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Have Your Migraine Attacks Evolved or Changed Over Time? – Part 1

We asked our contributors a series of questions during Migraine Awareness Month. We asked, “Have your migraine attacks evolved or changed over time?”, and here’s what they had to share.

Sarah

Cyclical migraine attacks

“My migraine attacks are cyclical, which I’ve actually started viewing as a good thing because they do not respond to treatment. Some years, they are constant— symptoms exist from the time I wake up until I go to bed, without ceasing. Other years, there are short periods between attacks of maybe eight hours or a day or two. Every once in a while, I get a break, and the attacks become, very briefly, episodic. At that point, I’ll get maybe one or two per week.

There appears to be a very specific timeline for this cycle and these changes, but I’ll have to go through the cycle one more time before I’m sure about it. At least now, however, when I go into a truly intractable period of constant attacks, I know that—eventually—it will pass. This makes it so much easier to cope.”

Lisa

Increase in migraine attack severity

“My migraine pattern is constantly evolving. In my childhood and most of my teens, my attacks were occasional. They started as ‘neck-aches’ and came mainly with light sensitivity and allodynia. I remember telling a teacher my hair hurt. I would try to ignore the pain or would lie down and sleep it off. In my twenties the attacks started to become more severe. Steady head pain turned to throbbing pain and I started to get other symptoms such as food cravings, dizziness, and fatigue. The attacks started to bleed into the next day and I would have occasional rough patches where I’d worry they wouldn’t stop — but they’d always clear up.

Turning chronic

When I was 27, though, they started ramping up even more and I had the most painful and severe attack of my life. It lasted for about a week and included extreme dizziness, brain fog, piercing pain, light and sound sensitivity (my ears hurt because things sounded so loud), and periods of very low emotions. At that point they turned chronic and I had attacks daily or near daily for a stretch of about half a year, and was chronic for about one to two years (it’s hard to tell exactly when I switched back over officially since it was gradual). I also went through a period of dizziness and vertigo where it felt like I was on board a ship (ahoy, mateys?). Since then my attacks have decreased and I’ve even had migraine-free periods of a month of two. The severe attacks are a few times a year and the moderate and mild attacks are monthly to weekly. I also picked up another type of headache, called occipital neuralgia, along the way.”

Katie

Aura changing over time

“Yes, my migraine and symptoms have evolved over time. I was diagnosed at age five with migraine with aura. At that time, I remember the visual aura looked like a dragon. As I grew older, my aura is now a crescent moon shape with zig-zagg lines. At age 30, I became chronic. Now it’s rare for me to have an aura since migraine is always present. But when I do get an aura now it means I will be incredibly incapacitated for days.

Olfactory hallucinations

I’ve noticed that because I am chronic, I have learned to listen more to my body, so I think I am more aware of the changes in my body that are attributed to migraine disease. I experience olfactory hallucinations– which is a fancy way of saying that I smell things like cigarette smoke, burning tires or trash that isn’t present. Sometimes I double check with the people around me to see if the smell is real or just something I am smelling. It’s a dead giveaway that in the few days or even hours, I’m going to get hit. Occasionally, I will have numbness and tingling on one side of my body that I’ve never had before. I monitor it closely and have discussed it with my doctor.”

Stay tuned for part II of the advocate answers to this question!

Comments

  • Jules78
    12 months ago

    I remember getting my first migraine in 3rd grade. At the time I couldn’t understand why I Had what looked like a million small strobelights going off in weird directions in my vision. After the “aura” would dissipate, about a minute after the pain would start. Usually accompanied by nausea, weakness and sensitivity to bright lights. The symptoms and the pain happened every single time I got the “aura.” Without fail. Sometimes, throwing up or having a bowel movement would help a bit. This happened for years. I never went on medication from a doctor or anything. Later on in life, I started realizing caffeine was a migraine fighter. So at work I’d ALWAYS have a can of redbull and Excedrin migraine ready in case.
    Now, what is interesting is, one day while in college back in 2000, I was getting ready to go party and I got hit with aura. I realized quickly, that there would be no partying for me so I immediately went to my dorm room, shut the lights off, got a cool rag to put over my eyes and got under the covers. Well, when the aura went away, the pain never came! It was strange. Over the next 5-6 years, the migraines would sometimes come after the aura and sometimes not. Fast Forward to the present day, and I rarely get the pain and nausea associated with the onset of aura. I get the aura sometimes, but never the pain that used to come with it. I still drink that redbull and take two Excedrin migraine pills just in case, but I cant understand what happened. Not that I’m complaining but that’s what has happened in my case.

  • Sharonc
    1 year ago

    My migraines have changed a ton over the years. As a child I got a lot of headaches and abdominal migraines. In my teens I would get migraines with auras. The aura was a bright flashing zigzag in the edges of my vision. As a young adult they were frequent with tons of headaches in between. In my thirties, my migraines calmed down and they only happened about four times a year and they only lasted about four hours, although the pain was intense. In my mid forties they turned chronic. I had a migraine that lasted a month before I could get him to a neurologist. They became very severe and intractable. All the other symptoms became more severe, too. I only occasionally get an aura, and it is usually just floaties in my vision. I can have my prodrome last a few days and it can include heart palpitations. For that first year I went chronic, I would have to take steroids at least once a month just to break the cycles and avoid taking too much abortives. While I am still considered severe, I am better than I was 3 1/2 years ago. Botox, Cefaly, and other medications have the intensity and duration at a more tolerable level.

  • MarciaCooper
    1 year ago

    I have had two treatments of Botox and my migraines are less severe and don’t seem to last as long. I will have a third treatment on February 6th and am hoping they will get even better or, to be optimistic, be gone!!!

  • JanetH
    1 year ago

    I used to get olfactory hallucinations, mainly of petrol products (raw gas, lighter fluid). Thankfully, those are no more. The pain has evolved, and also ratcheted up somewhat. I used to get primarily neck pain. Perhaps I wasn’t aware that facial pain and nasal congestion could be part of migraines, because I’ve wondered whether at times when I thought I was having a sinus infection, it was more migraine-related. I do have allergies, but I’ve been seeing a specialist for those for years, so have meds for that already. For the past few years, I’ve had more pain in my temple and near my left eye (since my headaches are usually on the left side). I still work full-time, and drive, although now I am not comfortable with high speed expressway driving, so that’s a limitation. I also now experience some nausea with headaches, along with diarrhea. For years, it was diarrhea, but not so much nausea.

  • Ellifane
    1 year ago

    I started having migraines at puberty but didn’t know it. I wasn’t diagnosed until my 20s but it was occasional. Over time, my attacks increased and so did my triggers. This year, I have more migraine days than not and nothing seems to help right now. Three weeks ago, I woke up for the first time in a very long time with the worst migraine. I had to talk myself into getting up and getting medicine and an ice pack. I can’t remember the last time I had anything like that and this is a new migraine. I seem to keep getting worse and I’m hoping that the new drug on the horizon will be the drug to end all drugs. Hope is hard, especially right now when I suspect that the barometric pressure is my trigger. I know I’m not alone but no one knows how to…..pretty much fight the weather.

  • litoria76
    1 year ago

    I started having migraine around 8 or 9 years old. Then it was extreme light and sound sensitive and feeling like my head was going to literally explode but were sporadic. When I was around 15 or 16 I started getting migraines which felt like someone buried an axe into my skull that occurred every day or every other day for 6-8 weeks at a time. I would come home from school and go to bed. In my 30’s they came back after a few years reprieve and were 3 or 4 days per week until 3 or 4 years ago when they became chronic with aura including double/blurred vision, stabbing eye pain, dizziness, fatigue, olfactory hallucinations, inner ear pain, tinnitus, nausea, and dizziness – for 25-26 days per month! I usually wake up with them so the trigger is unknown and don’t respond to treatment…

  • Luna
    1 year ago

    Forgive me for being a little rambly today.
    Am a little over half way through a month drug holiday and am now doing better than expected. Tomorrow might not be so good after today. I have a neck problem along with the rest of my spine problems. My pcp thought occipital neuralgia and has sent me to a neuro-surgeon. Today I lived through MRIs of cervical, thoracic and lumbar spine. Noisy!!! Glad I wasn’t extra sensitive to noise today. I can’t trust my ability to drive but fortunately have a neighbor that has been driving me to appointments. My migraine symptoms have changed significantly and I feel I need better answers about whether it is just migraine or something more. The pcp is useless. Don’t know if he really thought occipital neuralgia or is just going along with what I suggested to be able to send me on. He really disappointed me in not realizing after all this time the difference between brain sensitivity and respiratory allergy. Anyway, I want to find someone who knows something and can try to make sense of my situation but first the spine assessment then on from there. Hopefully I can find some answers that make sense. Courage.

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