Answers and Information About the New Migraine Treatment Tonight Live on American Migraine Foundation Facebook Page

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Are you curious about the new Aimovig CGRP treatment for migraine?

Tonight at 8 p.m. EDT, the American Migraine Foundation will be hosting a Facebook Live with neurologist and headache specialist Dr. Stewart Tepper about the Aimovig FDA approval and the future of CGRP treatment for migraine.

Join the facebook event here

Do you have questions?

If you have any questions about CGRP and migraine, post your question and encourage your followers to do the same. Your questions will help guide the discussion.

 Tune in tonight (5/23) at 8 p.m. EDT Live on the American Migraine Foundation Facebook page to join the conversation and learn more about this new preventative treatment for adults living with migraine

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Why is Healthcare so Unaffordable?

Why is Healthcare so Unaffordable_

This week I was notified that my copay for an already expensive medication was raised.  I was supposed to receive the treatment and was not properly notified of the change so my much needed appointment was postponed for 2 weeks. I spent the day on the phone with my specialty pharmacy.  I  was sobbing as I gave her my credit card information.  The woman on the phone’s voice actually started shaking too because she felt so bad that I required a medication that has such an obviously outrageous cost. The price of ONE medication is more than I make in a YEAR!  I basically work 3 full time jobs.  I’m a full time mom, a teacher and a blogger/freelance writer.  All of these take long strenuous hours and get paid very little for the time and passion I put behind them.

My last conversation with my neurologist was her saying “If you don’t take more medication you aren’t going to get better.”  I wanted to say to her, “If I took all the medication you want me on, my Migraine may go away but the side effects would make me a different person and I’d need to sell my house to afford the 5 other meds I require.”

The costs of medications are insane and the question remains for not only me, but everyone: WHY IS IT NOT AFFORDABLE TO EVERYONE?

Missing my appointment caused me to cry all day!  The crying spiraled into a migraine cycle that I now am existing in and quite possibly can suffer with for the next 2 weeks.  With a neurological disease, everyone is so different.  Medication should be affordable to all with options to receive treatment that works for each individual.  I can’t tell you the amount of money that I’ve spent on meds I’ve filled and ended up throwing away.

When there is no cure, how are any of us supposed to figure out how to feel better if we can’t afford it?  We can’t work enough hours to pay for it and the lack of proper medication makes us miss work or be unable to work because of it.  The result of missing my appointment has and will continue to make me miss days, if not weeks, of my life suffering A LOT.  I’m talking about a level of pain that I hope many people will never understand. This requires me to take more medication (which in reality doesn’t fix it), which also costs a lot, struggling through side effects and other issues.

HOW CAN WE GET BETTER IF WE CAN’T OBTAIN OR AFFORD PROPER TREATEMENT FOR EACH INDIVIDUAL PERSON?

Yet again, I spent all my free time this week on the phone!  Check out how this isn’t the first time….I spend my free time talking to insurance, pharmacies and doctor’s offices

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*Note: I typically don’t speak about the specific medication I am on because I don’t want it to be confused by advice.  Everyone’s results, side effects and costs are all different.  We all need to do what we think is right for our journey.

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

How we doctor my dog and she doctors me

This is going to be a short and sweet post. I’ve been sick since Christmas and my brain is feeling less than creative. In fact it’s down right stuffy, pained, exhausted, a bit sad, stressed and frustrated.

So I thought I’d share a fur baby and girl baby story that I think many of you will appreciate….

As I sat with a sinus infection, while experiencing side effects from new meds and my son being sick with constant meltdowns I watched my daughter “doctor up” my dog yesterday.

All she wanted from Santa was a pet vet clinic, she loves animals! I watched my dog wait in the waiting room (yes, that’s my SensaCalm weighted blanket on the couch that I have been hibernating under while I’m sick! Affiliate link)

Then she was seen by the doctor

That evening I missed a big traditional family dinner. As I sat in my dark room, my dog held my hand and kept me company for hours.

The head pain of Migraine is really extreme! All of the other things really suck! And there are a lot of other things (body aches, nausea, cold hands/feet/nose, etc)! One of the hardest things is being alone and missing out though! It’s really hard!

My dog is more than a dog, especially during these times. She is my sanity and a soul that is literally by my side during dark times. Anyone who has cried holding their pet can understand the depths of this bond.

I’m so proud that my daughter is such an avid animal lover. She gives and receives love in the biggest way and has the biggest heart. Seeing her show the love and compassion that my dog shows is something really special! ❤️❤️

Anyone else spending extra time with their fur baby being sick this Winter break?

Am I the only one fighting being sick while having sick children?

Local research for Chronic Migraine now enrolling-qualify and receive payment that varies by study

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A new trial is being done to help medical research for migraines.

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Chronic migraine headaches can interfere with work, family, and leisure. Medications may not manage the pain, nausea, dizziness and other symptoms associated with migraines. This trial may help people suffering from chronic migraines maintain their lifestyle better. Please share this study with your community and help medical research for migraines.

Please complete the online questionnaire to see if you are eligible for the trial

Learn more about this trial on the sponsor website.

If you are not familiar with clinical trials, here are some FAQs:

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans.  All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatment that wouldn’t be available to the general public only upon approval.  You will also review study-related medical care and attention from clinical trial staff at research facilities.  Clinical trials offer hope for many people and an opportunity to help researchers find better treatment for others in the future.

“My Relationship to CureClick” (full-disclosure link): http://curec.lk/1Gb4toG

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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?

“A dream you dream alone is only a dream. A dream you dream together is reality.” John Lennon

John Lennon was quoted to say, “A dream you dream alone is only a dream.  A dream you dream together is reality.”

I love this statement, yet it should have the disclaimer….with a lot of hard work.  Besides hitting the lottery, I can’t think of any dream that can be achieved without hard work and usually needs some sort of luck.  If it was easy to obtain it wouldn’t be a dream.  So let’s talk about my personal dreams for Migraine:

To find a cure!  To be cured almost seems too farfetched for me, but that’s why I dream!

To find a medication that works.  I have been on countless medications and I have always had side effects from them.  For years and years I didn’t understand the side effect from my medications. I was under the impression that the way I felt was either a  side effect of my migraines or just my weak system.  My migraines have many more symptoms than just head pain and my meds compound the difficulties my body struggles with.  I have found some relief for small amounts of time then I seem to get a resistance, my body changes or for whatever reason it stops working.  I have even gone to the extreme of having migraine surgery and it did not leave me with a cure or without side effects.  Too many meds,  yet when my pain level escalates to above a 7 it seems like there are not enough meds.  I’d just like one that works all the time, every time.

To fund research to accomplish the above dreams.  This is what I’m talking about when I discuss hard work and luck.  It seems like funding just isn’t a priority even with many people working hard to make it one.  I’d like some celebrities and political figures to back this.  That would be lucky….it should be their duty, but it would be lucky.

To stop the stigma and give Migraine the respect and recognition that it deserves.

To increase the support system.  I am fortunate to have a huge circle of love and support but I’m not sure how I would do it alone.  I’ve spoken with many that are battling by themselves and it’s not ok.  With Migraine comes a whole plethora of physical and mental obstacles that need to be addressed as a whole.  There is a great need for support in a world that can seem so misunderstood and isolated.

 

I can go on and on about my dreams and the dreams of the migraine community.  Together we can make it a reality but not without hard work.  Dreams aren’t handed to you so it only makes sense to work together.