Hi, i’ve been diagnosed with vestibular migraine. I originally Went to the doctor for complains of chronic dizziness but then suddenly t manifested into migraines.
I’m still confused about my diagnosis.
I get very dizzy get 30+ days of migraines and faint frequently. I’ve passed out 20+ times since last August. Do other people with MAV also pass out ? I get extreme weakness and once I recover from passing out I have symptoms of a brain stem migraine. My throat muscles become so weak I can’t talk, drink. My body stays very weak too. Sometimes it takes a few hours for me to recover.
Thank you 
We’re not really qualified to diagnose but I don’t believe passing out is a common MAV symptom (but defer to members to offer their opinions on that)
I personally believe you should get another opinion.
You could have an issue with CSF pressure? I know someone who had brain surgery and due to the disturbance to CSF pressure he got positional vertigo and dizziness. Just to illustrate that in that case the dizziness was secondary to a known primary issue. It’s far too easy to put someone in the MAV bucket (and also worth recognising we don’t know the underlying aetiology of MAV)
Be your own advocate and don’t give up until you have satisfactory answers!
Good luck and let us know how you get on!
Take a look at:
https://www.dizziness-and-balance.com/disorders/medical/orthostatic.html
https://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/complexities-of-low-csf-volume-headache
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I briefly looked at the articles.
The first one seems to be fainting/dizziness when standing; I can faint even while sitting.
I’m going to a vertigo therapy and have noticed my blood pressure is slightly low when I feel dizzy and sometimes; after my PT helps me do certain stretches I feel less dizzy and my blood pressure gets higher.
I’ve already gotten these labs:
EKG (heart test)
MRI (brain scan)
A bunch of blood tests
And on my initial diagnosis (may 2017) my blood pressure was taken lying down then standing up. Although I’m much worse now with the dizziness in general.
I also heard that if your migraine is NOT a true migraine (brain tumor etc.) you won’t respond to Triptans. I have had some relief from triptans.
The doctors also believe part of it is anxiety from PTSD. Although I can have symptoms with and without feeling emotional.
Thanks for the input.
Yeah make sure blood pressure is normal. All the best!!!
9 posts were merged into an existing topic: Neck pain that started with relapse
I’ve had this for 12 years and don’t think passing out is a normal symptom. I’d see another doctor for a second opinion.
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I agree with Margaret. One caveat, when this all started in my 20s I passed out several times. Later, in my 30s I had a grand mal seizure that left some brain damage behind (I lost two months of memories and have permanent aphasia). I have metabolic issues and high blood pressure. At the time, I assumed it was a blood sugar issue. Maybe. Now I know if I keep my blood pressure and glucose under control, I can drastically improve MAV and haven’t fainted in years even with MAV dizziness. For me that means regular exercise, maintaining ketosis and meds. See a doctor.
I am seeing a neurologist at UCSF who is convinced of my diagnosis. I guess I can get a second opinion. At first they thought it could be diabetes/blood sugar but I’ve got it tested to be normal. I’ve got the finger prick test done.
Thank you
Migraineurs are hypersensitive. I can feel hypoglycemia and hyperglycemia, both while testing within ‘normal’ ranges.
If they’ve only done a finger prick for diabetes, you could ask if they can do the A1C blood test. It measures an average reading of your blood sugar over the previous three months.
Do you know if the A1C test is included in the blood tests I previously got done?
I got a complete blood count including platelet count and basic metabolic panel. (Namely the hemoglobin) or is the A1C a seperate test?
I also had a few other blood tests to rule out thyroid problems/deficiencies.
I guess I could ask my doctor instead of y’all by the office is so hard to get a hold of.
No, A1C is not one of the tests that are included in the standard batch, like hemoglobin, white blood cells, red blood cells, etc.
I’ve have had 4 opinions (5 if you count a registrar) and it’s quite eye opening how they differ … oh and one or two were all so convinced! But they can’t all be right.
What this allows you to do is to see the potential complexity of the issue and to consider the different options.
One thing I’ve noticed is that you will get a domain bias … I suggest if you see a neurologist you are more likely to get a diagnosis/explanation from within their domain of expertise … it’s almost like going to a dentist and getting your dizziness explained by TMJ (!) (except this extreme example is verging on quack medicine imho, but does, unfortunately happen)
The crux is there are many systems in the body that have to be working correctly for you to feel ‘in balance’, and any one of these things might throw it out.
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Hey, I got the A1C test and it came out normal. Doctors are convinced my vertigo is neurological.
Going to the doc’s was so stressful. They confused me into agreeing to have a medical student be part of my consultation which made it take so long and by the time the medical student went to talk with the doctor about me and come back it was like an hour and ended up passing out into the hospital examination.
Granted I was sitting for a while and usually do leg pumps to get my blood flowing before I get up too fast. But they did also check my BP afterwards which came out normal.
I hate this!!!
Did they at least seem concerned you passed out while there?!
I only blacked out for some seconds. I passed out into the hospital bed face down. Didn’t hit the floor/ injure myself. After I woke up they helped me get up and lie in the bed to recover. Checked blood pressure for protocol. Not really concerned. I’m mean they said sorry. And no explanations as to why except it’s “neurological”.
That … that just leaves me speechless. That’s unacceptable.
@Manatee suggested I get it for the dizziness/passing out. Its a finger prick test which measures an average reading of blood sugar for the last 3 months. It’s done for hyperglycemia/hypoglycemia I think. Diabetics and such can have the same side effects I have.