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.