Quantcast

AVM Survivors Network

Curable App - and Classical Music - the weird connections keep coming


#1

Hi all,

I had an odd thing today - but a good thing. If you don’t recall, I’m a 40 year AVM survivor (53 years old) and been dealing with pulsatile tinnitus since around 2011-12 or so. It’s been a nuisance until the Embolization that was done in January of 2018 that probably quadrupled the sound and has, in addition to a lot of other problems, essentially made me almost completely deaf because I can’t hear over the noise in my ears - right ear is pulsatile and left ear is constant. I’ve told you that I’ve been trying that new app Curable which is supposed to address the brain body nerve connections in ways that are different than normal treat the symptom pain meds. I’ve found two other times where it has made a brief but significant difference in my headaches. One was when I stopped doing yard work and concentrated on deep slow breathing to get my pulse rate back down. The other one was when I purposely stopped thinking about my upcoming appt with my neurologist and instead thought about the chocolate chip cookie I was going to buy as a reward for making it through.

Today I found a third. In some of the reading and videos that Curable has, it says that it appears that there is a connection between the brain, calm music - classical piano things like that - and feeling better. So, today, my wife was at work, my kids were at school, I popped the hearing aids out, put the blue tooth earbuds in on a classical piano station through Amazon music. I had probably three hours where I was able to get stuff done - some office stuff, some cleaning, some actual plumbing repair - and I didn’t have a headache, I didn’t hear my pulse, it’s the first time since January 29, 2018 that I can say I actually felt “normal” for a while.

And then my kids came home from school and the dogs started barking and I’m back to where I was. But it showed me something very important.

Curable just might be on to something here.

Stay tuned,

Tom


#2

Hence the reason for the saying “Music calms the savage beasts.”

The phrase was coined by William Congreve, in his play The Mourning Bride written in 1697. It’s the opening line of the play and the actual statement is: Musick has Charms to sooth a savage Breast, To soften Rocks, or bend a knotted Oak.

Music does amazing things. It’s been found that listening to classical music also increases math test scores in general. And there’s the too-true statement from Frank Ocean — ‘When you’re happy, you enjoy the music but when you’re sad, you undestand the lyrics.’

I’m a writer by trade and I know for a fact I write better and faster with music playing, especially some sort of classical. There’s something about the complicated classical musical score that connects deep in the brain. We don’t know how, what, or why, but we know it works.

I’m glad you found it so helpful! Keep us posted as you continue to experiment!

azurelle


#3

I agree that music is magic. It engages a different part of the brain, so absolutely fabulous that it seems to have that reconnection of different brain parts for you in your situation.

I remember a television programme about Greg Storey in which we learned that Greg was able to control the thousands of tics that he experiences as part of his Tourette’s Syndrome through music – to the extent that he basically lives his day humming or imagining music (in his case, particularly percussion) as that seems to keep a part of his mind busy and he gets little to no tics.

I hope it really helps.

Well done for sharing. It might help others.

Lots of love,

Richard


#4

An update on some unusual things that I’ve found as I’ve worked on the music idea…

Day 1 - kids to school - quiet time - devotions/journalling, then put the headphones in and started classical piano music. Spent the next three hours in a variety of tasks at home - felt pretty good - and I haven’t been able to say that in a long time.

Day 2 - kids to school - no quiet time - put headphones in and got busy - didn’t work - headaches were worse, dizziness was worse, not a good day. Oh and the home brewed ice tea today had a little more caffeine than on Day 1. Headaches were back to normal - in other words, not good.

Day 3 - today - quiet time - devotions/journalling, then headphones and Amazon Music’s classical piano station - spent the next 5 hours alternating between cleaning and laundry (manual labor - hah!) and office work - (Facebook etc.) and the headaches were much better than Day 2. Kids got home from school, headphones came off, hearing aids went in and headaches started coming up. By tonight, I was pretty much toast - brain fog, headache was a 6 to a 7 and exhausted.

So, was it the quiet time before the music? Was it the lower caffeine? I use 7 tea bags to brew a gallon of ice tea - prior to this, I was at a 5 caf and 2 decaf ratio. Day 1 was 1 caf and 6 decaf. But then on Day 2 I went to 2 caffeinated and 5 decaf bags.

Either way, whatever it is, the $76 I’ve spent on the Curable App for a year has done more than what my neuro doc and his meds have and I’ve spent twice that easy (not counting what insurance pays).

We’re on to something here. Going to keep working with it. I’ll keep you all in the loop - check it out for yourself. Oh and I do not get any sort of referral fees if you sign up. But if it can make a difference for you, I’d love to hear about it.

Tom


#5

Completly random thought for you, Tom. Maybe it’s the headphones? Maybe it would work better and more consistently to have the music in the room in general rather than pumped directly into your ears? I’m not saying you do this but people in general use headphones at a volume that is too high to be healthy. So maybe headphones with the volume adjusted down?

azurelle


#6

Az, (can I call you Az for short?)

I’ve actually tried that and it doesn’t work as well - for a couple of reasons - when I have earbuds in, it weeds out a large part of the outside noise - not all of it but a good bit of it, and also, I do have to make sure that the music is calm, quieter kind of music - classical piano music, Simon and Garfunkel, Yo Yo Ma and thinks like that and it’s barely loud enough that I can hear it.

Does that make sense?

That does create two problems that I haven’t figured out how to solve yet - how can I wear noise cancelling headphones with other people around - and not totally shut them out or shut me off from them? And the other question - so far, when I take the headphones off and put the hearing aids back in and get back to normal noise and conversation, the headaches and the internal noise return - there doesn’t seem to be any carryover beyond that time. Does that make sense? It’s sort of like ibuprofen - it lasts for 6 hours and only 6 hours. I want to figure out a way to get it to the point where I can do it for _________ per day and it will lower the headache and noise symptoms by _________ for the day. That’s not asking too much is it?

Tom


#7

Yes, I can see that managing exactly how the music is “delivered” to you for maximum effect and minimum spin off problems is a bit of a puzzle.

My husband bought himself a pair of Bose noise cancelling headphones two weeks ago, and they are incredible for listening to music. Unfortunately, as you say, it totally shuts him off from his environment and I no longer exist when those headphones are on. Wait a minute … maybe …no, that couldn’t have been the real motive for the purchase, could it? LOL

Seenie from Moderator Support


#8

My wife & son bought me some nice noise-cancelling headphones for Christmas a couple of years ago but I can’t use them because they constantly talk to me when I’m using them. It becomes ridiculous.

The thing you need, I think, is variable noise cancelling headphones, whereby the amount of external noise cancelled out is adjustable with a volume control. So I googled to see if such things even exist and they do!. They sound rather expensive but might be right.

Hope this helps,

Richard


#9

Dick - can you post a link where you found those? Christmas is coming up - they might be my entire Christmas list…


#10

Click on the “and they do!” text above.


#11

For some reason that didn’t show up as a link on my ipad…


#12

Tom,

Thought about you again last night.

The power of the Internet meant that my son shared a video with us as we were settled in front of the TV. He has hurt his knee, so is spending time with it raised, Mrs D has the awful cold that he had last week and I’m doing more of the running around than I normally do as a result. So common time was spent watching a bit of TV. I thought of you.

The video he shared was this one:

Which is a complex video to see, as it is a programme-within-a-programme. The “inner” programme was called Educating Yorkshire, about life in a Yorkshire middle school and in this case, the end of the year and a young lad called Musharaf.

The “wrapper” programme is called Gogglebox, in which various families sit down to watch (and react to) the programmes of the week, from Steph & Dom who run a hotel in Kent, to retired teacher Leon and his wife June in Liverpool and others dotted about the UK. The video sets the scene but is potentially confusing if you don’t understand the construct. I think the combination of the two programmes works very well here and makes for a better, more emotional experience!

Enjoy!

Richard