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Panicking

I’ve been dealing with chronic migraine for two years. However, about six months or so ago, my typical migraine pattern changed. It felt strange and different, which made me feel a bit concerned, so I had my neurologist order an MRI around August in hopes of ruling out anything dangerous. To my relief, the MRI came back normal and life went on.

Well, now the pattern has changed again along with some of the symptoms and I’m starting to feel panicky about it all over again. Part of me wants to ask my neurologist to order another MRI and another part of me doesn’t for fear that she’ll be annoyed with me or think I’m a hypochondriac, especially because I had an MRI just a few months ago.

Also, for the sake of clarity, I’m not over here self-diagnosing and looking up the worst case scenario on WebMD or anything like that. Sure, there *are* a few specific things that come to mind, but I’m not allowing myself to give those types of things too much thought. I just need reassurance.

Has anyone else gone through anything similar? If so, how did you deal with it?

Thanks!

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Comments

  • Holly H.
    2 years ago

    Danielle C: I have had chronic/constant migraine with aura since mid-2010 (from episodic ones previously). Migraine with aura stayed, but then other symptoms came… on top what “what was.” In my case, my neurologist diagnosed the first major addition as chronic/constant ocular migraine also. Then the first of this year, the pain and systemic effects went to a whole new level; I was additionally diagnosed with exertion-spiking brain stem migraine. So, I now have chronic/constant 3 types of migraine; spiked individually or collectively by various factors.

    Here are some of my lifestyle changes (since I can’t take any kind of abortive or preventative meds).
    With these, I have had a bit of decrease to where I am functional a lot of the time now (although never pain-free nor asymptomatic). Note that this is not a comprehensive list for my particular mess; it’s just a good starting point.
    1) I make most of my own food made from real, fresh food ingredients, including my own bread, almond butter, etc.
    2) Deleted prepared/processed food and meat; fresh meat without sauces or most spices.
    3) Deleted vinegar anything, pickled anything, aged cheese, milk products, sauces, and most spices. There are other particular-to-me food big-time sensitivities that I would need to stay away from nevertheless, such as artificial sweeteners and cinnamon.
    4) Deleted all nightshade vegetables and anything made from them.
    5) Deleted typical snack foods – sweet, salty, and savory.
    6) I strictly limit myself as to environments that have the potential for inducing a spike, as in, movies, large echoing rooms, any kind of lights that flash or flicker, or places that have many people milling about, etc.
    7) Deleted 99% of all TV watching, as all flat screen TVs are lit by either LED or fluorescent bulbs – and amazingly the 24/7 horrendous aura has greatly decreased. If I watch anything, it is on my little laptop.
    8) Do everything I can to not see flashing/overly bright lights or loud noises; for instance, strobes or fire alarms = instant spike. Note that when I see a lot of pictures being quickly flashed up on a TV screen – my brain is seeing and reacting as if it is seeing flashing lights.

  • Falcon6
    2 years ago

    You are certainly not alone. My migraine used to always have the same symptoms everytime. In the past few years my symptoms have been ever changing. The latest – diarreah.

  • Falcon6
    2 years ago

    You are certainly not alone. My migraine used to always have the same symptoms everytime. In the past few years my symptoms have been ever changing. The latest – diarreah.

  • DonnaFA moderator
    2 years ago

    Hi Danielle, we’re glad you’re here. Please know that you’re not alone. There has been a lot of conversation here about the changeable nature of migraine.

    You may be interested in reading:
    Migraines, change, and learning to adapt
    Migraine, a.k.a. The Amorphous Blob
    Hurricanes, Pain, Migraines & Change
    Can the change in seasons impact my migraines?
    Hormonal migraine: the basics
    A Discussion – Changes in How We View Chronic Migraine
    Hopefully, something in those will help to dissipate that uncertainty you are feeling.

    That being said, migraine is a neurological disorder, and if there are changes that concern you, or harken to other possible disorders, or cause you inordinate amounts of stress, please talk to your doctor about them. If your doctor thinks you are a bother, a hypochondriac or is in any way dismissive, it might be time to find a new doctor.

    Please know that you’re not alone, as you can see from the articles I shared, many people experience concerning changes. I know that I have shared a lot of information, but I’d like to share just one more: What is a migraine emergency? discusses symptoms that should not be ignored.

    Please don’t be afraid to discuss your concerns with your doctor. And please do stop back and let us know how you made out. We’ll be thinking of you. -Warmly, Donna (Migraine.com team)

  • Not-Again
    2 years ago

    Hi!
    Since my migraines went from episodic to daily chronic, I also asked my neurologist to order an MRI which came back with no changes from previous MRIs. I also have recently had a season where my prodome symptoms changed and I made a special appointment to discuss the changes. I think it is good common sense to make notes of changes and discuss them with your care team. I agree with Donna that if your doctor dismisses the information you give them, it is time to look for another one. All that to say, I would say your reactions are normal and being an informed and responsible patient. Best of luck!

  • DonnaFA moderator
    2 years ago

    Hi Not-Again, thanks for weighing in! Your input is invaluable! We’re so glad that you’re here! -Warmly, Donna (Migraine.com team)

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