Trying Medications that Fail

I just ran across this article I wrote in 2016 for Newlifeoutlook.

It is just another reminder of all the crazy things I try in order to feel better! I’m constantly trying new medications, therapies and life style changes to fit my individual needs.

Medications are such an important part of fighting Migraine and something that is so personal. There is a lot that doesn’t work and makes things worse or different. This was a major fail!

Zecuity

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What’s your diagnosis and where does that lead you with Migraine?

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Millions of people are diagnosed with migraine and every case is different.  So what’s your diagnosis?  What’s my diagnosis?  What does it mean to be diagnosed and how does that help?  Here’s my non-medical opinion.

I have my Master’s degree in special education.  It has been really helpful in understanding how the brain works, fails and where diagnosis and treatment can lead.  I think an example that I can best use to describe the migraine spectrum is comparing Autism to Migraine.  

If you have ever met someone diagnosed with Autism, you understand that that person is an individual and like no one else (and aren’t we all?).  Although, these individuals possess some similar factors that place them onto the Autism spectrum.  Does every person with Autism look the same, act the same, react the same, learn the same way, and have the same health and reactions to treatment?  The answer is an obvious no.  Where one person may seem to have some slight social issues and not much more, another individual may need 100% care for various extreme behaviors.  You may have a full conversation with one person and another may be completely nonverbal and ambivalent to personal interactions.  While one person may see improvement with dietary and behavioral therapy others may require heavy medications and need full time care with little improvement.  Everyone is different!

I have seen my neurologist for many years and I decided to ask her what my diagnosis was recently.  I knew the answer was a Chronic Migraine sufferer with neck and shoulder issues caused from migraines which is called Torticollis.  At the beginning, it was important to be diagnosed with something.  It gave me great relief that I, indeed, was sick and not making it up issues as I was led to believe by so many.  With my diagnosis I felt vindicated and believed since I was diagnosed, I would be cured.  Years and years later, I know better.  My diagnosis is no longer as important as my journey.   I have been through so many medications, therapies, and procedures that I’m not as concerned about my diagnosis versus my treatment now.

So why ask about my diagnosis?  Like I said, at the beginning it was huge!  It provided me a starting point and that is what seems to be the best place to start.  Just like people diagnosed with Autism, it’s only the beginning and an idea of where to begin with therapies, tests, treatments and more.  It puts me into a category that I need to find where I fit.  I no longer go into my neurologist to look for a cure.  I don’t think she is going to hand me a script for a pill that will make my disease go away.  I was stuck in this mindset for years! 

I now know it takes work!  Just like in teaching,  I know I can help  at school but work needs to be done at home.  They can’t come to me to solve their shortcomings like I can’t expect my doctor to help me without putting in the work myself.  My diagnosis has become the place I started and the road that I have travelled. 

I helped with the process of diagnosing students and I had parents fight putting a label on their child.  All of us have labels. My diagnosis doesn’t define me.   I think it’s what you do with knowledge of your label and what you do with it.  You have a choice to ignore it, to get more opinions, follow your path, and problem solve along the way.  Once I realized I wasn’t going to be cured and that I needed to fight with a well-rounded approach of many therapies and life style changes, I was empowered.  My label is just part of who I am.  I am a mom, a wife, a daughter, a sister, an aunt, a friend, a teacher, a blogger, a dog and chocolate lover, a travel enthusiast, a Chronic Migraine sufferer and so much more.

What’s your diagnosis? 

How do you feel it defines your journey? 

Pilldrill: daily medication management (sponsor)

PillDrill

This is a sponsored post. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

What is PillDrill?

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“PillDrill is the smartest, simplest way to manage any daily pill routine. Whether you manage your own medication regimen or help a loved one manage theirs, PillDrill’s intuitive scanning system keeps you on track with ease, elegance, and intelligence.

PillDrill was designed to be the first truly user-friendly medication management tool: simple enough for everyone to use, flexible enough to help anyone, and dignified because health products don’t need to be scary to work well.” http://www.pilldrill.com

It is easy to set up. Plug in the PillDrill Hub, connect the Hub to a Wi-Fi network and create your medication schedule using the app or website.

How does it work?

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Each kit includes the PillDrill Hub, 2 weekly pill strips, 12 scanning tags, and the Mood Cube.   Well-being can be logged to track mood or pain level.  You can track the income of medication by scanning the pill container to mark it as taken.

pilldrill_pillstrip2AM/PM boxes provide weekly organization.  Each ergonomic pod is advanced and individually removable, easy to open, and has a built-in scanning tag on its base. The strips themselves snap together, so you can connect as many as you need to accommodate your schedule

 

The app keeps you up to speed at all times.  The PillDrill app can create and edit your med schedule, get reminders and log doses on the go.  You can be notified about a loved one’s adherence and mood in real-time throughout the day. The app is compatible with iOS and Android and provides the fullest experience, but a smartphone is not required

For more information visit: https://www.pilldrill.com/how-it-works

Who is it for?

PillDrill works for managing your own routine or a loved one’s.

For individual use, the app can be used to get reminders and log doses on the go. If you need to log a dose on the go, simply open the app and “mark as taken” with a single tap. You can also set reminders to alert you directly on your smartphone when you’re not at home. If you use PillDrill to manage your own routine, you will get reminders that help you stay on schedule when you’re on the go.

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For family care, the app will send you real-time adherence and mood updates throughout the day so you can always know how the user is doing – without nagging. Your loved one doesn’t even need to use a smartphone at all. “If you use PillDrill to manage a loved one’s routine, you will get status updates so you can stay in the loop throughout the day.”

Why use PillDrill?

It is compatible with any type of health regimen.  There is no one size fits all with medication, so whatever the specifics of your regimen PillDrill has you covered.

PillDrill’s combination of adherence data, wellness tracking, and a dynamic reporting interface helps you better understand the effect that medications are having on your body and make more informed health decisions.

For more information visit: https://www.pilldrill.com/why-pilldrill

Where do I buy it?

“PillDrill is being sold exclusively through our website for $199.00 plus shipping and handling. Each PillDrill kit includes the PillDrill Hub, 12 Scanning Tags, 2 Weekly Pill Strips, and the Mood Cube.”  There is no subscription cost and it is a one time payment.

https://www.pilldrill.com/

 

What do you do when medication stops working?

 

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This post contains affiliate links

Several times a year my medication stops working.

To begin with, preventative medications give me terrible side effects.  I tend to stay off them except Botox.  I have been on and off Botox for years and each time it is different in results.  Sometimes it works, other times it seems to make me sick, the next time it may work but wear off early.  I never know.

I use a ton of natural therapies to treat myself and also get a variety of results

  • Massage
  • Acupuncture
  • Sauna
  • Epsom salt baths
  • Ice therapy
  • Restorative Exercise
  • Heat therapy

Depending on the trigger, pain level and situation depends on how much relief I get from natural products.

Abortive medication is taken to decrease a migraine or get rid of one that is existing.

  • Imitrex
  • Zomig
  • Frova
  • Treximet
  • Relpax
  • Amerge
  • Maxalt

Here’s the dilemma with abortive medications….I can only take them so many times per month.  When I have daily headache and migraines it is difficult to judge when to take them.  After taking my medication it usually works.

Occasionally, all of my medication stops working.  I take my abortive, I use natural therapies and products, I use everything as directed and nothing works!  I seem to get into a cycle that will not break no matter what!

Taking too many pain relievers causes rebound migraines so I am careful not to over medicate.  The problem is, I get to a point where everything stops working and I just need to suffer.  After battling for days and days and fighting every way I know how, I finally give up.  I get to a point that I give in to the constant migraine and just wait it out.  I stop poisoning my body with medications that aren’t responding with my body and I try to sleep it off till I can function again.  I run out of options and just wait it out.

Am I the only one who goes through this?

What do you do when everything stops working?

Letdown Migraines from Stress, Weekends and Events

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I get letdown migraines, have you heard of these?   I get migraines from the down slope of the week landing on the weekend and from stressful events.

During the week, I have a schedule.  I run things like clockwork in order to keep my children and me on track Monday through Friday.  Being on a schedule is huge for children and good for my migraines.  We know what to expect, are able to prepare and we all go with the flow.  But on the weekend, it’s a free-for-all.  Free-for-alls are sometimes fun but usually end in meltdowns and migraines in my house.

I am a  teacher and at some point during the  weekend spend time  in bed with a migraine.  I also get spikes during the week after school and in the evenings before bed.  These are letdown migraines from school and in preparation for the next day.  This happens to me most days.

Once the weekend comes, I get freedom, let down my guard and spend most of my time with a migraine.  My sleep schedule is off, I go to bed later, try to sleep in but mostly am thrown from too much or too little sleep.  I eat unhealthy and at different times than I do during the week.  I go to events with my family that often trigger me through light, sound, and activity.  Everything adds up to a migraine.

Along with letdown migraines from the week, I get migraines from the letdown of stress.  This means, when I am stressed, I can get through the event relatively well but once it’s over, my migraine spikes and I’m bedridden.  Think holidays, vacations, work events etc.

When my husband travels, I get a migraine both before and after his trip.  I get one in preparation of being on my own for a week with two small children and have one once he gets home for the same reason.  During the week, I go into what I call “turbo mode” and face life as it’s thrown at me.  I am super scheduled and exhausted but typically can make it a few days before the migraine letdown of stress. Even if I’m not worried, had a typical week and have no issues during the week of travel, a letdown migraine occurs.  Even when I think I have things handled, my body still punishes me for pushing through “turbo mode.”

Letdown migraines come from life’s many ups and downs.  A spike in life results in a spike of migraine pain.

Do you get letdown migraines?  

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?

How to travel with a chronic illness

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After my Lessons your children learn or miss on vacation post, I was asked how I can travel with a chronic illness.  Not easily, is my answer.

As always, I prepare….

I saw 3 doctors the week before I left.  I was on a 20 day antibiotic, taking sinus meds, was treated by an acupuncturist, got a massage, made trips to the pharmacy and had a follow up the week I returned home.  I was able to make it until day 4 before my migraine spiked.  Typically, I get a migraine on day 2 so this was good for me.

I had a suitcase and carryon filled with natural products that I use.  I didn’t take a picture but check out my reviews and it will give you a good idea of some things in my purse.

I had a few days of migraine but only my evenings were consumed with pain.  I was able to stop a level 7/8 from going to a 10 and was able to enjoy the next day at a reasonable level.  These are all victories for me!!

As for returning home….

I have now had a migraine for 12 days straight with no relief.  My pain fluctuates between a 4 and 7 most days but mostly is a constant never ending full body fatigue and heightened stimulus sensitivity with brain pains. My cravings have been out of control and I’ve been packing on weight that makes me even more uncomfortable. 

It’s hard to describe to a non-sufferer, but I’ll just say it’s tough mentally as much as physically when I am in a cycle that isn’t being broken at all. It’s just this wet blanket over me that I really only feel in my down time.  I’m a busy teacher and mom and have been able to do these well but the second I need to do anything other than childcare, I just don’t have it in me. 

my spoons

Priorities of my spoons is the best way I can describe it.  I had to cancel plans this week, was like a rag doll this weekend and generally just felt crappy since I’ve been home.

Traveling comes at a huge cost for me but one I’m willing to pay.  When I live with a migraine daily, traveling and spiking it seems bad but I’d rather get a few days of glory than a week missed in my hole.

Here’s some good examples on how I feel this week: 

 

Oh the joys of traveling

One step forward two steps back

When everything stops working

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How do you get through traveling, before or after?