Conquering Embarrassment is a Continual Process

Conquering Embarrassment is a Continual Process

The room dips right, and I stumble, grabbing the back of the white chair in front of me for balance. Immediately, I glance around to see if anyone noticed me fall from simply standing still. Though I’m in a room full of people with chronic conditions, I’m embarrassed.

Fearing the perception

Dizziness is my most humiliating migraine symptom. I’m constantly tripping, and I can rarely turn a corner or walk down a long hallway without banging my right shoulder on the wall, a doorframe, or some permanent fixture—like the lockers I repeatedly banged into in high school. Unless I’m crouched low in a yoga pose, jumping up into a roundhouse kick, or dancing (all of which, for some reason, restore my sense of balance), I pretty much look like someone desperately trying to hide the fact she’s drunk. Which is exactly what scares me.


It’s hard enough to fight the stigma of migraine disease without compounding the fight with the stigma of addiction or alcoholism. I am not an addict, but I do occasionally take the types of medicines people often associate with addiction—narcotics and benzodiazepines. That alone makes me worry I’ll be perceived as weak or self-indulgent, especially considering there is stigma associated with these drugs even inside the migraine community. Add stumbling around to the mix, and I simply want to hide.

Constant struggle

Frustratingly, there is little anyone can do about migraine associated vertigo. Apart from treating and then ruling out Meniere’s disease, no one has ever been able to offer me a course of treatment for this particular symptom. Even when I’m on a preventative that appears to be reducing the severity and frequency of the head pain that comes along with my migraine attacks, the dizziness remains.

It is this symptom above almost any other—except, perhaps, the Alice in Wonderland syndrome I still experience on occasion—that I also find most disabling. It is the vertigo that makes driving difficult, if not impossible. It is the vertigo that is hardest to hide from strangers and acquaintances. It is the vertigo that makes me appear unstable and irresponsible to others. Or, at least, that’s what I fear, which is why I recently found myself quietly holding tightly to the back of a white chair, red-faced and nervous, while surrounded by a group of empathetic patient advocates, many of whom live every day with the same condition I do.

Grateful for those who understand

That’s the thing about chronic diseases—they can be alienating. This is true even when we are in the midst of people with whom we should feel safe. Some symptom, whether it’s vertigo or something altogether different, makes us believe we’re being watched and judged and found faulty.

Thankfully, we have communities like this one to dispel those fears and remind us we are not alone. I am so grateful for that and for each and every one of you. Just as I am beyond grateful for the advocates in that room, whom I know—regardless of my embarrassment—would have embraced me completely, even had I let go of that chair and fallen flat on my face.

Maybe next time, I’ll remember that.

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

View Comments (29)
  • sandhill
    2 years ago

    Hi. I’m a first-time poster and am looking for new treatment ideas. Dizziness is my primary migraine symptom, with intermittent and often unexpected bouts of vertigo. I feel dizzy pretty much constantly, but the vertigo, and the FEAR of having vertigo, is the most limiting part of having this syndrome. I never get crushing headaches, although I often have background headaches, which sometimes rise to the level of causing nausea. And stormy weather is probably my biggest trigger. My most recent neurologist has said there’s nothing more he can do for me, which I take to mean that he doesn’t want to spend the time trying creative options. I’ve tried nortriptyline, verapamil, topamax, depakote, and zonisamide. Most of these I had to stop due to side-effects, so I have no idea whether they would have helped with the dizziness and vertigo. A combo of depakote and zonisamide has worked best, but those, too, have some troublesome side-effects. I know there are lots of other meds out there – has anyone had success with any others? Thanks so much.

  • sandhill
    2 years ago

    Hi, Sarah –
    I’ve been to several ENTs, and no evidence of inner-ear problems was found. I even went to the Mayo Clinic and had a day of tests, but all the most obvious things were ruled out. It’s crazy how little agreement there seems to be among medical professionals about how to treat this. I was doing vestibular exercises for many months, until they started making things worse. And if this truly is a central nervous system malfunction, that makes sense. Anyhoo, I was very happy to find your account of vertigo and how horrible it can be – I feel your pain!

  • Sarah Hackley author
    2 years ago

    I’m sorry you’re struggling with this. Vertigo is my most frustrating symptom, and I haven’t found anything that works well to treat it, yet. Have you visited an ENT to rule out any inner-ear problems? That was the first thing my neuro suggested.

  • seagypsy
    2 years ago

    Sarah, with this last intractable migraine came some new and “exciting” additions. Vertigo and dizziness are two of them. I’ve never had vertigo before and I wouldn’t wish it on anyone. It has completely altered my life. I am no longer allowed to drive. I may actually lose my license. I cannot walk more than 4 or 5 feet without the room pitching and yawing. The bad part for me is, I don’t have it all the time. So, I never know where or when it’s going to happen.

    We were in Red Robin for lunch yesterday. I had just finished a visit to my PCP and it had gone well, and was actually feeling okay. I had had a really bad couple days previously; unexplained chest pains and an ED visit.

    I was able to eat a bit, but the chest pains started again, so we got ready to go. As soon as I stood up to walk towards the lobby, I felt all the blood rush out of my upper body, the floor sort of swooped out from under my feet and I grabbed a huge red chair in front of a least 20-25 people. I couldn’t catch my breath and all I wanted to do was vomit. I stood there until I could sort of feel my head and then grabbed the hub’s arm to walk a bit more.

    I sat down on a chair in the lobby and put my head down between my knees and had to spread out my legs because I couldn’t breathe. So ladylike. I must have sat there for 10 minutes. I looked and sounded like a freak. I had no appreciable blood flow to my hands and my feet and lower legs were beet red. I know people were staring, but not one of them offered to help or ask what was wrong.

    And the best part was, we got the “Have a nice day!” from the hostess as we left. Unbelievable!

  • Sarah Hackley author
    2 years ago

    I am so sorry to hear that, though I do know exactly how you feel. The uncertainty about when the vertigo will hit, and how hard, is difficult to manage. Hopefully, with more people learning about migraine this month they’ll learn some about vertigo as well. I wish you as many well days as you can get!

  • Glenda
    2 years ago

    While reading up on migraine vertigo and reading all of the comments, I realized that I may have something helpful to share. I have Hemiplegic Migraines and have a lot of vertigo with mine. My doctor calls them Vestibular Migraines. I ended up in the hospital a few years back and was also diagnosed with Type 2 Diabetes. I had become pretty much home bound by then so when they sent me home, they arranged home health care. My physical therapist didn’t know where to start so she rehabbed me as if I had a stroke. Along with exercises to build my strength, she worked on the vertigo. We did exercises like walking while turning your head side to side, up and down etc. It wasn’t easy and if I started into an episode she insisted that we stop. By the time we got done I could actually do figure 8’s around one way and then another without being triggered of having vertigo. I know now how to do this at home but don’t do it when alone for fear of falling. There were many more exercises involved and I started out doing them holding on to my kitchen counters. I still do when the vertigo is bad. Moving totally freely is also a great way to tame this down. Just dance or do what your body tells you to do. Again, never alone. I would highly recommend finding a PT that can help you with this. It is very hard work but so worth it. Hope this helps. Good luck to everyone.

  • Sarah Hackley author
    2 years ago

    Glenda,

    Thank you for sharing. I have heard of exercises and PT to help with vertigo. I’m glad you’re finding some relief with them. I notice mine calms down significantly when I’m doing certain high-exertion activities or exercises that require a lot of balance. The trick is figuring out how to do those without worsening my other symptoms! 😉

    Warm regards,

    Sarah

  • TriciaKm
    2 years ago

    Thank you all for the courage you have displayed in sharing your stories. I aspire to conquer my shame which over time have gotten me more closed off than ever. I used to consume a lot of alcohol just to leave the house and socialize so as to not ruin everyone else’s fun with my anxiety over if I may have a seizure-like syndrome or babble (baby-talk) and embarrass myself to just staying at home now that I am a mother and so try not to drink with meds.
    Employers are still not familiar with HM so I am viewed as dishonest from either those who heard of “Migraine” and tried to educate me that this was not migraine but rather something else when I shared my symptoms or for allowing me to contribute to their organization success only if I can perform in the same way just like the rest instead of concentrating on results more. Thus have had no employ for past eight months and feeling even lower (if there are any Work From Home jobs please let me know) so while I do not pretend to understand Migraneous Vertigo strikes or suggest that your Migraneous Vertigo strikes are remotely similar to Hemiplegic Migraine please share your coping techniques so I too can fight my fear of shame as this may be preventing me from selling my self to employers.

  • Sarah Hackley author
    2 years ago

    I’m sorry you’ve had to deal with unsupportive and uninformed people. Migraine disease presents very differently for some of us. If I couldn’t telecommute, there’s no way I’d be able to work. I hope you find something soon, and please feel free to reach out to the community here about how you feel and for support. Many of us have lost jobs, been unable to work, and/or felt like our self-esteem took a major hit from things we’ve given up or been forced to give up along the way. And remember: you are more than this disease and what you are able to contribue to an organization. I’m sure you have many incredible skills. Try to focus on what you do well. From your post, I’d say “empathy” ranks high. 🙂 Warm regards, Sarah

  • Glynne
    2 years ago

    Hello Sarah. I have answered you before – I’m the 82 year old who takes to her bed when Migraneous Vertigo strikes, but for the last 7 weeks I have been free of this, and have been on DOLOVENT which was suggested by the Neurologist my doctor referred me to after a year of taking Betahistine which the ENT Consultant suggested and which was no use at all. I had intended to wait untll 6 months clear before recommending DOLOVENT but thought you might like to try it. Quite pricey and not on prescription but if it works it is worth every penny. (I’m in the Uk – worth every Dollar to you!) I see from the Websites that it is available in USA.

  • Sarah Hackley author
    2 years ago

    It’s always nice to hear what’s working for others. I’m glad you have found something that is working for you. I hope your relief continues! Thank you for sharing with us.

  • TBI and still going
    2 years ago

    I suffer from chronic migraine and I have a balance disorder! I feel your pin every day! I usually fall to the right for some reason so I walk with a walking stick on my right side but on bad days I fall either way! Hang in there your not alone! I also have slurred speech occasionally! The first time it happened I had my daughter with me and immediately stopped talking to the woman who said she was cute. I checked out of the store went home turned on her shows and cried! I was sure that woman thought I was drunk and I felt terrible. That was 3 or 4 years ago and I have moved past it. Now I just call it my new normal! Good luck like my neurologist says there is no pill for dizziness so we just can do our best!

  • Sarah Hackley author
    2 years ago

    Looking at it with humor and acceptance makes a big difference. Thank you for sharing your perspective and your story!

  • Jani8
    2 years ago

    I guess I really didn’t know what vertigo was. I have the problem of tripping over a grain of sand or a painted line in a parking lot. I cannot walk a straight line down a hallway. I usually bounce from one side to the other depending on how long it is. I’ve always been this way. Now I also have an rare autoimmune disease that makes me walk kind of like a penguin and my knees can give out without warning, so I fall. I’ve gotten 2 black eyes from that along with many, many other bruises. So far I haven’t broken anything, but between the vertigo and the MG, I’m fun to watch! Whenever anyone else falls in a crazy way, they call it “doing” a Jan. It makes me laugh! Humor gets you through a lot in life.

  • Sarah Hackley author
    2 years ago

    That sounds severe. I’m sorry you’re having to deal with that, but I’m glad you can find humor in the situation. That’s so important to quality of life! I hope you find some form of relief soon.

    Warm regards,

    Sarah

  • Ann
    2 years ago

    I call it vestibular migraine whether the medical profession agrees with me or not, Vestibular, ocular and abdominal migraines have stalked me since being diagnosed with an autoimmune disorder 16 years ago. Prior to that I only suffered from hormonal migraines without all the trappings.

    I was called a drunk a few years back and it was very hurtful. I stopped going to the place the label was levied at me.

    I take motion sickness tablets purchased at the health food store. I know there are stronger motion sickness pills sold at drug stores but understand they cause drowsiness (not all of them) but drugs have side effects. I just learned a bunch of OTC drugs cause memory loss and I’ve taken a few of them such as Elavil and Zantac. Others are more serious causing liver and kidney damage. I digress. It’s just to live with migraine and try to get through a day taking the least dangerous remedy so one can function is one of the hardest choices for us. One of my latest remedies is to eat food that contains certain vitamins and nutrients such as 2 brazil nuts have a day’s worth of selenium, a cup of beet juice provides too many vitamins and nutrients to list here as well as a 1/2 cup of watermelon is loaded with necessary nutrients some of which I must have been missing as my migraines have been in the best place they’ve ever been since replacing drugs with food especially the watermelon (which was my first exchange). This is my latest attempt at beating the scourge of migraine–the drugs only worked for a while and maybe the food will too but at least it’s healthier so what do I have to lose and maybe the relief will be longer lasting…here’s hoping…good wishes to you all… .

  • Sarah Hackley author
    2 years ago

    Ann,

    Food choices can make a big difference for some of us. I’m glad you’re finding some relief. I hope it continues!

    Warm regards,

    Sarah

  • rlc25e
    2 years ago

    I’ve considered training my dog as a service dog for mobility stability. My best defense is a good sense of humor. My son will make a joke and say “oops sorry,mom, i left my invisible table out again.” and then he will ‘move’ this invisible table. Everyone chuckles and it eases the tension of walking like a drunk person in random objects and walls.

  • Sarah Hackley author
    2 years ago

    A sense of humor is so helpful! I’m glad your son helps you find laughter. 🙂

  • Sylvia Reed
    2 years ago

    Thank you for sharing your problems with vertigo. I occasionally have that happen and just stay home. Thank heavens I no longer work. What embarrasses me is my confusion and my mouth. I forget names, the wrong words come out, I can’t remember what I am looking for (very upsetting when I am shopping) and I cannot understand instructions even though I hear every word. As much as possible I avoid people unless they know me and the problems I have.

  • Sarah Hackley author
    2 years ago

    Sylvia,

    I also have trouble with language during my attacks. My kids and I joke around when I start messing up words, substituting incorrect ones for the things I mean. A sense of humor helps me. It is so, so frustrating when you can’t understand what others are saying though. I’m so sorry you’re having to deal with that. I hope you find relief soon.

    Warm regards,
    Sarah

  • Douglas
    2 years ago

    Sarah I understand completely! My vertigo was always one of the first symptoms to emerge, and the first one noticeable by others. My neurosurgeon has insisted on a cane to minimize the likelihood of a concussion. It has been one of the most frustrating symptoms despite being one of the mildest in absolute terms. Not being able to navigate the grocery store without using a motorized cart to avoid falling is one of the things that bothers me the most about the vertigo, silly I know.

  • Sarah Hackley author
    2 years ago

    Douglas,

    Thank you for commenting. I understand feeling self-conscious, but safety is important. I’m glad you’re following your doctor’s advice. Warm regards, Sarah

  • Luna
    2 years ago

    Sarah, would a cane help any with walking? I’m curious because I have these spells but they haven’t as of yet lasted very long. Hadn’t thought about it until reading your experience that maybe I should find a fancy cane to take with me especially when going to church and fellowship meal. That is where I am most effected. All that perfume and in too enclosed an area for too long (?). By the way, I’m too old to bother with being embarrassed by much anymore and I chose comfort over fashion years ago. Courage.

  • jrhodes
    2 years ago

    Perfume is a trigger for me, too. At church (and other places) I take a small air filter machine that filters out perfumes and plug it in. It blows fresh air on me! (I talked with my minister about this before I started.) I use it around town… at a small restaurant we frequent and the senior center, too. I couldn’t afford, health-wise to go out without it. Also, I have found a new product, a spray that destroys the perfume molecule. The name has “zero” in it, but I can’t recall the whole name; I have post concussion syndrome and it’s hard to find words a lot of the time. You just spray into the air and it destroys the perfume. There is no after- or cover-smell (there is a very tiny “tracking” smell so you can tell where it sprayed; it lasts a few seconds, but it is difficult to smell). I went to a friend’s house recently; she had used incense and it was intense. I sprayed one time and the incense was gone. All of it. It is a life-saver. I explain to people what I am doing so they don’t worry about what I am doing (I’m not entirely sure what I think they might worry about!). I spent my working years with migraines several times a week. Now I don’t work. I hope this info might help someone.

  • rlc25e
    2 years ago

    For the smell issue…church was always a trigger for me too. I read on here somewhere to rub Vicks on ur nose before u enter and it helps protect from those smells. It has helped me tremendously!

  • Sarah Hackley author
    2 years ago

    I have thought of a cane, actually. I’m quite certain it would help. However, I’m still much too vain, I think, to agree to use one. Apparently, I’d rather fall down. LOL. Still, I’m working on convincing myself to try one. For you, I say absolutely. Go all out! Find one that you find aesthecially pleasing, and use it any time you need. I may even be able to gain courage from yours. 🙂 Thank you!

  • kellyco5
    2 years ago

    Sarah- hang in there. I do wish, for you and others with vertigo, relief. It is truly awful to be off balance- vertigo was my first neurological issue before the migraines started six years ago. I want to thank you for your ebook – it has helped me tremendously to better cope with my new life.

  • Sarah Hackley author
    2 years ago

    Thank you so much for your kind words. I’m sorry that you also live with vertigo. Have you found anything that works for you for that symptom? It seems to be my most difficult to treat – at home by myself or pharmaceutically. Thankfully, I’ve built my life so it isn’t too much of an issue, since I rarely have to drive. Thank you also for telling me my book has helped you. I am so, so glad to hear that. 🙂 Warm regards, Sarah

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