Had a really good visit with the neurologist eariler this week. The kid’s MRI was completely normal (thanks be to God). The propranolol seems to be working – not as fast as we’d like, and it’s probably contributing to the fatigue and muddleheadedness. She wants him to stay on it another week or two, and then switch to a lower dose.
She and the physical therapist both say that it looks like a lot of his remaining symptoms are driven as much by anxiety as by the MAV itself. That makes a lot of sense, since he has a primary anxiety disorder – anxiety is always an issue for him. And it can be debilitating.
I’ve noticed that many, many folks on this list take benzodiazepines of one sort or another. Is anxiety directly caused by MAV? Whatever is going on in the brain that’s causing the dizziness and such is also causing the feelings associated with anxiety? Or is it an emotional reaction to the symptoms? How do you deal with MAV-related anxiety? (Besides benzodiazepines, of course – since the kid can’t take them, we need other ideas!)
Hi MamaB,
After years of Mav and migraine symptoms, I do think anxiety can happen “form and morph”, it’s a given!
For myself , now even an “excited/joyous” moment can cause my brain to " overload!
Anxiety was one of my first obvious symptoms OF MAV, during a very stressfull time, the Mav /migraine/24-7 dizziness then followed.
I was only young,29 year’s old, when my first symptoms showed.
After a nasty event.
as youalready know , Teenage years are full of yucky hormanal issues and could trigger an allready ,Migraineous brain…an event!.
If the Prop is working it’s a pretty good sign.
Geesh! I’m glad, it’s me who has this and not my" Baby gir".
Breaks my heart to think about such a thing.
After going through this almost alone, I think of you and truly wish you well.
You have been so proactive about youre son and I can’t praise you enough for being such a trouper!
P:s I havent seen aura for a week, Thank god for" modern medications" and arobic exersize!
get’s us real sick people, through some crappy stuff.
I wish you and your family a very "normal"and HAPPY day tomorrow.
xoxoxoxoxoxox
Jen from OZ
Thanks, Scott, for that link! I also read the PDF that was linked to at the bottom of the article – at least, I tried to. I didn’t understand all the words in it (I should have gotten a degree in neurology instead of English!), but I think I got the gist of it.
It sounds like migraine, anxiety, and dizziness all use related pathways in the brain, so if you overstimulate one, it can “spill over” into another. Sort of like when you feel like you have a sneeze coming on, you can trigger the sneeze by looking at a really bright light, because the “sneeze center” bumps up against the visual processing parts of the brain. In a similar way, anxiety can trigger migraine and dizziness. Or dizziness can trigger migraine and anxiety. Or migraine can trigger dizziness and anxiety. It’s all mushed together in the brain.
Is that it?
Since the anxiety is “primary anxiety” – a glitch in the wiring, not a true emotional response to anything – it’s unlikely that things like cognitive behavior therapy would have much value in addressing it. You’d want to focus on things that directly affect the brain pathways – so, meds to turn down the volume, as it were. And avoiding things that turn up the volume on those pathways – whether that’s certain foods, or particular visual stimuli, or whatever.
Thanks so much for pointing me to the information, Scott. And, Jen, thank you for the encouragement!
Hey, maybe common pathways also means common access to *disruption *of nasty patterns.
Like surprising someone who’s suffering the hiccups (hiccoughs) and interrupting them. Sometime, I discovered to pleasant surprise, the same thing also works with people who are coughing.
It sounds like migraine, anxiety, and dizziness all use related pathways in the brain, so if you overstimulate one, it can “spill over” into another. Sort of like when you feel like you have a sneeze coming on, you can trigger the sneeze by looking at a really bright light, because the “sneeze center” bumps up against the visual processing parts of the brain. In a similar way, anxiety can trigger migraine and dizziness. Or dizziness can trigger migraine and anxiety. Or migraine can trigger dizziness and anxiety. It’s all mushed together in the brain.
Is that it?
— End quote
Yup, that’s a pretty good summary. Dizziness does definitely trigger migraine and has been shown in a recent study using a caloric test to bring on the dizziness. And we know that anxiety triggers migraine so it’s no surprise that migraine triggers anxiety. I think anxiety can show as a type of “aura” before the big event.
— Begin quote from “Mamabear”
Since the anxiety is “primary anxiety” – a glitch in the wiring, not a true emotional response to anything – it’s unlikely that things like cognitive behavior therapy would have much value in addressing it. You’d want to focus on things that directly affect the brain pathways – so, meds to turn down the volume, as it were. And avoiding things that turn up the volume on those pathways – whether that’s certain foods, or particular visual stimuli, or whatever.
— End quote
I think this is partially correct but not all. For most of us a good dose of what I call physiological anxiety makes it very hard to not also stress out psychologically. For those whom this disease is a new entity in their lives, they must learn to deal with their reaction to these symptoms and not freak out. I think CBT and counselling are very good for this if necessary. The problem is when anxiety is so cranked up that the body is locked into a near permanent fight or flight response. It becomes highly sensitised and I think this happens frequently to new MAVers (I got nailed). Meds can come in very handy for this in giving a person suffering with this junk a break from the anxiety to allow them to get a grip on the whole thing, understand the anxiety cycle, and allow the nervous system to calm down and migraine symptoms to drop off. It can take many weeks for nerves to desensitise.
These days when I get a lot of the physiological stuff happening I will hit it with valium until it burns out. It always does after a day or two so that I can at least get a decent sleep and keep MAV from going nuts.
For most of us a good dose of what I call physiological anxiety makes it very hard to not also stress out psychologically. For those whom this disease is a new entity in their lives, they must learn to deal with their reaction to these symptoms and not freak out. I think CBT and counselling are very good for this if necessary. The problem is when anxiety is so cranked up that the body is locked into a near permanent fight or flight response. It becomes highly sensitised and I think this happens frequently to new MAVers (I got nailed)
— End quote
The kid already has physiological anxiety. Long before this started, the kid was in a near-permanent flight-or-fight state. He’s already on meds, and he’s had a lot of therapy (both CBT and exposure response) over his short life, learning ways to deal with it. But the MAV-related anxiety has apparently spilled over all the defenses he already has.
Still, he’s better able to function now than he has been at times in the past. And he’s got experience with pushing through anxiety, although we all know how very hard that can be. For the psychological part of the anxiety, pushing through is the best thing, because, over time, that extinguishes the anxiety. But pushing through doesn’t seem to help with the physiological part, at least not that I’ve ever seen.
The MAV does seem to be subsiding, and hopefully the anxiety with it. And if the propranolol and lifestyle management can’t keep it at bay, then at some point, we’d probably have to look at increasing his anxiety meds. But we don’t want to change them if we don’t absolutely have to – finding a medication and a dose that provided adequate control without unbearable side effects was just too hard.
Hi MamaBear,
There is a medication called Promthazine or Phenergan, depending where you live. It is an antihistamine, but has some antianxiety properties and is prescribed for anxiety/sleep before surgery, motion sickness, nausea and insomnia. It has been helping me. It is commonly prescribed for kids. It might
be worth looking into. Other than sleepiness, no side effects for me…I take it at night.
Kelley
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