What are my alternatives now?
Hi,
I know this is long but the experience may help other sufferers.
I have had SEVERE Chronic Classic Migraines, Mixed type for 42 years. I have had at least 15 headaches a month, 3 of these are "true" Migraines each lasting 4-6 days even sometimes with the pain switching to the other side of my head for another 4-6 days. No Tryptin abortives worked. Only a "Migraine Hat" and tying a neck tie around my head as tight as I could, helped the most. Pain medication also only worked at times and just took the edge off. All I could do was writhe around in bed moaning and groaning, begging for relief. I missed so many vacations, holidays with my family, you know the spill...
I worked full time as a Nurse Manager on a Pediatric unit and also was assigned a full load of patients. I had 2 small children. Functioning with my suffering was almost impossible but, I did it for 23 years and through 2 pregnancies. I fortunately, had the help of my colleagues coming in and working in my place, though most of the time, I had to beg. I took their call when I could in place of covering for me. FORTUNATELY, most of the time, my bosses were understanding but, I always REMAINED on probation with the constant fear of losing my job. I drug myself out of bed until hopefully a replacement could be found around mid morning. My children also required my sick time and vacation for their illnesses whereby I had to miss work. I have frequently wallowed in self pity asking myself, "why me?" It has been such a horrible, challenging life!
That was, until I found the injectable preventatives. What a miracle from God!! I began with Aimnovig and took it for 3 years with only 1 Migraine breakthrough. Until, that is, it began to lose its effectiveness. As an RN, I know that medications can lose their effectiveness over a period of use and maybe stop working altogether. What a bummer!
But, I switched to taking Emgality and it worked for the last 2 years but, not as well as Aimnovig. Again, recently, it began losing its effectiveness. I have resumed daily headaches and had 1 Migraine last week, moderate in intensity.
What do I do now? I am terrified! I have now used 2 preventables. Should I restart back on Aimnovig to see if it works again? Try Anjovy? IDK!
Please God, don't let these come back! I am scared to death of their return. I would rather die than have to suffer so much again.
I also have Chronic Lyme Disease and suffer with joint and muscle pain on a daily basis so if headaches return full force, I think it would just break me. I would rather die than have to suffer so much again.
One thing I can offer sufferers that has made a difference:
1.) From Amazon:
"A Migraine Hat"
(ice bag with liquid that freezes in individual sewed-in pouches throughout. The result are real ice cubes so it is much colder and last longer). It has Velcro for closing around your head. I also use it without the Velcro for just a long bag. I suggest to buy 2 of the longer ones so you can exchange/rotate them out for cold to be continued at all times.
- thank you for sharing your story with us here in the community. You have been through so much when it comes to migraines and headaches troubling you. The only person that can answer the question of what comes next is definitely your treating physician. I sure hope you have had an important conversation with them in reference to your current medication having little positive effect on migraines currently. I do wish others in the community chime in on this conversation and offer up experiences where they too have had to switch and what they went to next. As for treatment options - sounds like another CGRP is in line. Here is an article on treatment options - hope it is useful to you. Ajovy or Vyepti ? Have you also tried the Cefaly device? Some find extremely positive effects from this. https://migraine.com/treatment-options As for the icecap - mine has come in handy multiple times and I can't say enough about how it soothes me when in pain. Wishing you relief and comfort - warmly Rebecca (community moderator) 
Hi
I hear how agonizing this can be wondering and worrying if migraine will revert back to the way it was before. You're not alone in this worry - we get it and are here for you.
It's not uncommon to have our migraine management plan fizzle out from time to time, we're not sure why, it may be the nature of migraine disease, that is purely speculation on my partWhile it's easy to get caught up in the worry of worsening migraine attacks, try not to despair. The good news is there are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to manage migraine disease and most of us are on a combination of these, I sure am. Here is information to start;
https://migraine.com/blog/migraine-preventives-start
Thank you for sharing your success with the migraine hat. We're heard from any who find this an important part of their tool box. I'm a heat person! I hope you let me know what you think and am sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com TeamMy heart goes out to you. I was hit with chronic migraines at age 50 while living in Panama. I returned to the US for help but now at nearly 78 it remains an ongoing challenge. Mindfulness and meditation, yoga, evening walks and work with a nutritionist have been very helpful. Meanwhile since my headache specialist retired, I am not very impressed with a young neurologist who does his best to try different medications.
A deep spiritual life has meant I am able to alleviate the suffering which accompanies pain.
Thank you for sharing your support. It's important to know we're not alone in our migraine disease journey.
It's always a struggle when one of our doctors retires and can leave a big hole, I'm sorry you are going through that. Is it time to seek out help from a doctor more educated about treating migraine disease? While general neurologists may be fine doctors they 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. These expert doctors have additional certification not all general neurologists. Here is more information on how these doctors are different and how to find one;
https://migraine.com/blog/really-find-headache-specialist/
https://migraine.com/living-migraine/neurologist-vs-specialist
https://migraine.com/living-migraine/change-thoughts-new-care
Wishing you a low pain day and I hope to hear more from you, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
I deeply appreciate your speaking to the importance of digging deep - in mindfulness - reflection - acceptance - all the internal work that goes into living with frequent or constant pain. You are so right that managing and navigating a life with chronic pain goes far beyond finding the right medication. Grateful that you shared. Warmly- Holly -migraine.com team.
Thank you for sharing your story with us. I can only imagine how challenging it must have been to live with severe chronic migraines and to balance your responsibilities as a nurse manager and a mother of two. Your perseverance and resilience are truly admirable. I'm also glad to hear that you have found relief with injectable preventatives like Aimovig and Emgality. I think it's understandable to feel scared and uncertain about what to do now that Emgality is losing its effectiveness. It may be helpful to talk to your healthcare provider about your options and whether restarting Aimovig might be a good choice for you.
Please remember that you are strong and capable of managing this challenge, and there is hope for finding a treatment that works for you 😀. Don't hesitate to reach out for support from loved ones, healthcare providers, or support groups like this one. You deserve to live a life free from the debilitating effects of migraines and chronic Lyme disease.
Warmly,
- Cody (Team Member)
