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My Path to HM Diagnosis - Part 1

My Path to Hemiplegic Migraine Diagnosis – Part 1

Creepy, Tingly, Asleep feet

I’m scared on the inside, but on the outside, I smile so people don’t notice half of my body has gone limp and part of my face didn’t get the memo that it needs to keep functioning to appear like I’m fine.

My heart beats a million miles a minute and I start to feel my head get faint. I sit down as soon as I can because I know what’s coming on.

Numness spreading

The numbness spreads and now my foot, my hand, and my neck have gone tingly and uncomfortably numb and painful. I wait until the initial wave passes and wait for the next few symptoms to start. I know I have 5-10 minutes before it happens again, so I run to a safe place, preferably a bathroom, where I can have privacy and no one notices my stroke-like symptoms.

By the time the next wave happens, the whole left side of my body has gone numb and I cry into my sweater trying to muffle the sounds of me wailing in pain. This neuropathy-like symptom is just the beginning of a much bigger issue.

Uncharted territory

I was diagnosed with Hemiplegic Migraines 2 years ago officially. Of all the health tests, procedures, surgeries and possible diagnoses I’ve seen cross my chart, this was uncharted territory and reading up on it actually scared me. But finally having answers gave me so much hope that these would be controlled so much better with medication.

Hiding my symptoms

There came a point during my phase of undiagnosed that I was standing at my desk, facing my coworker’s desk and I became extremely faint, couldn’t talk and my whole left side dropped. To my amazement, I had done the impossible – I had hidden my symptoms from her at my worst. I felt… so conflicted. This was the worst episode I had had up until that day, but the most severe, the most painful and the most eye-opening one yet. I slowly gathered myself, was able to sit back in my seat and I prayed that my coworker wouldn’t look in my direction and see the left side of my body. This was the first time I found myself unable to talk, hardly able to move (partially paralyzed by fear) and completely and utterly embarrassed by something I would have NO idea how to explain if my boss or coworkers found out. I knew I needed help. And I knew they needed to know.

The next big step

I knew the next big step for me wasn’t finding the right treatment. I’ve been through the ringer, medically and likely knew what was in store for me; finding meds that didn’t work at all, finding meds with adverse reactions and finally, finding/settling for meds with the less of these two evils. The hardest part would be trying to explain what was going on to the people I love, who surround me on a daily basis and letting them know this is not “just” a migraine.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JennaJ
    1 year ago

    I had the same symptoms. I have only officially had one of these “subtypes”? Is it a type of migraine? I want to know more.
    I was diagnosed by the ER doctor, with a “complex” migraine, after running to the emergency room, believing I was having a stroke. My family doctor (who also suffers from migraine), said I had a “hemiplegic” migraine.
    What followed next was him saying, “If it happens again, you don’t have to go to the ER, it’s a migraine not a stroke.”
    But I said, “What if someday I really am having a stroke? I would need help as soon as possible before worse damage occurs from waiting and nothing is done.”
    I told yet a third doctor, my neurologist, what he said, and she said to most definitely go to the Emergency Room whenever you have symptoms of any kind resembling a stroke or heart attack. Better safe than sorry!

  • #purpleproject moderator author
    6 months ago

    It IS better to be safe than sorry. When I first started experiencing them, I thought “I’m way too young to be having a stroke”.. and they continued to get worse. I have gotten conflicting statements from different Neurologists.

    I’m glad you feel peace knowing what steps are right for you.

    Kelly, Team Member

  • nelag-g
    1 year ago

    I too have hemiplegic migraine with speech aphasia and convulsions. I try to tell all of my friends, doctors, etc. ahead of time so they won’t take me to the ER. I posted an article on this a few weeks ago. In the spring (right now for us in Alabama) I often have 3 to 4 episodes a week. I recently had attacks when I took my elderly mother to her podiatrist and my son to his orthodontist. Fortunately, both doctors knew exactly how to take care of me and their staff members were wonderful even though some of the staff were scared when my legs went out from under me. Bad part is that the doctors had to call my sons from work to come and drive me home. I’ll be glad when my 13-year-old can drive! This is unbelievably hard to deal with, but we just have to hang in there and really take each day as it comes and work to educate those around us. I find that the more people I talk with, the more tell me that they have a friend or relative with migraine and most are understanding. I agree with MllePHX that sumatriptan and opioids are the only effective meds when pain is really bad but I also use peppermint oil and lavender oil directly on my forehead and temples and the base of my skull when I have cluster headaches and find it very effective. Feverfew also helps and has been approved by my neurologist. Fortunately I work for someone who is a big proponent of essential oils as well as a registered nurse and she has been understanding. I also have a part-time job as an aqua instructor at a rehab facility and everyone there knows about my condition. You have to tell your boss and co-workers, I think, to avoid a possible catastrophe, especially if you have “drop” episodes or convulsions so they know how to care for you. Hang in there!

  • #purpleproject moderator author
    6 months ago

    This was a great comment & great discussion points! Thank you so much for sharing your story with us!
    Kelly, Team Member

  • DawnJ
    1 year ago

    I am the wife of man who suffers from Hemiplegic Migraine and after reading more and more articles we think he also has Migraine with brain stem aura. This article and comments are very familiar. If any one can comment on a new chronic symptom my husband has, please do. One day while still on work leave and trying to get diagnosed, his oxygen levels dropped to mid 80’s. He was hospitalized, and things resolved. But, he has had a constant migraine ever since then. No relief at all. No good days, just bad days and worse days. Any thoughts?

  • #purpleproject moderator author
    6 months ago

    Hi Dawn, I personally know a lot of people who carry smaller oxygen “boosters” to take when they start exhibiting symptoms. I would definitely inquire with your doctor’s office, but it’s not unheard of for oxygen levels to change!
    Kelly, Team Member

  • MllePHX
    1 year ago

    I too have hemiplegic migraines. I usually experience a weird visual and neurological aura a day before the pain & other neuro symptoms arrive -facial numbness, tingling, strange colors, etc. During the pain portion, my speech becomes slurred to the point I sound drunk. I forget basic things like names, errands, communications. Balance, coordination and vision are effected to the point I use the walls to keep me upright. Light and noise are painful… heck, everything’s painful for about 1-3 days depending on whether I have access to medication and whether it’s effective. I have discovered however that I can trick my brain into feeling the pain as pressure for very short periods of time through meditation. Sumatriptan injection and opioids are the only 2 meds that are effective. I’ve tried to work but am usually let go within a couple months due to missing work and/or poor work performance during episodes. And, yes, it’s extremely embarrassing and not a good idea to tell coworkers/boss unless one has been on the job successfully for 1+yrs. I know because I was fired while on short term disability leave with Mohawk corp. One never knows who will stab them in the back to get ahead. Yes, it’s important to protect one’s job but more important to ensure one is perceived as being an asset to the team/company. Becoming friends with HR manager is also a good idea. Good luck and may a miracle cure be just around the corner.

  • parmes
    1 year ago

    I hope I’m not being a bother. The way you describe your symptoms: them coming in waves, hiding the pain, all one-sided, face drooping… I’ve been trying to figure out how to describe this for a long time. When it happens it’s overwhelming and I can’t really even think beyond informing my husband “that weird stuff is happening again” but I’ve had so many tests done on me that I would think they’d be able to tell if I was having strokes.
    I haven’t been diagnosed with this type but the more I read about it the more I think I need to bring it up, point out some of my specific entries in my symptom tracker.
    Thank you.

  • JennaJ
    1 year ago

    I had the same feeling of trying to describe what is happening, and just being almost frozen. Almost like what’s called a partial temporal lobe seizure, but is it a migraine? I don’t even think doctors know enough about what we are experiencing and suffering with.

  • parmes
    1 year ago

    Yes! I’m getting that same feeling. I also have epilepsy and have ,in the past year or so, gone from fairly episodic migraines/controlled seizures to losing 2 jobs in 4 months because I’m now chronic/my seizures are uncontrolled.
    So naturally I had to find a way to fix it. Went to a neurologist for the first time since 2013, had a bunch of tests done, even had a seizure during an EEG! And the results were that they aren’t my usual epileptic seizures. They’re “non epileptic episodes” that are “caused by anxiety”.
    But now I’m wondering if maybe they’re actually linked to these migraines? I do generally have episodes when feeling all of this, and the head pain after is excruciating.

  • mrst53
    1 year ago

    I end up with a migraine headache after the stroke symptoms, unless I take my med. It is an older med that I have been on forever. I know these are scary, but hang in there, we are out here to help.

  • parmes
    1 year ago

    They feel so strange. Like you’re stuck there sometimes, sometimes not. At least for me. If I catch on that it’s happening fast enough, and I get myself sitting, it doesn’t seem to be as bad? Then all of the weird tingles/numbness can do it’s thing without you slipping. But yeah, I too always have a HUGE amount of pain on whatever side it started on that quickly spreads around my “crown” which makes me think it’s stress-related as well. Thank you so much for your response.

  • mrst53
    1 year ago

    I was lucky to be diagnosed in the 70’s that I had hemiplegic migraines. Before that, I thought I was going crazy and so the did most of the docs. I finally ended up with a great neuro doc, that specialized in migraines, because He HAD THEM. I went thru the usual tests and tried various meds, I don’t think they really know what causes them.Luckily they only happen once or twice a year. This year I had one on Christmas Day. Mine. I think happen mostly because of over whelming stress. I understand your fear. I often worry that

    i will have a stroke,these sure act like one.

  • Douglas
    1 year ago

    PurpleProject,

    I am so sorry for you. I have been (mostly) in you shoes. I have familial hemiplegic migraines, but I am very fortunate to not have pain with mine (so far, I share this with a handful of my extended family, while one aunt has pain with hers). Talking with you employer, friends, and family is vital to handling this condition without completely losing your mind.

    Teach those around you to help recognize the symptoms that are strictly migraine related, this is vital to ensuring that a stroke or TIA is not missed because you (plural) thought the episode was “just” another migraine. Do not hesitate to go to the ER if there is any doubt since it is quite possible to have both simultaneously (ask me how I know).

    Do get FMLA paperwork to your provider ASAP. Protecting your job is also important. Set expectations appropriately — especially with yourself, but also with your employer (and of course your friends and family as well). Do not be afraid to request accommodations to avoid triggers (e.g. lower lighting levels or alternatives to fluorescents).

    Most importantly, hang in there. You are not alone.

  • bluebird
    1 year ago

    My first differential diagnosis was brain stem migraine or basilar migraine or hemiplegic migraine. After years of many consults, & evals with highly respected docs, years of long trials of this and that…I have come to accept there is little to be done. My symptoms include episodes of dizziness, motor incoordination, r sided facial droop with increasing difficulty with word finding and formulating sentences, and a “shut down” that takes me to the floor.. It is impossible to cover up.I am most concerned when out in public or on public transport. I tell the stewardess on an airplane that if I am slurring speech I am not drunk, and most likely not having a stroke.I forget when I am having a good day (or few hours) how compromised I am. I feel entirely well for a time, I feel intelligence , compassion for others and impulse to be involved in my community in a positive way.I make commitments etc and then….I am not available to myself or to others. Very frustrating. Fortunately I don’t register all the changes as pain…altho BP goes up. I doubt CGRP will help. Acceptance and coping skills are the goals for this era of my life. I can’t work. But I can’t hide or life will become too small. I wish you well and encourage you to consider letting people know how you are, let them see your vulnerability, engage them in becoming a support for you. Let them be KIND !!! It would be a wonderful world if this strategy would work.!!!

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