Emgality and Trokendi XR
After a few months, the side effects of Trokendi XR (100mg once a day) have subsided as have my migraines - not completely, so my neurologist has added Emgality. Anyone else here taking both? Any comments, thoughts would be appreciated. All I know it's expensive for us Medicare folks!
Hi mortician510,
Thank you for sharing that with us. I'm not taking either medication, but have heard good things when taken together.
Hopefully others will be along shortly to share their experiences with you.
Fingers crossed and hope you have a low pain day,
Nancy
My wife has started Emgality and developed severe mid-back pain. Has anyone else had this happen? we have done xrays, CT scan and MRI and nothing shows. The only thing i can contribute it to was the Emgality. She started the injection shortly before the pain started. PLEASE HELP.
Hi MarkT,
I'm so sorry to hear about your wife's back pain. Good to hear her tests came back OK. I'm not taking this medication, so hopefully others will be along shortly to share their experience with you.
Could it be muscular? Would physical therapy help? Does anything relieve it? Sorry for all the questions.
Let me know how she is doing,
NancyIm
On emgality. First dose 1/25/24, second ( monthly) dose 2/25/24. I thought I’d tried everything until I came upon this forum. I’ve taken loads of stuff but I’m
Unfamiliar with trokendi. I’m going to look
It up. So far, emgality has done nothing for me, positive or negative. I’m very scared about the side effects of all these strong meds but I know I can’t live with migraine. I find drs just dish out stuff and don’t let you know side effects unless you persist and most certainly don’t weigh out pros and cons with you. I had remission with Botox 2017-23 ( before that 24/7 mig 2015-17). Now I guess I just failed it. I try not to let myself get too afraid, but deep down I’m terrified. I know I won’t hurt myself, but the prospect of living out the rest of my life like this doesn’t thrill me too much. I’m trying to keep hope alive and persist, but I’d be lying if I said I hadn’t researched the various options for “ dying with dignity” that my multiple citizenships allow. Not thinking of anything in the near-to-middle future, but the thought has crossed my mind. If I’m not supposed to say that, moderators plz alert me and I’ll remove the post. Not going to hurt self and DO NOT WANT TO TAKE THAT OPTION. I’m actively embracing hope in every way I possibly can and at every opportunity I have. But the thought does occur to me.
I am on Emgality (monthly) and Qulipta (daily), and Revow (abortive). I had some response to Emgality, but not enough. The addition of Qulipta has helped a good deal, so it may be worth asking about. I did get some push back when I left the migraine clinic for the regular neurologist at the insistence of my insurance, but once I walked them through my experience and sent an email stating I knew the side effects can get worse with both, they agreed to continue it.
I was in tears at the thought of losing the little bit of progress I've made. After more than 30 years of migraines and well over a decade chronic (and at least 9 years of 27+ days a month), even being able to pick my kid up from school is progress. Even now, a lot of days that's all I can do, but for me that's huge progress, and I hope it gives you hope that the right combination can be found.
It took me over 2 years and a administrative hearing to get my disability, so don't give up! Having an attorney helps with this, so if you don't have one, find one. They will take cases on contingency, so you don't pay them a dime. If they win, they take a reasonable percentage of your initial check (it is back pay to the day you applied); if they lose, they get nothing. There is comfort in knowing a pro is willing to gamble their time on your case, since they won't do so if they don't think it clear they will win and they will get paid.
Good luck, and I hope you find relief.
Thank you so much for joining the conversation and sharing your support, tips and experiences with us.
I'm happy to hear you have a good migraine management plan in place after all those years of constant pain. I understand how exhausting and frustrating that is.
I couldn't agree more with you about SSDI. Using an attorney is very beneficial and they don't get paid unless you win, I believe.
I wanted to thank you for being part of our community and I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member
