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Vestibular migraine: What symptoms do you experience?
good day members,
Johns Hopkins diagnosed me with vestibular migraine a little over one year ago. Prior to that no one knew what I had and I saw ENTs, neurologists, and many other Dr.s. MRI of close to two years ago shows all is normal. However, despite a respite of feeling almost normal for three months while taking a new medication (Effexor extended release at 75mg.) all of my symptoms came back full force for what I call episodes, at least once a week, and lasting up to three 3 days in bed. My symptoms for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue. I can feel like a pressure in my head at times. I have not lost cognitive functions: that only occurred when I took Topiamate. My internist wants me to see a specialist at the Mayo Clinic, but I wonder if anyone else has experienced what my Hopkins Dr. calls very atypical VM symptoms?
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Hi I was sent to therapy for vertigo. They had me lay on one side, shook my head and sat me up. Almost fell off the bed. Next morning threw up 4 2 days straight and tinnitus started. This was after Labor Day. ENT doctor did MEI and found a meningioma. Not a good way to find our. I keep thinking if I did not go to therapy I would of been better off with the start of this terrible symptom of tinnitus. I don’t think she should of shook my head back forth trying to get the crystals back in the canals. I never and will not go back.
@nsainato Nadia, one other question. Have you had an injury to your neck like a whiplash even if it was years ago? That could be a reason for muscle spasms as it was in my case. I think from the way you describe this with either looking up or down causing the symptoms, your situation sounds very similar to mine in being a change in circulation. I'm glad you found an MFR therapist. They can work wonders! Let me know if that brings you relief. It can help so many things and get the body moving again as it should.
Good luck!
Jennifer
I have had these symptoms for years and cannot look up. My neurologist has a note in my record and gave me a paper note saying my neck cannot be extended and when I had surgery, the surgeon has to cope with that.
When I make a mistake, I massage Ben Gay or BioFreeze along the sides and back of neck. Not sure why that eases dizziness, but it helps a lot of the time. I used to take 1/2 Baclofen as well, a med that cuts communication between nervous system and muscles, but I don't tolerate it anymore.
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1 ReactionYes, I had a whiplash many years ago (car accident) I also had a fall from a horse. I have been fine since then. I appreciate you following up and helping me to try and put pieces together instead of going from one Dr to another with no relief. I will let you know after I see MFR therapist. Thank you.
Nadia
Hello all, posting from the UK here. To give some back story I have been experiencing noises in my right ear since April this year which carried on for a few months until I finally went to the Dr. I was misdiagnosed with eustachian tube dysfunction and given many different types of medication as I kept going back. Nothing worked and the symptoms escalated to pressure headaches, face popping and TMJ to name a few. November this year I was in my weekly yoga class and could feel a pressure headache coming on which isn't abnormal. But the pain I began to experience is like nothing I've ever felt before!! I couldn't feel my hands, I was talking complete nonsense, couldn't lift my head, the pain in my ears and head was like something trying to escape from my brain. I was vomiting, sweating and a lady in my class had to put my shoes on. I had lost all feeling! I was experiencing vertigo for the first time (I had experienced a weird feeling of disassociation before like I wasn't present in the room a few times in the past). I was taken to A&E where I was sadly turned away and told to take painkillers. I had never experienced anything like this in my life and thought I was having a stroke. The next few days were a total blur and I can't really recall being at work or any conversations I had. I made an appointment with a private ENT who diagnosed me with Vestibular Migraine. Since then I have had all the symptoms mentioned above as well as daily vertigo, blurred vision and troubled sleeping. I get "brain zaps" frequently also. I have been prescribed 25mg of Topiramate that I take at night which is not been great. I am having some cognitive issues such as forgetting words or not being able to finish a full sentence. I am hoping this is the medication! I am getting no relief from vertigo or the noise in my ear...now this isn't a tinitus noise. It's more when I speak there is a pressure build up which I can hear come to the surface. Does anyone else experience this?? Wishing you all a happy and healthy festive period
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1 ReactionI have as well 3yrs ago been diagnosed with Vestibular Migraine after 11/12 yrs trying to find an answer to what I was experiencing. It was a PT - physical therapist , with that specific training that diagnosed it…. Thankfully!!! I saw neurologists - told I was experiencing anxiety, ENT’s which discussed other things BPPV , on and on , as there are a variety of vestibular type issues that can surface. I knew I had found someone who knew what was going on when I filled out the initial questionnaire before her treatment. The questions really hit on what was going on with me!! I will say it was an ENT that did direct me to her. You should be looking in that direction for someone to help you. Do not just set up an appt with a PT and expect them to have any real knowledge or good knowledge in this area . And I will also say there are PT’s who have gone to conferences to learn about this and then think they understand and can provide good treatment . That is also not completely true, because I tried that as well before I found this person. You should look up a few of these things to get more information that will direct you better in your pursuit of understanding of where , how, and with whom to get better treatment. VEDA; info@vestibular.org,; and also go to YouTube to look up tons of information !!! For example put in vestibular migraine, vestibular migraine exercises, Dr. Shen Beh , an expert in the field and “Talk Dizzy to Me” -2 PT’s have conversations about vestibular issues, on and on … that should get you started. Saw someone that had a 6 minute video that discussed “Why vestibular treatment takes so long” a good quick overview of how treatment involves both
1- Adaptation
2- Habituation
Good Luck - I know how frustrating this all can be!!!
I too will just add that I believe the beginning of my issues stemmed from a motor vehicle incident where we spun around and around violently several times because of a hydroplaning situation. At the time I was happy to have survived!!!
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1 ReactionMy vestibular migraines only last a day or two, just like other types of migraines I have. There are other longer term vestibular issues that a PT can help with, and you can do exercises for, but I have never thought of them as "migraines." Another diagnosis that involves a brain source (like migraines) is "central vertigo," which is different from vertigo from ear crystals, inner ear, or neck. That is my understanding.
Jennifer, can you please tell me what is a "MFR therapist"? I have no idea what even MFR means.
I had a concussion in 2019 & a thunderclap headache in 2020 which opened up the very ugly can of migraines for me. I might now be going down the "vestibular" road with my migraines. As you know, this condition can certainly change into many "types".
Any information appreciated! Thank you kindly.
clappies1990 - it sounds like to me you had a "thunderclap headache" while in your yoga class. I had one working out at my gym and the ambulance took me to the Emergency Department.
It was the worst headache of my life, and I too thought I was having a stroke.
And I had a concussion 11 months prior which all opened up horrible migraines for me.
I also say the wrong words, have forgotten so many things and still do, And always feel brain fog and a dull, pressure pain in my head and that's not even the migraine kicking in yet. My mental status has completely changed since 2019 and it's looks like it's here to stay. I have heart disease so I can not take lots of migraine medication and what I do take barely works anyway. Topiramate made me completely paralyzed in that I couldn't even function. I had no idea what I was doing.
So you are not alone for sure. I am in your shoes as well.
Hang in and hold on. I know, easy to say, hard to do. I wish you the very best of luck!
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1 ReactionI can answer this question-
MFR is Myofascial Release. It is a slow hands in therapy that intends to impact on the facia that surrounds or covers your muscles. To give you an idea about what is fascia . You’ve all seen a whole chicken and know that there’s a little something between the muscle bellies of the meat that compartmentalizes them. It can just be there between sections or it can be tougher or tight in some places. Fascia holds the muscle bellies in place , similarly in us humans. . Fascia can tighten down or bind things down . This slow hands on treatment called MFR helps to soften the fascia so your muscles or whatever structures it’s impacting can be a bit freer. Allowing muscles to move more freely to their full range, etc.. Hope that helps!!