Migraine changes after a stroke

I’m currently in a postdrome, & my head is feeling like a headache could return, so I’m going to keep this short!

Although I started getting migraine HEADACHES at about the age of 11, little did I know just how little I knew about migraine as an illness!

You see, what I had been experiencing, from age 11 until a stroke 6 years ago, was “typical” migraine! Post-stroke, I am now experiencing “atypical” migraine!

This is an experience, I could have PASSED on & wish it had not afflicted me!

I have been encouraged to track the migraine symptoms, which I experience! This never made any sense to me, because previously I had only been urgently aware of the migraine when an aura became visible! Then, I knew that I had about half an hour to get to a dark room, take my Rx med, & hopefully sleep! The ONLY variation to this, was sometimes having to take a second dose of the Rx meds the same day, otherwise what I was experiencing was of short duration & the postdrome was never severe enough to slow me down!

TODAY, my life is quite different! I experience migraine symptoms, which effect EVERY bodily system, so if I were to track them ALL, I’d either be “certifiable” [& ready for the loony bin] OR I’d be a hypochondriac! One person CANNOT keep track of this many symptoms, which cover such a range & scope! To date, I have now had several migraine headaches of 36 – 40 days in continuous duration, which have put me in the hospital! What I have found is the postdrome symptoms, after the headache pain ends, is often worse & often twice as long as the period of the headache pain!

Since I am supposed to be tracking symptoms, what I have personally decided to do is ONLY track the worst 3-4 symptoms, which I experience. I’m NOT in denial about the rest, but that way I know what’s going on for nearly THREE WEEKS EVERY MONTH & I can keep my MD updated on how well the prophylactic Rx meds are doing, as well as the Rx meds, which I take when a headache hits!

Now, I feel a bit more like my MD & I are working on this together, this way! Thus far, my changed approach is helping! I find that I’m not adding additional stress to myself, either — THAT, is very good!!!

The one thing that is quite frightening, is when the migraine symptoms mimic a stroke! That is when I head to the ER, since I cannot tell the difference either!

One thing I’m wondering, is how many other readers have had the migraine symptoms, which they experience, change dramatically [as I did], after having a stroke, TIA, or TBI — I went from solely having TYPICAL MIGRAINE to solely having ATYPICAL MIGRAINE. The stroke I had would be considered moderate in severity!

I am currently 60 years of age, female, & divorced.

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Comments

View Comments (7)
  • carol horemis
    3 years ago

    I HAVE SUFFERED FROM MIGRAINES SINCE I WAS ABOUT 7 OR 8, BUT AT THAT TIME DOCTORS DID NOT BELIEVE CHILDREN HAD MIGRAINES (1940s-1950S) ALTHOUGH BOTH MY GRANDMOTHERS, MY MOTHER, + SEVERAL AUNTS (MY FATHER’S SISTERS) ALL SUFFERED FROM MIGRAINES!WHEN I WAS FINALLY DIAGNOSED W/ CHRONIC MIGRAINE AT COLUMBIA PRESBYTERIAN HOSPITAL THE EXPERIMENTATION W/ MEDICATION BEGAN. IN 2005 I HAD MY FIRST STROKE + WHEN I ARGUED W/ THE NEUROLOGIST BECAUSE I HAD LOW BLOOD PRESSURE + THUS WAS NOT A CANDIDATE FOR A STROKE, I WAS TOLD MY MIGRAINES INCREASED MY CHANCES OF A STROKE BY 25 PER CENT!AFTER MY FIRST STROKE MY MIGRAINES WERE REDUCED, BUT SINCE MY SECOND BLEEDING STROKE I AM HARDLY EVER W/ OUT A MIGRAINE + DOCTORS HAVE NOT BEEN ABLE TO FIND A SOLUTION.THE STROKE SEEMS TO HAVE INCREASED THE FREQUENCY OF MY MIGRAINES AS WELL AS THE INTENSITY. I AM ALMOST NEVER W/OUT A MIGRAINE + THE DOCTORS HERE IN ATHENS,GREECE (WHERE I RESIDE) ARE RELUCTANT TO GIVE STRONG PAIN KILLERS AS YOU MIGHT BECOME ADDICTED + THUS YOU ARE SUPPOSED TO SUFFER IN SILENCE!

  • Crystalrz4
    3 years ago

    Hello. I do indeed have chronic daily migraine,and 4 small strokes to date, with the last one being the day before this past Thanksgiving, and I also have Familial Hemiplegia.
    You hit the nail on the head when you said this changes the game completely. How do you tell the difference between a stroke and hemiplegic attack? You don’t at first. However, if symptoms begin to recede, then it’s hemiplegia. If you notice a weakness of any of your limbs, or facial drooping on one side that doesn’t go away, then you’ve probably had a stroke. Since mine were only affecting one quadrant at a time instead of a full side, doctors weren’t convinced of a stroke at first. Now however, they’ve seen the lasting effects. My right leg was first. As I was driving my friend and I home, on the freeway, I needed to step on the brake and my leg refused to answer. I had my girlfriend grab the steering wheel, while I picked up my right leg, put my foot on the brake and pushed it down. I haven’t driven since then. I not only have weakness, I have drop-foot on that side, and now my foot turns out toward the right as well (I’ve always been knock-kneed and pigeon toed). Next, my left leg and foot were affected. Weakness and drop-foot on that side too. My left upper body and arm were affected next, with my strength reduced in both my arm and hand. Loss of dexterity in that hand as well. Then this past November, my right upper body and arm were damaged by a stroke. Same as my left, loss of strength in both arm and hand (my dominant side), hand dexterity reduced by quite a bit, and my aphasia is still very high. In fact, it is worse now than with my other three.
    My migraines are worse as well. I’m never without a migraine, and they are never below a six. I usually don’t take my medications until they are past eight. However, I’m having more days above eight than I had before. I’ve found the only way for me to manage, is day by day. Some days, hour by hour and/or minute by minute. I use everything that I have learned to try and control them, but when it surpasses those, I’m left with no other option but the medications.
    This is a hard fight, so be gentle and forgiving with yourself. Resign to the fact that you have to do things a little differently now, but that’s alright. Life goes on and you can still maintain a good life with a little effort and it’s worth it!

  • Douglas
    3 years ago

    I went from having symptoms that I didn’t even recognize as a migraine (sudden weakness or dizziness that passed quickly, flashing lights, buzzing in the ear), nothing ever bad enough to warrant a second thought. Then I turned 40 and my warranty expired (the first year out of warranty was exclusively cardiac in nature).

    Then I had a stroke at 41, followed by hundreds of small TIAs, and about a dozen or so ones bad enough to send me to the hospital. The neurologists were having a difficult time deciding whether or not my symptoms qualified me to have a PFO closure device. The source of the confusion was knowing that some of the episodes (small and large) were different in nature. The symptoms were basically the same, but the onset and order of appearance could be different.

    My neurosurgeon bypassed the neurologist I had been seeing and spoke directly to my cardiologist (whose hands were tied until a neurologist provided a finding that I was having TIAs resulting from micro-embolisms resulting from the PFO).

    Following the closure I was TIA free, until it seemed that I wasn’t. Stroke-like symptoms re-appeared, resulting in more hospital time. After about a year, I was directed to my current neurologist (a migraine specialist). With my complete medical history provided before my first visit, she was able to provide a diagnoses on my first visit. Familial hemiplegic migraine.

    Since then I have discovered that if you have a TIA and a migraine simultaneously, the migraine can incorporate the new symptoms into its aura. Yes I ascribe semi-living characteristics my migraine (it helps me to cope).

    So, you are not alone in this. Strokes and severe TIAs can alter your migraine (multiple neurologists have told me it is very common).

  • Jenn Lebowitz
    3 years ago

    Hi M. C. Jilly –

    Thank you so much for sharing your story with us! We are definitely curious to hear personal feedback from the community in regards to the questions you’ve asked. I’m sure you’re not alone in your experiences, and we commend you for reaching out here.

    We’re so glad you and your MD are working together on this – and that you feel like you are both on the same page now. It sounds like you’re extremely proactive and strong to go through this process the way you are.

    Please do come by any time you’d like to share how you’re doing, or would like some information or support! We are thinking of you!

    Best,
    Jenn (Community Manager, Migraine.com)

  • Ann
    3 years ago

    I suffered from hormonal migraines prior to menopause. They were aura free and besides the pain, I suffered from abdominal problems which I later learned were abdominal migraines. They occurred once a month for a day or two. I took Anacin and was able to work and participate in life. After menopause, my migraines left for 10 years. I was then diagnosed with Hashimoto’s thyroiditis at that time and began my long battle with atypical migraines. I have little pain but suffer from ocular and abdominal migraines. I’m dizzy and spacey during this time and this occurs at least 7 to 10 times a month. During this past summer, I was having these episodes more than half the month. They last about 3 days usually. I sought help from an integrative medical doctor who is slowly changing my thyroid meds to include a natural thyroid med used for 100 years called Armor. Right now I’m on half armor and half Levoxyl. Migraines are a comorbidity for Hashimotos. My atypical symptoms have lessened but I’m not out of the woods yet but at least the episodes are lighter especially the abdominal ones (and my flashing lights in my eye is now only a twitch)and shorter and I’m hoping as my meds are slowly changed more of my atypical migraines will too.

  • Lisa Robin Benson moderator
    3 years ago

    Hi M.C. Jilly,
    Thanks so much for sharing your story. I am sorry to hear about your stroke and of the changes it has caused to your migraines.

    First, coincidentally, another member also recently posted about her migraines changing after a stroke. Might be worth a read: https://migraine.com/stories/getting-tired-of-no-head-pain-relief/

    Also, it is worth mentioning that “atypical migraine” is actually not an official diagnosis. Some doctors do use the term, but from what I’ve seen it can mean many different things. Migraines with stroke-like symptoms may be what is called hemiplegic migraine: https://migraine.com/migraine-types/hemiplegic-migraine/
    It’s important to know that you are receiving the correct diagnosis. The best doctor for that is a headache specialist. Here is an article that goes into that a bit more: https://migraine.com/blog/making-decision-see-headache-specialist/

    It is very smart that you get yourself to the ER. Has your doctor gone over what to look for in the difference between your migraines and stroke? Here is an article that talks about what is a migraine emergency: https://migraine.com/blog/what-is-emergency/ It doesn’t cover stroke specifically though so it is always good to be on the safe side.

    It’s really good that you are working together with your GP, and I think it is smart to focus on your most troublesome symptoms when keeping your diary. I have found personally, when I am rating my own migraines, if I try to get into too much detail it can feel overwhelming and then I won’t track my migraines.

    I hope all this information is a helpful start to you, and please don’t hesitate to reach out with any more questions.
    Be well,
    Lisa

  • jpg833
    3 years ago

    Hi, You should talk to your doctor about CADASIL (cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy). It is a condition which effects small blood vessels in the brain and to some degree throughout the body. It is quite a varied disease, but being genetic (autosomaly dominant) you would expect to see other people in your family suffering from the same phenotype. Tests that are of use are: MRI, where one expects to see punctate white matter hyperintensities; skin or tissue biopsy showing changes to peripheral blood vessels; definitive diagnosis by genetic testing. Also migraines seen in this condition will commonly change in character after the first TIA/stroke. Cognitive decline is seen in the late stages. A peripheral symptom is Raynaud’s phenomenon which is where extremities suffer from inadequite blood supply. The first TIA would normally be between 30 and 50 but it’s worth an MRI at least if you haven’t alteady had one and you have a family history.
    All the best.

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