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Migraine experience changing with age; feel like I'm starting over

History: I'm almost 52 and have had migraines for as long as I can remember. Almost everyone on my mom's side of the family has or had them--my mom, her mother, her brother, her sister, and several of my cousins and at least one of my brothers, though our experiences are all different. Mine had always seemed to be heavily related to my periods and this seemed to be confirmed when they decreased after my hysterectomy (ovaries and tubes as well) at age 47. I have PCOS, and the hysterectomy revealed endometriosis and large fibroids. I was never able to conceive. For a while, I would say (when asked) that I got a lot fewer migraines since the hysto but when I did get one, it was much more severe, which was true for a while but seems to be changing.
Lately I have been noticing that I would have a lot of the adjacent symptoms--exhaustion, break-through depression, neck and shoulder pain and stiffness, increased brain fog, confusion, excessive sleepiness--even though I wasn't really getting around to having actual head pain as I used to experience it. (I guess that's a silent migraine--doctor never mentioned those!) I've also discovered other things that I always thought were just normal are actually part of migraine--a big one being I had never recognized that thing where it looks like bright little gnats flying all over my field of vision all lit up like neon are one of the things meant by an aura!!! I always thought I didn't have an aura, but I've been having those little bright gnats my whole life, and frequently! I'm realizing that congestion I always thought was completely caused by allergies is partially attributable to migraine, and confusion and not being able to find the right word can also be symptoms of migraine instead of just getting old. My olfactory hallucinations have turned up again, too, which had not bothered me after being the cause of my initial diagnosis with my neurologist (as opposed to my family doctor) of migraine, but have recently flared up again.
Although my medication history for migraine is long, it is fairly simple. Preventative began as Topamax and switched to Zonisamide when I started to legit feel like I was getting Alzheimer's! Rescue started with Maxalt, then Relpax, then insurance stopped covering Relpax so I went back to Maxalt. I've had botox once and nerve blocks a couple times. Hard to tell how much those helped.
The most baffling change has been to the experience of head pain itself. Previously, it almost always originated at a single spot behind my right eye and radiated from there but I always felt like if I could reach in and pluck out the offending blob of gore (as I imagined it), it would go away. A scar (dent) on my scalp just above the spot (from a dog bite as a child) would sink in more deeply and seem to branch into more fissures during these headaches. On rare occasions, a headache would start at the base of my skull on the left side and those would encompass my whole head and were much worse, but they didn't happen as often.
Now, I have noticed that I have tender spots on my scalp that correspond with the pain inside the brain and while massaging the tender spots is extremely painful, it can lessen the interior pain. (Sometimes the tender spot is one I recognize as one my doctor identified as a nerve route. Occasionally a pimple-like bump will erupt and because I already have three Pilar cysts I fear another developing and do everything I can to pop it before it grows. As soon as the bump is gone, the headache recedes.) I can also press on different parts of my skull--brow ridge, occipital bone, behind the ears, crown, etc. and FEEL and HEAR movement! It can sound like a slight crunch as if the plates of the skull are stressed by outward pressure and pressing hard forces them back where they belong, the relief being similar to cracking ones knuckles, though much more subtle and incremental. Sometimes I can tell this is related to sinus pressure but NOT ALWAYS. No manipulation fully relieves the pain, but I have tested pressing and massaging my head when I do NOT have a headache and there is no movement, no sound, and no tender spots. I have tinnitus and can frequently hear my eyes move, which I just read is part of someone else's migraine experience, but I never associated it with mine before.
The other big life change that affected my migraine experience is a car accident eight years ago. I had a concussion and post concussion syndrome, which a doctor declared resolved. The day of the accident, a sharp, icepick-to-the-right-eye migraine came on at the instant of impact. I found work (as a bookkeeper) extremely difficult after that because of brain fog so severe I couldn't remember how to do simple things. It took four times as long to do all my normal tasks and I went home from work every single day with a migraine. I had to quit work. (Which was actually a blessing so I could be at home for our daughter's last years of high school.) Cognitive testing declared me undamaged (IQ 13😎 although I FEEL slower than before, but the process of trying to get disability was too daunting. Therapist (because all the physical doctors said my symptoms were due to "anxiety"😉 asked did I want to spend my energy fighting for disability or did I want to get better? Thankfully, we are able to get by on my husband's income. Now that I don't have a menstrual cycle or my very stressful job, I find my biggest triggers are weather changes, changes to caffeine intake (my intended limit is one serving in the morning and no more, but sometimes if I need to get a lot done I will drink more and then pay for it later), stress, sustained loud noise, too much bright sun, allergy attacks (the effects of the itchy eyes and sneezing), and too much dark chocolate. That last one is hard, because that is also a comfort food!
Thank you for reading my long story. I guess I just wondered the same thing everyone else does: am I normal? Has anyone else had this experience (or some part of it?) If I don't go somewhere because I feel yucky but don't have a headache and my husband says I have a migraine, has he lied? How does brain pain make head skin hurt??
Picture is my best treatment.

  1. Thanks so much for posting your experience with migraines, . You have shared a lot of great information about migraines. To answer your question, I don't think that it's a lie to say you are suffering from a migraine if you don't have physical head pain. Migraine is a complex disease, and physical pain is only one symptom of many. For example, here is a list of some symptoms people frequently experience:

    It also sounds like you may be experiencing allodynia when you describe the pain on the top of your head. We're not doctors, and we cannot diagnose this symptom for you, but we can provide you information about what it's like. Check out this article for more info:

    We also have a great article on visual auras that you may resonate with here: I can understand why you might not think they were related to your migraines. There are so many potential symptoms, it's almost impossible to recognize them all at once!

    Lastly, it may be helpful to learn about the different phases of migraine. Each one comes with unique challenges. Knowing roughly which phase you're in can help you prepare for the next, and accurately treat the current phase you're in:

    Wishing you well, and please don't hesitate to post any questions or concerns you may have. We are here to help! - Cody (Team Member)

    1. Thank you for your reply and links. I read several of them (so far) and am really struck by the allodynia! I had just recently begun to notice a weird stinging pain in my toes and a couple other spots when very lightly brushed that does not happen when touched normally. I had no idea that could be migraine related! I've had a real challenge getting over this most recent one (actually rescheduled my doctor appointment today!) but it helps knowing these changes to my experience are not unique.

  2. thank you for taking the time to share your story. Giving voice to your experience can be really healing, and helpful for us to realize that we're not in this alone. That said, I'm of course sorry to hear all that you've been through and that you're currently dealing with.

    I see that Cody has provided some great resources. I hope that you find them helpful We have a lot of resources here in hopes that they can help to provide some information or connection with others. As Cody said, we are here to help.

    And how you summarized it all at the end with the question, "am I normal?" is so relatable. Migraine shows up differently for each of us, so it's challenging to know sometimes, what is the "normal" experience. But whatever your experience is, it's true for you. So I hope that the information shared here helps to validate the struggle with this experience and to shed some light on your questions.

    Last but not least, I love the picture of your best therapy. So sweet. <3 We're sending you both lots of virtual support and encouragement.
    Alene, moderator

    1. My belated thanks for your reply. You are absolutely right that writing it all down and sharing it helped to organize my thoughts about it all in my own mind and clarify details I had only given fuzzy thought to before. I am so relieved to find that having my symptoms evolve is normal. I guess I sometimes felt a little like I wasn't "allowed" to still have "migraine days" (that is, days where it is excusable for me to be very unproductive and need a lot of help and care) since I had expressed an improvement after my hysterectomy. As if having a renewed bout of them meant I had to have regrown my uterus or else I was just whining!! (Rolling my eyes at myself!) Can being extra hard on ourselves be classified as an actual symptom? 😀 Thanks again.

  3. Just want to welcome you to the community, . You've been through a lot! Everyone is different, and I don't think there are two people here with the exact same symptoms, or even the same treatment regimen. But I have seen virtually all of your symptoms mentioned here before, including the crunchy skull. You are in good company with us!

    Migraine often changes throughout one's life. For many women, menopause is a big change period, but even without that, changes due to age or just migraine quirkiness are common. I'm curious, are you on any kind of hormone replacement therapy? And I'm sorry about the concussion. That's also a common change agent around here.

    Do you feel like you're getting good care from your doctor? Whenever possible, we encourage folks to work with a board certified headache specialist instead of a "regular" neurologist, as they have more extensive migraine training. There is a decent directory at if you're looking for someone new.

    Glad you found us and I hope we can be a good source of support for you. Talk soon! -Melissa, migraine team

    1. What an adorable doggie! Thank you so much for sharing that photo with us!
      I have a ten pound Chihuahua mix who is a wonderful companion too!
      I hear you about feeling disloyal about seeking out help from another doctor. A second set of eyes is never a bad thing, and it doesn't mean you have to completely switch doctors. Getting a second opinion from an expert doctor is never a bad thing!
      You're not alone in experiencing an uptick in migraine attacks due to changes in the barometric pressure. We have information on this here;

      I've also found WeatherX ear plugs to be beneficial. They have app that can alert us to changes in the pressure so we can prepare as much as possible for upcoming shifts. Here is their website;

      Let me know what you think and I'm sending pain free wishes your way, Nancy Harris Bonk, Patient Leader/Moderator Team

    2. - It's understandable to feel a sense of loyalty to a healthcare provider who has been supportive and helpful in managing your health concerns, especially if they were instrumental in finding relief for your migraines. Building a strong rapport with a healthcare provider can foster a sense of trust and comfort, making it challenging to consider seeking care elsewhere. Nevertheless, it is vital to prioritize your health and well-being above all else. It's important to ensure that you're receiving the best possible care and exploring all available options for managing your migraines effectively.

      Seeking a second opinion or consulting with other healthcare providers doesn't necessarily mean disloyalty; rather, it's a proactive step towards ensuring that you're receiving comprehensive and personalized care.

      You can approach the situation by expressing your appreciation for your current doctor's support and expertise while also expressing your desire to explore additional perspectives and treatment options. A compassionate and understanding healthcare provider will likely support your decision to seek out other opinions and collaborate with you to find the best course of action for managing your migraines.

      Just yesterday I saw my neurologist - we have tried so many ways to treat my ever-changing migraine symptoms, and discussing even more when near the end of our visit he says he wants me to get a second opinion. I was knocked back a bit because I really like his approach toward treatment, and how respectful, helpful and resourceful he is.

      I send strength your way to guide you. Don't forget you are your best advocate. Ask for what you need. Thoughtfully, Rebecca (comm moderator)

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