I just found this forum and have been reading all your stories so I thought Id share mine. I am a 30 year old healthy woman. I used to be a gym-goer. In fact this whole thing started at the gym. I went to the gym on an early friday morning, March 3rd 2023 9:30 am to be exact. So Iāve been suffering for almost 3 months now. I felt kind of funny like a bit fatigued but it was nothing serious so I decided to workout anyway and i had eaten breakfast. and in the middle of my deadbug exercise I fell onto the mat and could not get back up as the room started spinning so violently. I felt as if I was going to loose consiousness if I sat upright. They called the ambulance and the paramedic checked blood pressue which was fine and bloodsugar also normal and decided to pull me up aggressively to a sitting position and I felt fluttering ping pong sensation in the top of my head. I went to the local doctor that day and they told me it was just exhaustion. The next day I went to an ENT and discovered that I had BPPV and they performed an Epley maneuver and the spinning was cured, but I was left with myriad of other strange symptoms that have not gone away. I sway when I walk and the room rotates from side to side. I felt like i was walking on a boat and now it turns into trampoline walking. when Iād lay down id feel as if Iām swinging. Im very sensitive to motion people or objects moving in front of me. Iām sensitive to sound. Loud noises make me dizzy. Also I cannot carry anything with any bit of weight like my phone is chunky I think I have to change that and carrying a bottle of water makes me dizzy. I was on Betaserc for 1 month but it didnt do me any good.I went to see so many doctors the first said BPPV (which they cured), then the second said vestibular neuritus. I went to see a physical therapist he said I have occipital neuralgia and I did a couple of sessions for that. My neck and shoulder muscles are stiff as I was advised not to move my face in any direction after the Epley. I recently went to see a neurologist and heās perscribed magnesium glycinate, but the brand i was given (magnetrex) has citrus sinesis in it and Iām worried about that because I know citrus fruits can be a trigger for VM.I asked him to change it he said this is the best one. I feel like thereā not been a doctor that knows how to treat this condition and Iām so worried that this will be my life from now on. Iām trying to do my best to stay positive., but I dont think this is a kind of illness you sit back and hope it goes away on its on so Iām trying be proactive about finding treatment. Iām desperate for any advice you could give.
Iām so sorry you are feeling so ill. If you read threads on this site you should find some that resonate with you and your symptoms. Have a look at the āSuccess Storiesā thread where people have posted about how they have improved and what helped.
You need to find and be treated by a physician that has experience in dealing with dizzy patients, either VM or otherwise. Vestibular migraine is not the only cause of chronic dizziness and other things need to be excluded before that diagnosis can be made
Working on that sheepdog waiting on my appointment will let you know on any updates. Positive and confident we can beat this if we stay positive and never loose hope.
Has the doctor who cured your BPPV talked about there being residual affects from it or needing to do the Epley again? The noticeable difference in sensation from changing āpositionā would be something I would explore. When I was first being seen at Duke by their Vestibular PT in the ENT clinic, he performed the Epley one time each over several sessions. I believe recalling that it is not out of the question or poor practice for it to be performed again to 100% correct BPPV. Also, recall that sometimes, for some, not all the crystals return leaving residual vertigo. Something to look intoā¦
So sorry this has happened to you. Youāve come to the right place. I recently discovered a magnesium spray that I use of my neck and shoulders and it has been an absolute miracle for me it tones down lots of my symptoms.
I have had my migraine associated vestibular disorder since I was 19 Iām now 36, you learn to live with it unfortunately but you never stop looking for things to help. The dizzy cook on Instagram has great advice on food.
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Hello Ive recently seen two neurologists and both confirm vestibular migraine one perscribed only magnesium 2 hours before bedtime the one Im taking now is magnetrex and the other neurologist added AMI 20mg I break the pill in half so Im on a 10mg an hour before bedtime . and I am suppose to add cymbalta in 3 weeks Hoping it will work. I also saw a dizziness specialist and she had no idea what was wrong with me she prescribed muscle relaxants, which is fine and a neck collar. I wore it last night for 2 hours and noticed my right foot was tingling and numb. and later on in the middle of the night I woke up with severe tingling and numbness in my arms it. I was so scary. My arms still feel numb. So I strongly advise against a neck collar
Hello Joanna, Yes I hear magnesium is the best for VM. Iāve seen that oil around but never thought to try it I will be ordering it today. hope it helps me. Iām really struggling with the food adjustments as I dont know what to eat most of the time I feel like all the foods I normally eat are taken off the list. I hope you find a cure and a regimen that works for youā¦ have you tried any of the pills the others have taken like Nori or Ami? Wishing you a speedy recovery
Hello @DizzyN , sorry that you are suffering and generally struggling with symptoms. Your description of strange fluttering in your head sounded familiar. My MAV was exacerbated by a strenuous Power Hoop session at the gym and was the last straw for my overloaded head. I found a neuro-otologist , Dr Surenthiran, who explained that my head was like a jug of water which was overflowing and which couldnāt take any more water! I was prescribed Pizotifen and also put on an elimination diet - the 6 Cs, which will be searchable on this forum. I couldnāt work for 5 months, but eventually everything improved and I gradually felt better. Today, 5 years on, I am about 85 - 90% better than I was, apart from being left with tinnitus and occasional ear and head pressure. If you can, find a neuro-otologist for another opinion as they are more specialist in MAV than general neurologists. I hope things get better for you soon - getting the right treatment is key and , if you can, finding out what your triggers are. I think stress played a part for me and the power hoop was the last straw!
Spray it on after a hot shower. I swear by it now!
My advice would be to try and figure out what food triggers you. For example, if I eat too much sugar in the evening I can guarantee my symptoms are worse the next day.
I take nortriptyline daily and came off topirimate when I found out I had a surprise pregnancy she is 6 months now and am still breastfeeding so still canāt take but the magnesium is helping me enormously.
I have used Carol Foster MDās rendition of the Epply maneuver on youtube which I find easy to do and helpful. You can do it when you feel the vertigo coming on.
How are you symptoms now with nortriptyline? did you tolerate topirimate? Iām at a decent baseline but having a hard time getting to 100%. I am only on supplements, veramipil, and Qulipta.
Topirimate took a long time for me to tolerate and gives me terrible heartburn so Iām not particularly missing it now Iāve introduced magnesium.
Iām probably 85% better with taking both Iāve accepted I will never feel ānormal.ā Donāt feel I can ever stop taking nortriptyline.
Hello Jan B I do not know of any Neuro-otologists in my area sadly. However, I would love an appointment with Dr. Surenthiran. Iāve heard phenomenal things about him. Do you by any chance have his contact details. Iād appreciate it greatly.
Donāt loose hope Joanna you will get back to normal you need to believe yoou can. You just havenāt found the right supplement/drug for you. I bought the spray you recommened took a shower and sprayd it on how fast til I feel the effect?
Iāve had it 17 years and my consultant thinks Iāve had it since I was a young child so Iāve learnt to live with it.
I feel the effects after 20 mins make sure you massage it in!
Hi - I have the contact number for his private practice in London, but it is from 2018: 0845 129 0003 . Fingers crossed he is still there. At the time his secretaryās name was Lauren. The email address was clinics2@gmx.com . At the time the fees were Ā£300 for an initial consultation and Ā£160 for a follow up. I felt that it was money well spent! Good luck.
