One Year After Last Ajovy Shot

By itsmyhead

Last Updated:

1 min read

Having migraine for 35 years kind of makes me an expert. Well, in the suffering end, as well as every known remedy to humankind.

Will I finally find relief?

After several years of research, I found the CGRP medicine and waited until it was FDA-approved. I signed up for free trial samples, but was skittish about being a human guinea pig. Then I finally accepted 3 Ajovy shots over the correct time span recommended by pharma professionals. I found it had side effects that my doctor refused to admit.

Too happy, too soon

Then in 2021, I stopped having code red migraines. I thought, 'finally', I have grown too old to have these anymore. I was too happy even to tell my friends.

Several weeks ago I started getting a few hot flashes (which I never had post-menopausal) and then the return of the code red migraine.

Setting me back

I really do not know what to think, I am not a scientist. Nor can I afford $1,000 a month for the CGRP injectables. I tried taking my generic Naratriptan and it did nothing. So, not only has the bar been moved, but way, way back.

Where I am currently

I have had many gastrointestinal issues in the last decade that I attribute to my migraine meds. I eat a very healthy Mediterranean diet with no processed foods since my diagnosis in the 1980s.

Yes, that makes me a 77-year-old migraineur. Since a terrible one yesterday, I can barely walk steadily today.

After seeing dozens of neurologists, I am not prepared to hunt for a new one. I am sorry to be the bad news bear, but I truly feel for any of you suffering from this debilitating condition.

Share my own story

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Nancy Harris Bonk Member

<inline-mention username="itsmyhead" user-id="3734031"/> Thank you for being here and sharing your story with us. I agree - living with migraine for 35 years DOES make you an expert. I wish we didn't have to be experts in migraine, but here we are! I am so sorry you are having an uptick in migraine frequency or "code red" migraine. That is a very fitting term. I'm going to borrow, I hope that's OK! I do understand not wanting to seek out yet another neurologist, it's exhausting, but may be worth the effort. I'm not sure if you've been able to seek out help from a doctor who is a true expert in treating migraine and headache disease. Many of us have found these experts can have a huge impact in our care. Here's the thing, these expert doctors may be different from general neurologists as they are certified in headache medicine, all neurologists are not. General neurologists may be fine doctors but have a hard time being experts in one area because they treat many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A true migraine/headache disease doctor treats migraine and headache all day, every day. Here is more information on how these doctors are different and how to find one; <a href='https://migraine.com/blog/really-find-headache-specialist' target='_blank'>https://migraine.com/blog/really-find-headache-specialist/</a> <a href='https://migraine.com/living-migraine/neurologist-vs-specialist' target='_blank'>https://migraine.com/living-migraine/neurologist-vs-specialist</a> <a href='https://migraine.com/living-migraine/change-thoughts-new-care' target='_blank'>https://migraine.com/living-migraine/change-thoughts-new-care</a> <a href='https://headaches.org/resources/healthcare-provider-finder/' target='_blank' rel='noopener noreferrer ugc'>https://headaches.org/resources/healthcare-provider-finder/</a> Ok, now that I've said all that, don't lose hope! There are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to treat migraine disease and most of us use a combination of these, I sure do. Will you let me know what you think? Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
dennypharm Member

Thanks, interestingly, some 53 plus years “AFTER” AN official migraine DX, still a problematical condition…. Actually,I had guessed my Migraine Diagnosis earlier ( lots**of study of ALL this in Pharmacy School: as Migraines have tortured Humans since time immemorial)….anyways, I’m always staying in “treatments —Migraine Reduction Modes” , most of time ( lifestyle, meds, meditations / Biofeedback,” diet”, et al)…… Actually, I am always glad to hear experiences & strengths of 
1. Nancy Harris Bonk Member
 
 <inline-mention username="dennypharm" user-id="3719504"/> Thanks for sharing your input with us! Migraine is thought to be a neurological disease that we manage. Hopefully we'll see a cure in our lifetime! How are you doing today? Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
doxibug Member

How interesting that you mention the hot flashes. I am also past menopause but occasionally still get a hot flash now and then and -- often my migraine activity increases during those times. I am sure they're related. 
1. Melissa Arnold Community Admin
 
 <inline-mention username="doxibug" user-id="3869059"/> Hot flashes can happen for all kinds of strange reasons, that's for sure! The issue of temperature comes up in the community frequently -- it seems like lots of people with migraine have trouble with temperature regulation during/around an attack. Both men and women have shared they get chills, sweats, sometimes even fevers or part of the body freezing while another part is sweating. Awful! (It is worth letting your doctor know about continuing hot flashes because they can occasionally signal a more serious health issue.) In any case, you're not alone. Does anything help? I hope you have a good week ahead. -Melissa, <a href='https://migraine.com' target='_blank'>migraine.com</a> team
trooperangel Member

I started Emgality in October, have had some relief, but have started getting severe hot flashes.... Like tank top and shorts while walking the dogs, when it's 58 degrees. Glad it's not just me! 
1. Cheryl Picerno Member
 
 <inline-mention username="trooperangel" user-id="3916842"/> Thank you for sharing your experience. My husband had been on Emgality for about two years now, and it has really helped reduce the pain portion of most of his attacks. He has not complained about hot flashes, but he is warm most of the time and will sweat profusely from time to time for no reason. He is definately a shorts and t shirt person even when the temps drop into the 50's. I will ask him if he ever thought that might be related to his Emgality use. I know it causes him some constipation issues. I wonder if that may be due to Emgality dehydrating his body? Some medications have a diuretic effect on people. I hope Emgality keeps helping you moving forward. Warmly, Cheryl <a href='https://migraine.com' target='_blank'>migraine.com</a> team
dpasek Member

 Please elaborate on your comment "I found it had side effects that my doctor refused to admit." I have been using Ajovy and noticed what seems to be a significant chronic fatigue enhancement that I believe is attributable to this medication. I have some other significant concerns about it, details of which I will share later. I believe that Teva has no idea about the appropriate dosing for Ajovy on an individualized basis or what other necessary uses there might be in the body for this CGRP substance, and the consequences of interfering with it. 
1. Nancy Harris Bonk Member
 
 <inline-mention username="dpasek" user-id="3725273"/> Thank you for reaching out and sharing your experience with us. We've heard from others who have significant issues, and yet their doctors don't seem well educated on this medication. Let me share this information about potential side effects of Ajovy from other users: <a href='https://migraine.com/forums/side-effects-ajovy' target='_blank'>https://migraine.com/forums/side-effects-ajovy</a>. We all react to medications differently, some have found this medication to be life changing while others are unable to tolerate it. Try not to lose hope if this isn't the medication for you. There are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to treat migraine!! Most of us are on a combination, I sure am! How are you doing today? Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
itsmyhead Member

Hi friends, I received another AJOVY shot November 16th. I have 'not' noticed any change in my Migraines. I got one (M) last night/morning and had to take a Naratriptan 2 total. Still have bad vertigo and other annoying (M) symptoms), you all know what I mean. Went to Teva website and noticed this was not tested in people over 50. Great, I always wanted to volunteer, for something. 😣 There is still constipation which my psyllium caps help. When I walk; it feels like I have a loose rock bouncing around in my head. That is new for me. I have battled Hypothermia for years, now hot flashes around 9 PM every night. Too bad this can't erase the obvious signs of aging. I am not sure what I will do. I do not understand why the prior shot lasted as long as it did. I hope all of you get fewer (M) in the coming new year.
1. Holly Harding Member
 
 <inline-mention username="itsmyhead" user-id="3734031"/> HI there- thanks so much for giving us an update on your second Ajovy shot. Interesting about your not finding documentation of it being tested on those over 50. Definitely have heard that constipation is one of the primary side effects that are reported with a number of the CGRPs. Do you think you'll proceed with a third Ajovy injection. It's obvious you do your research so I'm assuming you already are aware how the CGRPs differ- but thought I'd at least share with you this piece which shows why/how Ajovy and Emgality are different from Aimovig: <a href='https://migraine.com/living-migraine/some-cgrps-work-others-dont' target='_blank'>https://migraine.com/living-migraine/some-cgrps-work-others-dont</a>. So, if you chose to try another monthly injectable because Ajovy wasn't working, you might want to try Aimovig. Of course, these days there are a lot of different delivery systems and types of CGRPs (pills, infusions- ones that are preventatives, others that are rescues, etc). This resource gives a good overview: <a href='https://migraine.com/cgrp-new-direction-migraine-treatment' target='_blank'>https://migraine.com/cgrp-new-direction-migraine-treatment</a>. I'm with you that this is a tough road - and appreciate the kindness and compassion you extend by hoping we'll all have a lighter load in the coming year! Back to you. So glad you're with us and hope you'll keep in touch. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
itsmyhead Member

I am still suffering terrible Vertigo from last Migraine. Now seeing a Dentist today (new) to see why I am having severe pain in recently crowned upper left tooth. No I have never had TMJ. But I need a second opinion since the other dentist wants to inject my cheeks with something (NOT).Pain 'only since crown' work done. I forgot to mention what I call floating chest pains. Above rib area. Can this be yet another symptom. I know, every little thing and you wonder WHY? Now that my Fibromyalgia seems to be triggered by the cooler wetter weather, this is the first time in years. I am truly worried about getting another shot of AJOVY or any other CGRP fix. I hope that some of you are having better days. No one really understands the suffering other than another Migraineur.
1. Holly Harding Member
 
 <inline-mention username="itsmyhead" user-id="3734031"/> Interested to hear how your dentist appointment went? I don't know what they are talking about injecting into your cheeks? Though I have had Botox injected into my jaw as part of my migraine treatment. Have you tried Botox yet? I'm assuming you probably have as you've been on such a long journey. And yes, when you have migraine (especially coupled with fibro) it does become a thing where you wonder about every sensation. We really tune into our bodies. With migraine, we must, because we know we will have more luck stopping an attack in its tracks if we treat it at the first sign of the attack - so we listen to our bodies for any little sign. It's important that we listen to our guts, too - so if you are really hearing yourself saying you are deeply worried about another Ajovy shot, then perhaps it's a good idea to listen. Sorry to hear your doctor isn't really hearing you until there is a wave of others reporting the same issues. Again, you are the one who lives in your body and is very tuned in to all the sensations. We are here to listen to you and honor your feelings. So very sorry to hear the vertigo is continuing. How do you manage that symptom? Thinking of you- Holly (migraine.com team).
itsmyhead Member

By the way, my Dr. Is a Headache Specialist. Only one In my town, I have seen 'dozens' over the years East coast and West. Tried everything even the stuff that has no relationship but have been tried. Had some bad reactions to this stuff, BTW. He does not accept any of my side affects until months later after a few others reveal the same info.