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for the last two years have been: popping ears, nausea, vertigo at the beginning which seems to have gone away and been replaced by dizziness and light headedness, tingling all over head, severe headaches, weakness to almost numbness in my arms, and severe fatigue.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?
Interested in more discussions like this? Go to the Brain & Nervous System Support Group.
I know all too well what vestibular migraine is. Mine are directly related to rising and falling of barometric pressure. I found something that helps to eliminate half to 2/3 of these naturally.
Disclosure: I've had migraines most all my life and know mine have a heritable cause, they run in my family. I also know there are no cure-alls because migraines are a disease, and cannot be cured.
That said, I wear WeatherX earplugs that have tiny ceramic baffles in them, which help to equalize the barometric pressure when there are going to be dips, or a rise in pressure.
Weatherx.com has the information, and explains everything thoroughly.
Also, I have an app on my phone which will alert me to changes in pressure so I can insert them, to hopefully avert a migraine. It either reduces the feelings of a migraine or I don't get one!
Since I found these several months ago, I haven't had another vestibular migraine.
Whatever your doctors have prescribed for migraine disease, please follow their instructions. These weatherX earplugs may be helpful for you.
Perhaps your doctor
Would be interested in hearing about these earplugs?
My migraines came after a Concussion in the left prefrontal lobe. The headaches were very site specific occurring at the point of contact Left prefrontal lobe and where the brain probably sloshed back at the back left Cerebellum. I still have headaches today but have found some relief from 400mg Magnesium-L and 400 mg of Vitamin B2 Riboflavin daily. This was accompanied with Vestibular issues that kept me from walking without touching something (so I knew where I was in space) and from Driving. Vestibular Therapy has helped, me drive safely and walk more steadily. There are still good and bad days and I limit my activities on bad days. I then find some relief. In reading books where I can stare at the same small space while sitting. My doctor recommended the Vitamins as being very helpful for people who have migraines and I found them to be so and much better than taking aspirin or Tylenol.
wow @frobvt thank you! The weather fluctuations this winter in the Northeast have me in a continuous migraine status. I will ask my neurologist about the weatherx plugs. Do you have to be careful taking them out to avoid sudden pressure change?
No, you don't have to be careful taking them out. These specialized earplugs have a tiny ceramic baffle, or filter inside, which slowly lets the barometric pressure in, which will hopefully alleviate/temporarily eliminate migraines. Of course, migraines are a neurological disease and tend to run in families, and are not curable. There is an app at the Google Play store which goes with these earplugs. WeatherX. It will let you know an hour ahead of time when to expect the pressure changes. It's rather intuitive and has a graph, and it collects data from several days, so you can view the different trends. Truthfully, they have helped to either eliminate temporarily the migraines, or at least lessen the severity. I hope this helps you, good luck!
Hello out there…
These posts have helped me tremendously in knowing I am not alone. All my imaging (CT of inner ears), MRI, MRA, and MRI of neck came are negative. My neck has two areas of stenosis on the right side. I have been diagnosed by ENT as well as a neurologist at Dartmouth Hitchcock with vestibular migraines.
I went from being a very active, healthy, and happy woman to one who has become debilitated. I am 67, work part time in a women's imaging center at a local hospital. I love working on home projects, gardening, hiking, yoga. I have had years of vertigo spouts, however for 4 months I have been dizzy daily, equilibrium way off, and hard headaches when I wake up. I am trying to learn triggers, taking all the supplements mentioned above as well as an anti-depressant the doctor put me on. There are days I can't tie my shoes without spinning. I really love my job and would hate to leave it on this account.
Knowing you all understand this is comforting. I will take any advice anyone has.
Did folks find caffeine should be eliminated? Would you recommend vestibular PT for my balance? I know all our bodies are different and will react such to medicine. Was there a common favorite that seemed to help?
First of all, I'm very familiar with Dartmouth-Hitchcock, and I have seen them for different issues throughout the years. They are excellent and knowledgeable people!
Caffeine isn't the best thing, and I can't tolerate it myself, so I avoid it. Have you kept a food diary? Do you feel as though any foods might be triggering your vestibular migraines? Please ask your neurologist if she or she believes keeping a food diary would help.
I must eat gluten-free and dairy-free, and am allergic to artificial sweeteners. But barometric pressure is my worst enemy!
I'm not familiar with vestibular PT, but I do believe it would have its merits.
After I get a concussion a couple years ago, the vestibular migraine started and they were awful! No, I didn't take any medication for those. What I did do was discover the WeatherX earplugs, and
I accidentally hit the reply button and it got sent out without me finishing my reply, so I do apologize.
The WeatherX earplugs helped to lessen the severity of them; and now, I only get a bit of dizziness from time to time. (I still get one or two small migraines a week, and occasionally have gone a couple weeks or more without one). I'm a bit older than you, I'm 71 years old.
Basically, I ordered the ones that have the flat tabs, and I wear them to bed, almost every night.
Using those daily, in conjunction with the app that is free to download from the Play Store, helps me to keep track of the barometric pressure changes, and that's what works for me. That, and being strict with avoiding my known triggers. Staying well-hydrated with water too.
I have faith you will be able to work with your doctors, track what you are eating, and also the barometric pressure.
I'll be hoping and praying that you'll find some good solutions to help you live your life as you wish!
A migraine attack hit me out of the blue this year. I am 76 years old and never had a headache. They threw it into the diagnosis of complex migraine. no medicine for it. Just ibuprofen. I have an aura with it. My hands can get numb. I see the wavy lines ..I can’t speak. I’d like to at least know what kind it is.
@fluffy56 I get those ( and other types of migraines). Part of my visual field goes missing and then the electric wave patterns. I don't worry about them too much but if they are frequent- like once a week or more- there are medications that can help. Do you have a neurologist?
So grateful for your reply. Yes, I have been keeping a journal of food and drink intake and trying to eliminate one thing at a time. I have had no alcohol since January, no chocolate for a week, no caffeine for 5 days. I don't know how long these things typically take to get completely out of your system. I am on 7 days of the medication. I have not seen a tremendous difference. My neurologist wants me to go two weeks before we judge if it's working for me.
I had a concussion in November of 2022 and all this started in January. I am not sure it is related but I can't rule it out.
I wondered if there was a pill you could take on the onset. There are mornings I wake up clear headed, however by 11 am my ears are ringing, and the dizziness begins. I remain unbalanced for the rest of the day. On a good day with just slight symptoms, nighttime always brings on the symptoms. I find myself in bed by 8pm most of the time. I did PT , learned exercises to force myself to get dizzy, and did not see much of a difference.