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Migraine Every Day for 1.5 years

Hi all,

Hope you're all well, has anyone ever experienced a continuous Migraine condition where the Migraine never goes away for 1.5 years, i.e. you get it all day every day. The symptoms change day to day but the Migraine never goes away. There are no obvious triggers.

The main symptoms are a sickly feeling coming from my head or an electrical type headache that feels like a mini seizure, either but particularly the latter make makes basic functioning such as talking, texting, working etc impossible.

My neurologist has prescribed gabapentan 2700mg per day, topamax 150mg per day, Ajovy, Botox, which have led to a minor overall improvement i.e. approx 10-15%.

Has any come across such a case previously. I.e. continuous Migraine every day? Any advice you can share would be greatly appreciated!!

  1. I understand just what you are talking about. My husband suffers from chronic, intractable migraine disease. He has gone for several years with constant daily migraine attacks similar to what you have described. He was also prescribed Gabapentin, Topamax, Ajovy, and Botox. He has since discontinued all of those therapies due to side effects and insurance issues. He also suffers from New Daily Persistent Headache which is a constant recurring headache, but it does not have the severity of a migraine headache. It can, however, transform into a migraine attack if he is not careful to keep track of its progression. He is currently taking Emgality shots each month and uses Nurtec ODT combined with a Nerivio device to help manage his attacks. He has found Emgality helps with the pain aspect of his attacks but does still cycle through the attack cycle on a daily basis still. He found that over time he has been able to cope and still function with pain levels as high as a 5 but knows he must take his abortive measures as soon as he realizes that the attack is progressing. Just know you are not alone. The right therapy regimen is out there for you! Warmly, Cheryl team

    1. Hi Cheryl,

      Thanks so much for your message, I really appreciate your feedback, I’m really sorry to hear about your husbands illness and hope that things get better for him too in the long term. Thanks for sharing the details of the treatments that he has been receiving that’s a great help, I’ll keep those in mind the next time I’m meeting with my Neurologist. Thanks again for your support!! Means a lot!!!

    2. it is truly my pleasure. We have a lot of information available within the community for you to examine. I see Nancy has given you some great links to help you find a doctor that specializes in headache disorders too. These are great resources to help you get the most thorough treatment for the management of your migraine disease. As always we are here for you! Warmly, Cheryl team

  2. I hear and understand how frustrating it is to live with migraine pain 24/7. It sounds like it may be time to seek out help from a doctor who is a true expert in treating migraine and headache rather than a general neurologist. It's not that general neurologists aren't fine doctors, rather they have a hard time being experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Doctors who are true expert in treating migraine and headache disease are certified in headache medicine and can have a huge impact in our care. Let me share information on this with you. Will you let me know what you think?
    Hoping today is a good day, Nancy Harris Bonk, Patient Advocate/Moderator Team

    1. Thanks Nancy, Have a lovely weekend!!

    2. You too!
      Nancy Harris Bonk, Patient Advocate/Moderator Team

  3. I am sorry to hear you suffer daily from such debilitating symptoms, . The advice given above is from some of the best advocates here in the community. Reading your story, I am interested to know if you've had your neck/spine examined recently. Have you got neck pain and/or spasms along with daily chronic, intractable migraine disease? What about your sinuses? Have you had any imaging of your head/face/sinuses? Interested if there is a "trigger" or condition you are unaware of. Just a thought ... as I have chronic pain from neck/spine injury/disease that triggers my migraine disease. Hoping you find answers. Rebecca (comm advc)

    1. Hi Rebecca, Thanks very much for your message, it’s funny you mention about neck/spine, I’m seeing a Generalist whose looking to get some imaging done on both do see if there are any issues, to the best of my know there aren’t any issues, at least none that I have noticed on a daily basis. I have had my head/sinus/face checked and they are all clear, I’m arranging to get some allergy testing done and have recently had some blood work done which came back all clear. Thanks for raising these questions though, they will be very much to the forefront of my mind going forward!!! Thanks again appreciate it!!

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