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NEW - Question re MAV v PPPD Diagnosis


#1

Hello - I am getting different diagnosis from different doctors I am seeing. The audiologist thinks I have some nerve damage. The neurologist thinks MAV. The ENT thinks PPPD. It is very frustrating (although the treatment for them all will be similar). This group has a lot of collective knowledge. Based on your experiences, can you let me know what you think I have. My story/symptoms are as follows:

In August, 2018, I Got Vertigo with nystagmus 4 times over the course of about three weeks. There was some residual dizziness in between each episode that I was told would go away (I was told this was BPPV and the dizziness was normal). I then started getting constant ear fullness/popping and head tension that felt like little electric shocks in my forehead. Subsequent to that I got sound and light sensitivity, pulsatile tinnitus and the feeling like I was constantly swaying/rocking on a boat. I was prescribed Effexor (37.5 mg) about a month ago and some of the symptoms have calmed down. My current symptoms are as follows:

Sound sensitivity - especially higher pitched noise
Light sensitivity - sunlight and bright lightbulbs are the worst
Rocking/Swaying - only when I am standing up (no problem driving, sitting or laying down)
Head tension - as noted above, this feels light a electric shocks in my forehead as well as extreme tightness. I get this in the middle of the night sometimes which is really odd or just about any time I am stressed. And sometimes my head feels like a huge bowling ball.

I have an appointment this week with the neurologist so I would really appreciate your feedback. Thank you.


#2

True, treatment is very similar. You definitely check all the MAV boxes. I had a very similar set of symptoms before Effexor started to work it’s magic.


#3

Most of us on here are MAV so you’ll probably get more votes for MAV than PPPD. I would treat it like MAV for now until you have much less of the migraine symptoms. Then if the dizziness still remains, well maybe its PPPD instead.

I also get weird electrical shocks and stuff in the middle of the night sometimes. I have very similar symptoms, except without ear popping or pulsing tinnitus. Often feel like I have electrical current or steel wool in my forehead.

Have you tried a migraine diet such as the John’s Hopkins? Sometimes that works wonders for people and no side effects other than annoying people you eat with.


#4

Effexor is a good drug for both pppd and mav so you are covered. Sounds like MAV to me.

This is a good read to get you upto speed


#5

Welcome to the board Patrick and sorry you’ve been hit with this rubbish condition.

We can’t be diagnosing on here. But I will add I had a similar experience (4 doctors, 4 different diagnoses) which highlights a degree of subjectivity and controversy in this discipline.

It bothers me that PPPD and MAV have such a similar treatment protocol so to me that’s just different branding on the same tin.

Whilst this is far from perfect I’d try to focus on what makes you feel better as imho the discipline rarely has all the answers.

The MAV protocol is well trodden and effective for this family of conditions. The board members collectively have massive experience with it.

(PS I trust you’ve had the particularly nasty stuff ruled out (with MRI). That’s super rare but definitely something you’d want to confirm.)


#6

If you use the Search facility you’ll find several threads on PPPD. Everywhere I’ve read about it I’ve read PPPD is non-vertiginous and must be constant for at least three months, and follows a vestibular event. If that helps. Your symptoms sound MAV like to me but best wait see what your neurologist says. Helen


#7

This is extremely helpful. This may be a dumb question, but how do you identify triggers? My symptoms (imbalance, light sensitivity and sound sensitivity) all seem pretty constant.


#8

Coffee is a trigger for me. Once your med stops the chronic phase ,it becomes easier to identify
Dietary triggers.


#9

Its very hard to identify anything 100% because there are so many variables in daily life. And when you are really chronic 24/7 toggling between a 9 and 10 its really hard to tell if a coffee did anything to you. But if you do everything to reduce your triggers like diet, lifestyle and meds for 2+ months then you will get your baseline symptoms down to a 5. Then yeah, you will feel triggers occur between a 5 and 10. It’s basically like that, hope that helps. You sort of have to take a leap of faith with reducing triggers for a while even though you are all messed up and can’t feel much.


#10

Hi Patrick. It’s pretty difficult with 24/7 symptoms to identify triggers, and triggers really don’t help because they don’t play the game because they can be delayed and/or cumulative. In addition to being straightforward. Dietary triggers generally occur quite promptly. You do need to listen to your own body. We’re all different. I tend to have alot of delayed triggers, next day at least. Noise and light you might have some luck with, obviously triggers ramp up the symptoms still higher. I’ve always found with light sensitivity generally feel it quite quickly and directly. With light I’d be OK until I moved to a different room. Best practice although not a practical way to live, with light sensitivity to always be in consistent and equal light. So watch out for reactions as you move through different light zones. Sound I suspect is much the same in its own way. ‘Imbalance’ I’d say is the result, caused by the hypersensivity of the other senses so is the result of them being triggered. It certainly is easier with e;isodic MAV to identify triggers but trigger avoidance is a big part of the recovery strategy so it’s worth a goid try. Helen


#11

I am still a little confused as to the difference between a symptom and a trigger. For example, my eyes have become very sensitive to sunlight since this started. Is the sunlight triggering a migraine or is my sensitivity to sunlight a symptom of my migraine? If the latter, I would be hopeful that the sensitivity will go away once I find an effective medication. Ditto with my noise sensitivity. Any insight would be greatly appreciated.


#12

Sunlight = trigger

Pain = symptom


#13

A trigger is something that activates the migraine brain, I think. We have different thresholds of how much triggers we can tolerate before we trigger an attack. Have you read “heal your headache”? It is a good reading to educate yourself about migraine. When you are very symptomatic (light sensitivity), bright lights are a trigger. Once migraine is controlled, yes, your threshold increases. That is why you have to attack the migraine through several things (diet, sleep, avoiding environmental triggers -noise, lights, wind, etc-, stress reduction, exercise, meds). Hope this helps.


#14

A trigger causes the symptoms to occur. If you drink three strong coffees (trigger) and get a migraine/ much worse vertigo ((symptom). Light sensitivity (photophobia) is a bit different. It can be both. Certainly in my case, it is. Sunlight, or even contrasting lights simultaneously, or reflected light (from a puddle/ advertsing hording etc) or flashing hazard lights maybe Ambulance (or beware Christmas looms) can all be triggers that cause symptoms. However sensitivity to light regularly occurs during classic migraine attacks so that makes it a symptom too. MAV causes hypersensitivity through most of our senses, sight, sound, smell and even hypersensitivity to medication. As you say once the preventatives control the migraine, they should reduce/stop the symptoms and increase your tolerance levels to the triggers which cause the symptoms in the first place. That’s the theory. Helen


#15

:dizzy_face:

you won’t drink three strong coffees again for a while, that’s for sure!


#16

Got it. Thanks everyone. I appreciate it.