these meds and start fresh. I do take Topomax and it kept me migraine free for almost 7 years. They’ve come back, not as bad as they were, but I’m coping. I have to admit, I’m very nervous about taking medications without a lot of research first after what I went through.

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  2. I completely get and respect your decision. I was chronic from 13-26 and only was on a preventative if it was being prescribed for another reason, usually psych.

    For me they never made a huge difference, knowing and understanding my headaches makes so much more. My mom also has been chronic her whole life and doesn’t take preventatives.

    I am on Botox and Amitriptyline both have a small impact and the Amitriptyline I take for multiple conditions. I do hope to find sone relieve through preventatives as other medical conditions are my biggest migraine triggers now (Ménière’s).

    Successful life with migraine always means keeping things in balance.

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  3. Thank you. I needed this today. I’m seeing my Dr tomorrow and saying no more preventative meds. They never helped without Botox and I’m done.

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  4. You mentioned you get Botox. How long and what side effects have you experienced? Just received my first August 24th and some things I’ve experienced are diff swallowing, facial rash and itching, wheezing and some low anxiety.

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    • I have gotten it several times. Actually, on and off for years. Each time is different. Each time we try to tweak the placement & amount to try to problem solve. Like all the meds I’ve taken, not much works every time so I try to adapt things

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  5. I can so relate!!! I am hypersensitive to so many meds. I get so many side effects that often they are making the effort to get well taking one step forward and two to three back. Thanks for posting. It helps to know we are not alone. Migraines for 30 years. About to try the surgery to avoid meds.

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  6. I started topamax two months ago. The first night my mind felt a little zappy but after that the only thing I experienced seemed to be really lucid dreams [not bad since they were like weird movies…not the scary type]. But now I’m noticing that I’ve been getting a tad dizzy at times and feeling some tingling in my hands and fingers periodically. Nothing major but something I’m noticing. Not sure if it’s in my head, a symptom of not eating enough [I’m chasing after a 20 month old] or a side effect of the medicine. What do you think? I’ve been happy with the results bc the intensity and frequency has improved dramatically. My dr just recently bumped me up from 20 mg to 35 mg so I’m still on a very low dose.

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  7. Pingback: My Migraine Life 2016 highlights | My Migraine Life

  8. I’ve tried them all, my doctor even went into the archives for,meds that used to be used and aren’t anymore. We’ve tried combinations, various doses etc. I just had botox done for the first time a couple months back with no changes to my migraines. Ugh

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  9. Pingback: What do you do when medication stops working? | My Migraine Life

  10. Pingback: Living with pain haze, brain fog, mommy brain and Migraine | My Migraine Life

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