Feeling Salty About Another Painful Migraine Injection
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- čas přidán 25. 07. 2024
- [Vlog 3.29.22] - Mary figures out her Ajovy injection... and is a little salty about it.
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Welcome to The Frey Life daily vlogs! We are Peter & Mary, a married couple in our early 30's, showing the ups and downs of everyday life with #CysticFibrosis, a genetic lung disease that Mary was born with. In August 2019, Mary started a new CF medication that changed the trajectory of our future, and life has changed dramatically - including our son, Elijah, joining our family in December 2021. We also have an adorable standard poodle, Oliver, and a hairless sphynx cat, Harry. It's our hope that these videos can be an encouragement to to celebrate the little things in life and find joy amidst a world full of hard realities!
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Im due for my monthly Ajovy injection. I prefer the syringe, where I can inject it a bit slower than the auto injector. Make sure it isn't cold at all! Room temperature is key!
Ajovy has changed my life.
It’s annoying that insurance companies make you jump through hoops before they’ll cover stuff. If any of them making the decisions had to do this then things may be different.
SO TRUE!!!
My uncle is one of the people who works for an insurance company and decides if people get treatment covered or not. He has a finance degree, no medical background. He's also a total jerk, he thought it was funny when cancer patients got denied treatment while my dad was dying of cancer. I don't think they're the kind of people who are able to feel empathy.
Plain and simple. These people have no souls.
I loved that Peter licked you at the end when you called yourself salty! He is a wonderful husband!
I started watching your videos at the beginning of high school: intrigued by all the medical stuff you go through and enlightened by your positivity. Now I'm 19 and in college to become a nurse. You are so inspirational and just enjoyable to watch!
Girl your expressions throughout this were everything! So relatable. I wish you luck in getting the other meds ❤️
Morning lovely family xxx I watch every day look forward to seeing your happy beautiful family x
Totally agree that how to and experience sharing videos help sooooo many!! I found you guys back in August when my husband had to get a Mediport for his cancer treatment. Your videos were awesome and I became hooked to your channel and journey. Thank you for sharing your life with the world! ❤
I hope you feel better soon and I wish you a speedy recovery ❤️ 🙏
I will be forever grateful for you and Rachel posting her SubQ IGG video. That's how I found The Frey Life and became a Forever Fabulous Frey Fan!! ❤️🙏🥰
Mary, I just did my very first self-injection (Emgality) after watching your entire migraine medication journey last night. The shot was in fact QUITE painful but I felt so much more prepared and confident having seen your videos. For that, I just wanted to send you a profound thank you for sharing your story and experiences with the world.
Wishing you so much luck hopefully getting the infusion approved (finally!) and that it helps reduce your migraine pain. 🤞
I appreciate your videos - they sure have helped me with my daughter's IVIG!
Im getting my j tube changed to a button next week and Ive watched your button change video like 50 times. It does really help to see someone else experience.
Ohmygosh I think we were all feeling that frustration right along with you. Best of luck with the IV working out in the future!!
Thank you so much for showing this. With Emgality unavailable and now being prescribed this one, your video has eased my nervous mind. Oxox
I do Aimovig, and I get the insurance difficulties! The Aimovig isn’t too bad, but frankly it’s better than the migraines that it is making better! Good luck on Ajovy, lots of people do very well on it.
We're fighting with you Mary!!! you got this!
Your videos and the chronic illness community online have made so many things easier for me as my illnesses have progressed. I'm so thankful for people who share their personal experiences.
It's truly helpful to know you aren't alone in your journey isn't it!?! I'm glad you've found helpful input from others. I know it means a lot to me as well! 💜
Sending love and prayers your way 🙏 ❤
Eli is saying in his dreams- You got this Mom-Way to go! My hip hurt after you did the injection! Lol
I forgot to do my Humira injection earlier, so while I waited for it to get to room temp and while I did it I watched this video! I randomly picked something from my subscriptions and yours was the first and I didn't even read what it was about until I started it lol you're awesome, girl! 👏👏 proud of you for getting it done!
I love you guys so much! I had forgot till you mentioned the feeding tube that was the first video I ever watched of yours and have been along the journey since
Well done Mary. I hope you get to have the IV version soon 🤞
You have the best facial expressions ever!!!!
Mary you did so good. I had to do injections today and it made me feel so much better seeing I’m not the only one who has to do this.
🎉🎉🎉Mary, I am on Ajovy, the first one burned so what I started doing is taking the injection OUT of the fridge the night before injecting so it fully comes to room temperature. When I left it out an hour before it just wasn't long enough and it burned. Since letting it out overnight it does not burn. Good luck and hope it helps.
that was courageous Mary! That one took a loong time! I dont know how you did it. Good job! Just a step toward getting the infused kind.
I just have to stop at three minutes in, where you’re telling how you tube videos help you learn these at home medical procedures. I was on TPN (IV feeding) at home, on and off for 7 years,due to severe Crohn’s disease. This was pre-you tube! You are so blessed to have these videos to help you! I had a home health nurse come to teach me the process, and then I was on my own!
Re insurance crap…yeah, it is so frustrating! But it has made me so thankful when things do go correctly! Keep up your great attitude. I still have people tell me how they couldn’t believe my attitude during ten years of surgeries, home health care, isolation from others, hours every day on the toilet in so much pain, years I missed so much of my kids’ events, etc. They say it inspired them. So now I can encourage you! 👍❤️👏
Thank you for explaining and demonstrating the Emgality injection for migraines! 🐦
Thank you for sharing the good, the bad and the salty stuff! 😉
You got this Mary keep fighting.
You brave, brave woman!!!!
I am so glad that someone else that is so use to self injection looked at this like i did. Oh by the way if something goes wrong the medicine poors all over you all while the needle is still in. It was a blast. I have been on this one for a while can't tell it helps a lot other than for my eyes which make it worth it but I still have to do other treatments as well.
" Mary learns how to stab herself with a new kind of medication " 🤣 You are brave sweetie! Hope the rest of your day was great!
I loved the visit from Future Mary! 😂🤣🙃
I'm so sorry for all she's going through.
Prayers 🙏
I can call you one of my heroines Mary. Because of your video, I can access my port. One day being able to start my own IV might save my life. A hundred thank you’s for being a trailblazer and my teacher. I pray God will bless you & your family with divine health and very long & prosperous lives.
I loved the country western guitar riffs
Sounds like it was raining hard enough to hear water in the background
How brave you are Mary trying this new headache medication. I'm on depo shots for fibroid bleeding. The first three months were great with no bleeding. Unfortunately this second injection has not worked. I will have to talk to my docter about plan b. Thanks for sharing you're day god 🙌.
Mary, please know that your videos have made such a difference...you are the reason I didn't have a complete panic attack two years ago when I had a stroke and at the hospital, they unexpectedly (to me), pinned me and shoved a tube up my nose and into my stomach. Somewhere in my very confused head, I knew [(b/c of you and your medical videos (Gawd bless you, I would have been hysterical otherwise, so THANK YOU🥰)] that it was an NG tube and I'd be fine. I could take it, you'd shown me how.😘 Good luck with the "friggin" insurance company's run around and general circus. I'm sorry they're making you struggle, but you got this! 💜💜 Sending love, fellow warrior!
You’re so brave
I have an injection like that I have to take every 8 weeks for my asthma. It’s not bad. You have my sympathy!
This is always fun!!!
So sorry Mary that you have to deal with the injections. ❤️
Poor Mary, but she sure made me laugh through most of this video. It was very enterntaining.🤣😂
Hoping you get the IV soon 💝
Mary's top looks super soft and comfy
For migraines being in the military they have me shots in the back of my head that played up to 6 months. I now have lung cancer constant mucus and phlegm coming up and they only give me fioricet which doesn't really work. I have you, Peter and Elijah all in my daily prayers
Oh goodness, sweet sister!!! Prayers for you!!! 💜💜
I am a migraine sufferer myself and I don’t like taking my night time meds I understand what you are going through Mary
You can do it Mary you can do it Mary I'm so proud of you marry that you can just tell yourself that I'm not going to get excited or anything like that we know you can do it keep up the hard work Peter you're doing great too
I started ajovy in December. It has helped , but not taken away all migraines. I went from several a week to a few per month. The first 2 doses really not much improvement, but by dose 3 I did get some relief. Good luck.
I totally understand your trepidation with those injections. I have the joy of getting a monthly injection due to cancer. I swear that needle has the diameter of the microchip that they do at the vet's office for pets. Hurts like the dickens!! Truly, ALL THE SYMPATHIES!!
Bless your heart, you are so brave!!! I just cannot imagine giving myself any injection of ANY kind, especially a horse size injection!° Yikes!! I hope the IV works well for you and no reaction. That would definitely be great!! You are a trooper, that's for sure!!!!
I got off Emgality, it hurts! Sorry you are still struggling with injections. I am taking a break on new medications for now and just tolerating the migraines. It's so hard on the body, hope .you find something that gives you some relief.
I hated doing injections. I had to do Enbrel and Humira. I feel for you Mary.
I've done biosimilars of both of those! Benepali (biosimilar of enbrel) was much better than imraldi (biosimilar of humira). Unfortunately imraldi works better for me 😒 I struggle to get the pens to go off and they hurt a heck of a lot more.
You have got this mary do it do it. You did it yay 👏 🙌 😀 😄 ❤️ good job.sorry you had a bad time with it that's 😔 sad 😔 love ❤️ you xxx
Don't worry we're with you
So sorry that didn't work. I hope the hospital is ready for you next time. 😁🧡👋
Mary I hope it works for you .. I was taking about 10-15 imitrex injections a month for my migraines and I did aimovig for two years and now am on ajovy and in 4 years ha ve only had to do 5 imitex and that was the first year ... It has been a life saver ..life changer for me ... Its a hard lid to get off I use a grippy pad ... Best of luck !!!!!!!!! and the belly has been my best place .... Just fyi !!!!!!
I'm sorry, Mary! Praying you get the insurance problem situated soon and that, Lord willing, this will be your last injection.
Quick question - you always wear this super cute lightweight blue hoodie top, Mary. Where did you get it?
I 100% google and CZcams EVERYTHING! I rarely read directions. My mom and uncle (who lives nearby and is always around) think I’m crazy, but it is how I learn and why wouldn’t I take advantage of the vast knowledge on those two platforms?!
As for insurance companies- whyyyyy do they get to say what medicine we put in our bodies when they aren’t are doctors and don’t know us from Bob?! Ugh!! I’m sorry it didn’t work and I hope you get the IV soon.
I love Peter’s soft “I’m proud of you”
Hugs Mary! I’m on Emgality, Botox, and I just had to have a nerve block. I feel like a pin cushion! I hope they find something to help you.
I didn't have success on Ajovy. It gave me ice pick migraines instead of managing my vestibular migraine. I hope you done have to do it for to much longer. Props to those Ajovy works for! Everyone's bodies are different.
Hey Mary, I’m on Ajovy. I find it easier into the front thigh. My necks fused though so I can’t bend my head to do it in my tummy. Xx
I been using ajovy migraine injection for 3 months now and it's great .my chronic migraine went away .I hate drinking pills and I been in many trials pill .but this one is the best for me
I used Emgality for about 3 years. It's so important for it to come to room temperature. If your house is chilly, roll it in your hands to warm it up a bit. My shots hurt much less if they warmed up. Cold injections stung really bad. Plus, alternate sides and try to go for as much fat as possible.
I tried both Aimovig and Emgality, which both stung like crazy, as well and ended up with hives for both as well. It left me with a prescription for an epi pen because the hives got worse with each injection lol. They didn't give me much help either with the migraines but thankfully my insurance approved Botox not long after that. Good luck on your migraine journey.
Sorry that was painful ,I would stay with what works best for you
It's not so bad once you get the cap off. I been taking them for a while. They really do help.
I have no idea if this would be an option for you or something you would be interested in, but my mom receives Botox in her head and neck for her migraines. It has been an absolute blessing for her and just wanted to bring the idea up in case!
I second the Botox, especially for frontal headaches, but the insurance companies do not want to cover unless you try everythinggg and the kitchen sink, too!
I couldn’t do Ajvoy it gave me a migraine the first time told neurologist no the that shot. That was two weeks ago still having migraines. Hoping my new medication comes through tomorrow. I also had the same spot when I took the shot.
If you haven't yet. Talk to your doctors and see if Nurtect ODT is right for you. I got it and for the first time in months I'm not bed bound for 7-10 days due to a hormonal migrane
Ajovy worked for a couple months for me, but then stopped and they got so much worse. The first time my throat swelled and the whole area turned into one giant hive. But I had to do it for 4 months before my insurance considered it another failed med and then I moved into Botox. Hopefully your insurnace will finally pull through for Vyepti!
You guys watching your videos makes me tear up sometimes. I just discovered your channel recently. I don’t have CF, I have EDS, MCAS, POTS, and severe GI complications. Despite the fact that I cannot relate on specific medial experiences, the thing I love about your channel is your husband and wife relationship. Before I got sick I dreamed of getting married and having children, but since being sick, I’ve felt like that dream has been slipping further and further out of my grasp. I think, who would want me if I am this debilitated? But then I see your relationship and reminds me anew that God is more powerful and loving than I can understand, and, if it is in his will, He will provide the perfect helpmeet for me, who will care for me and forgive my lack ability to “be normal”. You two are a reminder of His grace…thanks for being a shining light for all to see.
I always have my husband do my injections so I can clutch onto my pillow till the pain is absorbed lol
Sorry to hear it didn’t work! I’m about to do my third round of Botox (which isn’t working for me either), and only failing that will my insurance then cover me for anti-CGRP injections. We don’t have nearly the options for migraine meds here in Canada as you do there. I hope you’re able to do the IV version soon! 💜
I have ajovy but I put it in the same arm as my embrol since i have nerve damage in that spot from my degenerative nerve disease. The snap always startles me 😆 I will say it hurts way less then embrol.
I have been through all the same struggles with migraine prevention and finally started Vyepti. From what I’ve been told, Insurance makes you try all the others because Vyepti, for many, only last a few rounds because your body starts to build up anti something something antibodies and neutralizers making it ineffective. If you do get to start Vyepti, be aware that a very common side effect is itchy throat and nasal crap due to a histamine reaction. I thought I was having an allergic reaction to it but was told that it’s normal. It usually makes me feel crummy for the day but it’s totally worth it to me since it has helped so, so, so much. I still get migraines, just not as many. Nothing is going to completely prevent migraines, but having less of them in a week/month is nice. I’m thankful we have various things to try and more research is being done on migraines now, but I wish it was easier to work with insurance companies to get the different treatments without so many hoops.
Just look at precious Elijah while injecting his cute. Face will distract you 🦋💜
FYI, I use the the ajovy syringe and it is much preferred to the auto injectior as I feel more in control like a regular needle
Sorry you didn't get relief with this
I get to take my second humira shot today. I was totally prepared to take it until it got to the second before I pushed and then I was like wait. I don’t wanna lol. I access my own port every 4 days but a little shot got me for a sec. but it was totally fine and I think it already started to help in the first week.
I know it’s been a bit since you posted this video. Anyway - I had been on the Aimovig. Then insurance decided they would not pay for it. I just had my first Ajoyvy shot about 2 week ago. I thot the two hurt about the same too. My question is how long do the hives last on you? I suddenly started having hives... diagnosis of chronic hives since we could not find a reason why. Now I have to take a monthly injection for that too, XOLAIR. I am wondering if the migraine shot is causing my hives? I had not thot about that until I saw your video. Thanks so much for posting!
My daughter continues to use the injections monthly for migraines. Has a rash every month. Insurance holds her hostage every so often. Don’t know why it has to be this way. We feel your pain. You are a brave woman.
Good salty facial expressions!
I take Ajovy… the auto injector was much more intimidating than the manual syringe. The noise is startling! I found it to work.. to prevent migraines, but my anxiety level with the auto injector was too much to manage. It took about 5-6 months to get the full effect. Stick with it! I hope you get relief!
I take AJOVY too! I have only been getting maybe two headaches a month which if I catch it early I can take Nurtec and take a warm shower and it helps to relax enough to sleep. Sorry it didn’t work out though ☹️
I can relate with being salty when it comes to doctor stuff! So annoying! Insurance companies definitely don’t help the situation! I get headaches too that turn into migraines. Have you tried COQ10? It’s a vitamin that actually helps my headaches
Is it terrible that you have me laughing over all this? 😂
Hi Mary! My hubby uses a similar type of med administration for Ankolysing Spondilitis (not fun). As his is a biological drug it has to be kept in the fridge - he finds it stings less if he lets it return to room temp before using! Hope that helps Mary!
Could you use a numbing cream first?
Oh, I was hoping it would work. We're with you as you try to navigate the frustrating insurance situation in our country. It's just terrible that you have to be a hive-forming guinea pig while they consider whether the IV can be approved. Just terrible!!!!!! Sending hugs.
Just so you know, Salty Mary is Awesome!!! Is Peter your Pepper? My oldest daughter is an S and her husband is also a P so we gave out vintage S&P shakers at their wedding in Maine many years ago.
Hi Guys--I take a weekly injection and I use the thigh area and its less painful. --just in the instance you have to take it again-if they don’t change the med/route.
I am sorry this one didn't work for you. I just took my first injection last month and it didn't hurt near as bad as my depo shot every 3 months. It has worked super well so far, and my body did okay with it.
Hi Mary and peter
😢I understand what you're saying, I hate giving myself shots. I have to from time to time as I'm on blood thinners, and sometimes when having surgery I have to bridge my thinner and it's done on both sides of my stomach.
As an insulin dependent diabetic who uses an insulin pen, a week as someone who has a long list of allergies/reactions to medications, I would suggest a different injection site, such as the top of the thigh. First of all, when using an autoinjecter, the pen uses a lot of force, and can easily bruise softer tissue around your belly. I've also found that if I have an adverse reaction, including itching and hives, they tend to be worse if I inject in the belly. The tissue and skin in the thigh tends to be more firm and more difficult to bruise, and if hives develop, they tend to be more mild.
The struggle to get the Ajovy cap off is real!
Have you looked at meds like magnesium and vit d, folate and b12 for helping. Not saying it can or does help migraines but sometimes deficiencies can cause weird things. If you see your dr soon might be worth asking
Could you be getting hives from the latex on the injector? I take aimovig and there is latex on the mechanism that gives me a rash but the relief is worth it. I also get Botox every 12 weeks. I used to do infusion but after 3 years, 4 hrs every Monday and multiple port issues I decided to stop and have my port removed.
You can’t say it “didn’t work” as you were overdue for a med, so it was not able to perform to its full potential. Local reactions such as hives are part of the normal effects and are not necessarily an allergic reaction.
I don’t think you have an excellent grasp on how this medication works. It’s not like an antidepressant which has to build up in your system. Her headaches don’t gather strength the further she is from the previous dose. Also Mary never said they were local hives and she may be developing them systemically, in which case she is at greater risk for a serious allergic reaction. Even local hives can be a serious side effect.