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Vestibular migraines while riding

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  • Vestibular migraines while riding

    Hi all,
    I have had some concerning symptoms while riding/working around the barn. I will preface this by saying that I have spinal stenosis and some disc/nerve problems in my back so I don't know if it's related to these other things that are happening.

    ​​​​​​When I squat down and go to stand up, I see all white, vertigo/dizzy, hear ringing or other weird noises and my limbs go numb. I have to grab something to steady myself and even walking feels unsteady. I feel like I'm going to faint. This lasts for maybe 30 seconds, but it's becoming worse each time and happening multiple times a day, even while riding or working out.

    I went to a neurologist who said I have vestibular migraines and she prescribed me topomax, but I haven't had much improvement with it and I feel strange on it. I feel worse after these episodes, very exhausted and can't put words together and spacey.

    Does anybody have symptoms like this? What do you do to manage them and has it gotten better with anything?

    Thanks in advance!

    ​​​

  • #2
    How is your blood pressure? How long have you been on the Topomax and did they titrate you up to a high enough dose slowly?? The side effects will get better but you have to stick with it and you have to start at a low dosage and work up....

    Migraine will cause different reactions and the after effects are awful! I don’t vomit (many do) but people if they don’t know , think I’m having a stroke...I can slur words, trip, space out....then BAM 12 to 24 hours of hell! I ho to bed, ice pack on my head and with a very very bad one to emergency.... they’re used to seeing them in Calgary so we aren’t “brushed off “! I’m just getting over a minor one today (minor because relpax worked) but now I have what I call the “hangover”.... it’s like having a hangover without any of the fun!!!!

    BP meds like proponol (so) can also be very beneficial for the correct type of migraine. Topomax is very effective at helping, as it’s an anti seizure med.... I couldn’t function without it (I used to get horrific auras now they’ve gone down to a more quick light headiness and I know to take a Realpax)...BUT it took a while to tolerate and I see my dr every 3 months to keep on top of my BP (it falls low fast) and to make sure I’m doing well on the Topomax !
    I have cancer but cancer doesnt have me!

    Comment


    • #3
      Does it only happen at the barn or all the time? I would wonder about some form of Dysautonomia (there are a lot of different types. Dysautonomia is essentially a dysfunction of the autonomic nervous system. I have Postural Orthostatic Tachycardia Syndrome (POTs) which is a form of Dysautonomia. I would be curious what your BP and HR are doing during the episodes. Did the doctor do more of a work up? Bloodwork? ECG? Etc?
      "No matter what anybody tells you, words and ideas can change the world."
      -Dead Poets Society

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      • #4
        I pass out with my migraines—diagnosed as vestibular migraines. It prevented me from riding for a while. I use Aimovig shots once a month and actually had a tongue-tie revision done that has mostly eliminated my passing out. My tongue-tie wasn’t severe, but my dentist/sister-in-law said it was affecting my breathing and my vagal reflex. She apparently was right since my migraines have significantly been reduced since my revision. It’s not a cure-all, but it worked for me...and I’ve had severe chronic migraines for so long (and so severe) that I had to get disability because I had 4+ incapacitating migraines a week. Good luck!

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        • Original Poster

          #5
          Hi Eclipse, I guess my blood pressure is fine because the regular doctor and neurologist didn't say anything about it and it's always been fine as far as I know. I've been on Topomax 6 months but it does make me feel very weird and also hasn't really worked. The neurologist has me sticking with the same dose. I've been considering getting a second opinion but we've moved since and switched health insurance so I guess I've been dragging my feet. I started having small, infrequent episodes about 3-4 years ago that I didn't think much of (figured I stood up too quickly), but now it's really messing with the enjoyment of my barn/riding time. I find it so strange that they're labeled migraines- my head and chest does get a pressure feeling like a hug but I guess but it just never registered to me as a migraine. I rarely had headaches growing up. I do recall getting 2 migraines as a teenager but just nothing like the symptoms of these. Thank you for your feedback- I am just learning about this so it's nice to hear that you are able to manage them somewhat. I thought I had the back pain under control so now I'm hoping that I can get this managed as well.



          Originally posted by eclipse View Post
          How is your blood pressure? How long have you been on the Topomax and did they titrate you up to a high enough dose slowly?? The side effects will get better but you have to stick with it and you have to start at a low dosage and work up....

          Migraine will cause different reactions and the after effects are awful! I don’t vomit (many do) but people if they don’t know , think I’m having a stroke...I can slur words, trip, space out....then BAM 12 to 24 hours of hell! I ho to bed, ice pack on my head and with a very very bad one to emergency.... they’re used to seeing them in Calgary so we aren’t “brushed off “! I’m just getting over a minor one today (minor because relpax worked) but now I have what I call the “hangover”.... it’s like having a hangover without any of the fun!!!!

          BP meds like proponol (so) can also be very beneficial for the correct type of migraine. Topomax is very effective at helping, as it’s an anti seizure med.... I couldn’t function without it (I used to get horrific auras now they’ve gone down to a more quick light headiness and I know to take a Realpax)...BUT it took a while to tolerate and I see my dr every 3 months to keep on top of my BP (it falls low fast) and to make sure I’m doing well on the Topomax !

          Comment

          • Original Poster

            #6
            Hi MustangSavvy It happens all the time but worse at the barn (I'm there 5-6 days a week). It happens right away when I get up in the morning, when I work out, if I squat/sit and then stand up, etc. I feel so weak and no balance after the vertigo passes. Thank you for your feedback. What are your symptoms like if you don't mind me asking? Previous to the neurologist, the doctor did blood work and a table test. They thought something was off on the table test but when doing the second time it was fine I guess, as well as the blood work. I haven't done an ECG.

            Originally posted by MustangSavvy View Post
            Does it only happen at the barn or all the time? I would wonder about some form of Dysautonomia (there are a lot of different types. Dysautonomia is essentially a dysfunction of the autonomic nervous system. I have Postural Orthostatic Tachycardia Syndrome (POTs) which is a form of Dysautonomia. I would be curious what your BP and HR are doing during the episodes. Did the doctor do more of a work up? Bloodwork? ECG? Etc?

            Comment

            • Original Poster

              #7
              Hi FaithfulCurly, this is so interesting to me. I'm glad you got some relief. Did you also have ear ringing/buzzing or vertigo before passing out?

              Originally posted by FaithfulCurly View Post
              I pass out with my migraines—diagnosed as vestibular migraines. It prevented me from riding for a while. I use Aimovig shots once a month and actually had a tongue-tie revision done that has mostly eliminated my passing out. My tongue-tie wasn’t severe, but my dentist/sister-in-law said it was affecting my breathing and my vagal reflex. She apparently was right since my migraines have significantly been reduced since my revision. It’s not a cure-all, but it worked for me...and I’ve had severe chronic migraines for so long (and so severe) that I had to get disability because I had 4+ incapacitating migraines a week. Good luck!

              Comment


              • #8
                I have/had debilitating vestibular migraines too, among other things....a combo of Inderal and Propanalol helped, but it's never gone away entirely.

                What helps me more has been changing my behavior, and practice. For example, I know I can't have my head below my heart (aka bend over), so I squat slowly instead, always being careful to rise slowly too. Which means, I ask some nice barn person to pick my horse's hooves....or I bend very carefully with a small squat, and do a quick job (knowing I will find someone later to do a better one). I also try to always have one hand on something while squatting and rising...for balance, but also for perspective since your body uses your sense of touch for balance as well.

                I also did some official physical therapy, but a mostly lot of practice at home... Could I squat but not bend? How far could I bend? Is there another way for me to do the same thing, that doesn't trigger the dizziness/faintness? Even if I found I just could not do a certain thing, knowing my limits and doing something (even if it's small) to manage my condition made me feel more in control. Once I found my limits, I gently tried to push them (some people go to the gym, I try to bend over...lol). And I've gotten better...not cured, but off those meds, and able to do horsey things.

                It's so good you are seeing a neurologist, though! They will be able to help you with the meds and testing...I just found they usually forgot to mention behavior changes as helpful.

                Good luck!

                Comment


                • #9
                  What is your BP seated and then immediately after standing? I had great blood pressure seated, never over 120/80 that would drop drastically, postural hypotension, and fainted more than once. There are methods to increase your BP as you prepare to stand to avoid the drop. Over the years I had learned to use my diaphragm in a form of valsalva maneuver to increase my blood pressure, and my PT recommended marches before I got up out of a chair.

                  I had some nasty migraines with vomiting and the "hangover" that were resolved nicely by topomax, it gave me back my freedom to be doing outdoor activities. Made Coke taste like death but I'd rather stop self medicating with massive doses of aspirin that don't really work.

                  Would you consider getting a second opinion?
                  Courageous Weenie Eventer Wannabe
                  Incredible Invisible

                  Comment


                  • #10
                    I second the second opinion! Many good thoughts sent your way from another migraineur!

                    (and I am totally there with those who experience the headache hangover. often my migraine returns for round two on the afternoon of the day after...and I generally feel out of sorts all that day, cranky and mentally full of dandelion fluff. arg!)

                    Comment


                    • #11
                      Also be carefof “rebound headache “....I’ve had them and it’s awful....it’s a vicious cycle.....wake up with migraines, take meds, it comes back but your not sure what to take so you take something like excedrine migraine and it goes away, good but it comes back, so you take again....it comes back....take again, goes away.....and the cycle starts.....blech.....I now avoid this stuff like the plague, yes prescription meds are expensive BUT if they don’t work it’s NOT migraine so now I’ve learnt that only time will take it away (OTC meds are just “masking” the headache). Then the inevitable “hmmmmmmm” so you “power through” and it finally goes away and you say “well I’m not going there again”! Easier said than do.....it’s one of the reasons I now keep am”headache diary” and attend a headache clinic (very popular in Calgary). It’s such an easy thing to fall into ......but I do absolutely advise a headache diary! Document everything. I have yearly CT scans and so far all clear ....now with breast cancer they watch for metastasis but my symptoms haven’t changed and my meds work as normal! These migraines can be so scary but now I’m so used to them, it’s any vastly different symptoms I have to watch for.....once you start documenting everything you may start noticing a pattern. Also, does your city post a “headache weather forecast “....those can be very telling! I will suffer when they also say sinus as well as migraine levels higher!
                      I have cancer but cancer doesnt have me!

                      Comment


                      • #12
                        If this is true vertigo that you are experiencing, I wonder if this is a Meniere's Disease type thing that you have going on? Since it seems to be positional-related vertigo coupled with tinnitus. This does not explain the numbness in your limbs - but that could be related to your spinal stenosis. Do you ever feel pressure in/around your ears when this happens? Has the ringing in the ears ever progressed to episodes of hearing loss?

                        Comment

                        • Original Poster

                          #13
                          Hi all- wow! I wasn't expecting so many great responses. Thank you so much! Up until recently I was doubting myself, thinking that I have just been overreacting or something. It's comforting to hear that I'm not the only one that experiences these or the after effects. I'm glad for the validating, yet also hoping we all get better too.

                          MaxineSteele: So much yes for the behavior modifications! I also learned to squat to pick feet/wrap legs/groom/etc. and slowly stand up or have something to hold on to. Recently I discovered that if I put my tongue on the roof of my mouth it seems to help once I do get up and am spinning/off balance. So weird that it helps but I'll take it. I also try not to do too much squatting and getting up because that seems to trigger, especially after riding/working out/etc. Thank you for the encouraging words and so glad yours are manageable!

                          ReSomething: My BP seems to be good and not do anything crazy from sitting to standing, but now that I think about it -other than the table test I did once, I never tested it further. I'm STILL laughing over your "made Coke taste like death" because I have lost a few pounds on the Topomax. I would totally get a second opinion and have been dragging my feet about it because we recently moved and switched health care providers. But it's definitely time as they're getting to be very frequent and more sensations.

                          RockyMouse: Thank you for the good thoughts, right back at you! It is interesting to hear that most suffer AFTER these episodes, because I am so unfocused, weak, and fatigued feeling afterward as well.

                          Eclipse: I really like your suggestion of a migraine diary! Great idea also about checking the weather for changes.

                          Mlkapral: Yes! I do feel feel lots of pressure around my ears just in general, and the ringing/buzzing/high pitched noises happen when these episodes happen. I also see all white, everything spins and I feel like I'm going to fall or pass out. I seem to have a range of sensations along with those such as the numbness, feeling pressure around my chest, and really off balance. The regular doctor also thought Meniere's, but the neurologist said vestibular migraines. Do you have experience with Meniere's or do you know what the difference is between that and vestibular migraines are or how they diagnose? I appreciate your insight!

                          Comment


                          • #14
                            Originally posted by willowkins View Post
                            Hi FaithfulCurly, this is so interesting to me. I'm glad you got some relief. Did you also have ear ringing/buzzing or vertigo before passing out?


                            Sorry, I just saw this.

                            I do do have some warning signs before I pass out. I experience vertigo pretty frequently—both with & without passing out. Some of my vertigo is like a ‘swirly’ feeling in my head. It’s not outright dizziness, but kind of like a tilt-a-whirl feeling in my head. My ears also ring almost constantly, but they get worse when I’m getting ready to pass out.

                            Recently I’ve been passing out again, but I think it’s at least partially due to having a serious cough/cold.

                            Comment


                            • #15
                              I don’t get migraines but after a very severe bout of vertigo recently, my neurologist sent me for PT with a therapist who specializes in vestibular PT. Maybe it’s worth checking out?

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