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Migraine and Optic Nerve change


I was taking amitriptyline for about 4 years for chronic migraine however I recently developed an allergy to it and I am now relying solely on Botox for pain management.

In the last month my migraine pain has become quite bad, to the point that I am going to ask my neurologist for different medication. However, a few weeks ago I had a routine opticians appointment and discovered that my optic nerves have 'changed shape', become 'fuzzy' and look 'suspicious'. I have had a CT-scan and I am currently waiting for the results from the eye department of my hospital.

I was told the results would take about a week, and it will be two weeks on Tuesday and I have had no news. I do not know whether to wait for the results before I contact my neurologist or not?

I am feeling quite overwhelmed, and wondering if anyone else has had a similar experience? Could it be a side effect of the migraines?

Also, any words of wisdom would be greatly appreciated!

Kindest regards

  1. Hi

    Thank you for reaching out and sharing your experiences with us. I hear how frustrating it is to live with migraine pain, you're not alone. Let me see what information I can offer you that may be beneficial.

    The first thing that comes to mind is it's not uncommon for our medications to stop being as effective as they once were, another frustrating part of living with migraine disease. This has happened to me several times. Don't lose hope, 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. This link has information on where to start;

    I'm not sure how long you've been getting Botox but for some it can take three, four maybe more, rounds of injections before we see a reduction in migraine frequency and severity. While not a cure (there isn't one right now) prevention medications can go a long way in helping prevent attacks.

    May I suggest you give the doctor/hospital a call today to find out the results of your CT? It's been over a week so I wouldn't hesitate to contact your doctor. Sometimes we need to be pleasantly pushy to get the care we need. Changes in optic nerves can have an impact in our head pain if related to something called intracranial hypertension, formerly called pseudotumor cerebri. This is a condition where the cerebral spinal fluid doesn't reabsorb properly and becomes to high creating symptoms such as head and neck pain. Some cases can included changes in the optic nerve that quick attention. Let me share these resources with you; and

    It may be time to seek out a doctor who is a true expert in treating migraine and headache disease. These doctors are 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;

    I completely understand about feeling overwhelmed, living with chronic pain is exhausting and frustrating. Please know we're here for you. Will you let me know what you think and keep me posted? Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Team

    1. EmmaB, Nancy has given you a lot of great resources and information. She is truly an incredible advocate. I'll just add that you are not alone in your experiences. This community is full of people who understand migraine disease and the various issues that can come with it. You are among friends. We are here to give you support, guidance, and shared experience. Let us know what your doctor says. Never be afraid to be "pleasantly pushy," as Nancy said! Warmly, Cheryl team

      1. - HI there- thanks so much for sharing some of your journey with us. It sounds like a really challenging time and I can understand why you'd be feeling overwhelmed in waiting for the CT scan while experiencing a significant uptick in migraine attacks. I might suggest that you go ahead and reach out to your neurologist to let him/her know the situation - that you are awaiting these results but wonder if there might be a suggestion regarding a safe preventative treatment that could be explored in the meantime. Additionally, during this wait, I thought I'd send you some resources we have that community members have shared about their experiences with optic nerve issues and migraine. Perhaps you'll find something in skimming these articles that will resonate with or speak to you: I also echo what Nancy said that asking for those results can't hurt. Thinking of and here for you - Holly ( team).

        1. I maybe be able to help you to ease your pain as I've gone through all my life. 17 years I didn't have migraine already just headache here and there. Since 3 weeks ago, a sudden nasty attacked and still having it but so much relieve now. All should be gone soon.

        2. So glad you are experiencing some relief after getting hit so hard with that bad attack. Everyone is so different in what triggers this condition and equally different in what works to give them relief. It's wonderful that you've found something that works for you. Warmly- Holly team.

      2. Hi there -- I just wanted to check in and see how you are doing. Did you ever reach out to your doctor or get the results of your scan? I hope that you have some answers now and have started the process of finding some new medication that's more effective. We are thinking about you and sending all of our support! Try to take things one day at a time. Hugs to you! -Melissa, team

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