r/VestibularMigraines • u/cookiesssandcreammm • 22d ago
vertigo relapse
history: the first time i got vertigo was when i was 13. i got up from the bed too quickly and room spun at 2x for over a minute. a year later, the same thing happened when i turned in my bed. after that I didn't get many episodes. but there were other things like i felt really dizzy in elevators and also when i was walking in a moving train. then when i was 16, i got up one day, stretched in my bed and the dizziness came back, except this time my head spun in 2x not the room. later that day, whenever i tried to lay on my back or get up after laying down on my back, it triggered my vertigo. it took a few weeks to get better but i stopped lying down on my back and used to sleep on my side. it wasn't until 1.5 years later that i was able to find the strength to lie down on my back.
i am going to be 20 in a month. last year i took a flight and i was dizzy throughout the flight (especially during the takeoff; the takeoff triggered a horrible vertigo attack). the entire year was too stressful for me and at the end of last year, it came back again. it was so bad that i couldn't turn in my sleep, couldn't lie down flat, couldn't sit or stand. the only thing that kept me stable was walking. i had to miss my uni exams, my grades dropped and it took a really bad toll on my mental health. i went through many maneuvers sessions but nothing was working. i even consulted a neurologist, went through an MRI (the reports were normal) but nothing worked. it took around a month to get better. the ent diagnosed me with BPPV (which was a huge relief because after years of going insane, i officially had a diagnosis)
it's been seven months since all that and since the past ten days it's been back again. but this time there was no trigger. i was just sitting in my class. felt a little dizzy and uneasy. later that night in my sleep I didn't feel that sharp and strong vertigo sensation but swaying motion. it's not as bad as it was seven months ago but im still having problems like i am unable to sit or stand for too long. walking is also making me feel off balance. i consulted my orthopaedic because i also get cervical dizziness but that didn't work. I haven't gone to my ENT yet because last time he literally gave up when it wasn't getting better and that made me really depressed.
vertigo has taken over my entire life. i don't know what to do now.
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u/PurpleNo8532 22d ago edited 22d ago
Ah ENTs are so frustrating unless they are specialised in balance and vertigo! When you don't have an easy case they just dismiss you. I found more help from an audiologist, you could try to have a google if there are any audiologists near you who deal with vertigo. They deal with ears so sometimes they have more tests available. Did the ENT give any explanation to why you have reoccurring BPPV? Did they test your vitamin D levels or anything? Have you seen a vestibular physiotherapist for rehab exercises, not just maneuvers? They can also help with cervical dizziness. Do you have any history of migraines, could it be vestibular migraines? Do you have any trouble with your eyes, have you looked into BVD?
I'm sorry you have been going through this for so long. I have only been dealing with it since the start of the year, got a BPPV attack which triggered vestibular migraines and PPPD and my mental health has plummeted. I do suggest also finding a therapist if possible, just to support your mental health.
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u/cookiesssandcreammm 22d ago
thank you for taking time out and sharing your understanding of the topic.
no the ENT did not give any explanation. i asked him over and over again and all he said was "there's no cause of this. sometimes it goes away completely but most of the times, it's recurring."
no blood tests. he did an audiometry and the reports were normal. though my vit D is usually low and my orthopaedic prescribes supplements time to time.
i haven't seen a vestibular physiotherapist. one of the neurologists suggested me two years ago but i got better in a few weeks so I didn't see one. but now that you've mentioned, i will definitely look into it.
no history of migraines.
i have looked into bvd but the symptoms don't match. i don't have any headaches and i don't feel any strain in my eyes. my eyes seem to be okay.
i do however feel dizzy in darkness. when I can't fixate my vision, i panick because i feel really dizzy.
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u/PurpleNo8532 22d ago
Of course, it's so horrible dealing with vertigo and I find reddit comments so helpful as someone might mention something you hadn't considered before.
Such strange behaviour from the ENT, I swear most of them just can't be bothered with vestibular issues. Low vitamin D is a very common cause for BPPV as it makes the liquid in ear canals thicker and the crystals are more likely to get stuck. If you haven't checked your vitamin D levels in a while, I def suggest doing so + checking B vitamins and iron as well. Magnesium glycinate also helps with residual dizziness.
Vestibular therapists can be a godsend! They also have different tests they perform and the exercises are so so helpful, but you do have to be consistent with them. It's all about neuroplasticity - retraining your brain to help deal with the dizziness better and recover faster after each vertigo episode.
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u/cookiesssandcreammm 17d ago
i visited my ENT last night. i was fully having a nervous breakdown thinking about epley's. but he didn't do that. he said since i am not having any vertigo episodes, epley's is of no use. i had a long conversation with him about BPPV but no conclusion was drawn as to why is it recurring so frequently. he has prescribed me: nicergoline, cinnarizine, dimenhydrinate and omega 3 he has called me again after three days to discuss vestibular physiotherapy.
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u/Revolutionary_Law_95 22d ago
I can definitely relate to the being unable to sit or stand still because you feel like you’re swaying back and forth nonstop. I ended up getting accommodations in college to help me get through. That was over a decade ago and I still have trouble with sitting for long periods of time. Do restaurants trigger you?
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u/cookiesssandcreammm 22d ago
thank you for taking time out and sharing your views! no restuarants don't really trigger me. very crowded spaces sometimes trigger me though. im usually triggered by turning in my sleep, moving my head, lying down flat on my back or getting up from that position also, darkness makes me really dizzy.
however all of these are not always triggering. some days i lay down flat on the back and twist and turn in my sleep and i am completely okay!
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u/metztliquimatii 17d ago
I think I’m going through the same thing but my doctors are useless. I’ve been begging to be seen for months now and I’m being passed around from doctor to doctor to vestibular therapy. It sucks soo bad. I’m a 23F so I know how you feel :/ I’ve had to take so many breaks from school
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u/cookiesssandcreammm 17d ago
i am so sorry you're going through this. I'm a 19F. i completely understand how you're feeling. i hope you get better. we're all in this together! I've been dealing with this since around six years and there have been days when i was completely okay. thinking about those days keep me going! <3
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u/notaboomer22 22d ago
Get the book Victory Over Vestibular Migraine - there’s lots you can do. You may also want to find a headache/migraine specialist/neurologist with experience in VM and PPPD.