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Tell me does this sound like an MAV symptom?


#1

I was diagnosed with MAV 8-10 years ago after suffering from several severe vertigo attacks. i was doing much better (that is no vertigo) until earlier this year when I started with a brand new problem. I am now on my 3rd attack of a very strange cluster of symptoms that seem to have no name.

  • imbalance (no vertigo)
  • hyperacusis
  • head and neck ache ranging from barely there to bad; achy behind eyes
  • walking and talking at the same time gives me a very strange feeling,as does walking and eating crunchy food at the same time, difficult to explain, sorry!
  • touching certain areas on the left side of my face gives me a terrible painless zapping feeling, again difficult to explain. Right side is fine, no problems and it is only certain areas of the left side of my face and these feelings/sensations/areas are consistent with every episode. It is extremely uncomfortable.

I’ve seen several doctors and they shrug their shoulders and give me the vestibular migraine diagnosis. I had a dental implant about 9 months before this started and thought that might be it but dentist said no.

It’s the last symptom mentioned above that I am particularly concerned about as I have never seen this as a symptom of migraine and I personally don’t think it is migraine related. So I come to you as the MAV pros, has anyone ever experienced this strange feeling (of my last symptom mentioned above)? To me it sounds more nerve related, possibly trigeminal nerve, but it is painless and everything I read about problems with the trigeminal nerve says it is very painful.


#2

Trigeminal nerve involvement is common in migraine. Yes, sounds like MAV to me.


#3

Yeah, the zapping thing after touching your face sounds a bit like trigeminal neuralgia but that is typically very painful. Still, I wouldn’t completely rule it out. Even my headaches aren’t all that painful, just debilitating in terms of dizziness, confusion, irritable, anxious, hungover, sick…etc My Neurologist was confused initially when I said I was rarely in much pain. Pain science is really strange, if your brain has some good reason to not give you pain, it won’t. Probably my brain’s reason is that I’ve had them everyday for years…


#4

Come convince my brain not to do pain.


#5

Have you had an MRI just to rule out ominous stuff. Have a neurologist check the MRI. Zapping on left side is trigeminal neuralgia have had this multiple times. It feels like an electric shock wave.

Get a CT scan to rule out SCDS. Can you hear sounds like eye ball moving ?

What meds are you on ?


#6

yes, I had an MRI which was normal except for an incidental finding of chiai malformation which I’m told wouldn’t be causing my problems (I wouldn’t have known about this had I not read the MRI report).

I think possibly the trigeminal nerve also but it is completely painless, though very uncomfortable. An MRI wouldn’t have shown SCDS? Because of the hyperacusis I thought this might be the problem. I did have 2 ct scans 10 years ago when vertigo was a problem and they were normal. I don’t hear my eyeballs moving.

I’ve been on HCTZ for 10 years and a potassium supplement.

I don’t read anywhere of this problem and I can’t find anyone else who has it nor in all visits with Dr. Google have I seen anything about the painless electric jolt feelings, can’t even find a name for it.


#7

@jojo65 might just know bit more about that nerve. If she does I’m sure she’ll respond. Isn’t it frustrating when you go around and around and cannot get to sort things out. I’m never convinced when ‘experts’ say ‘that’s nothing to do with it’. As nobody really knows what’s causing it, how can they truthfully say that. I was told MAV’s often ‘Multifactorial’. Not that that helps necessarily. Helen


#8

Hello
I have suffered 5 years from left sideTrigeminal Neuralgia of the optical branch so the pain has a pathway of eye socket down my nose and into my cheek. I had an MRI but no blood vessel loop was detected or anything sinister. I tried Carbamezapine but it made me itchy so was placed on Gabapentin instead. I must say the pain is terrible when its triggered by cold weather and wind. My settled down with meds and i think the Botox injections has reduced it even further.


#9

Weird skin sensations can be migraine symptoms - read Oliver Sachs “migraine” for some of the whackier ones - I used to get sore hair!