Experience with Misophonia anyone?

[Scarlett]

Anyone?  

[Terabith]

My oldest daughter has it, severely enough that we had to pull her out of public high school.

[Scarlett]

2 minutes ago, Terabith said:

My oldest daughter has it, severely enough that we had to pull her out of public high school.

Yikes.  May I ask how she is being treated?

My dh was diagnosed yesterday with it.  In hindsight I don't know how I didn't see it before.  Now so many things that were puzzling about his reactions to certain noises make so much sense.  His anxiety reached a distressing level and I called the doctor yesterday morning.  I still wasn't thinking it was directly related to sound. But anyway, he did a video appointment yesterday afternoon with our doctor, who knows dh very very well and he immediately knew what was going on with him.  It helps that dh is able to articulate his body's response to situations or whatever.  I am freaking out a little now constantly worried I am making a sound he can't tolerate.

[PeterPan]

Has he *always* had difficulties with this but they *increased* over the last few months? Is he already on a med for anxiety or considering one? It could be that the stress of the last few months has pushed his system beyond whatever capacity he had before to cope/mask.

I don't know if technically I would get diagnosed. I can tell you if you chew loudly around me I might hit you, that it's a visceral reaction. I have all kinds of funky issues. Our new DW turns on this fan for the heated and it drives me crazy. I have to go turn it off and open the door. We had a deep freeze that did that. We turned off our reverse osmosis water pump because I could hear it through walls and it was driving me crazy.

But I wouldn't make yourself feel guilty. If he can articulate what is bothering him at the moment, obviously try not to do it, turn it off, whatever. But he's going to have to treat himself and find his methods. If his anxiety is up and that is connected to an increase in symptoms, then treating the anxiety would make sense. My dd finds her sensory issues improve with the meds. I don't know how mine are doing. I mean, I haven't hit anyone and I'm allowing the dw to run, haha. I'm not saying it's a treatment or would make it perfect, just that anxiety flareups might make it worse, make it harder to cope the way he maybe had before.

 

[Selkie]

My dd17 has it. To help her deal with it, we've gotten her headphones, earplugs, and white noise machines (one for her bedroom and one for her workspace where she does school). Mealtime noises bother her, so she is always welcome to eat dinner in her room if she likes. She chooses to eat with us at the table about half the time.

She is concerned about college and how noisy it will be in her dorm. We're hoping she can get a single room, but of course everything is up in the air now for fall.

[Scarlett]

3 minutes ago, PeterPan said:

Has he *always* had difficulties with this but they *increased* over the last few months? Is he already on a med for anxiety or considering one? It could be that the stress of the last few months has pushed his system beyond whatever capacity he had before to cope/mask.

I don't know if technically I would get diagnosed. I can tell you if you chew loudly around me I might hit you, that it's a visceral reaction. I have all kinds of funky issues. Our new DW turns on this fan for the heated and it drives me crazy. I have to go turn it off and open the door. We had a deep freeze that did that. We turned off our reverse osmosis water pump because I could hear it through walls and it was driving me crazy.

But I wouldn't make yourself feel guilty. If he can articulate what is bothering him at the moment, obviously try not to do it, turn it off, whatever. But he's going to have to treat himself and find his methods. If his anxiety is up and that is connected to an increase in symptoms, then treating the anxiety would make sense. My dd finds her sensory issues improve with the meds. I don't know how mine are doing. I mean, I haven't hit anyone and I'm allowing the dw to run, haha. I'm not saying it's a treatment or would make it perfect, just that anxiety flareups might make it worse, make it harder to cope the way he maybe had before.

 

He knows he has always had issues with sounds. He said one of his brothers is worse than him.  When we first got married he could hear so many sounds that I could not hear....a cat meowing outside, water dripping slightly at the other end of the house.  The slightest 'ting' in a ceiling fan.  And when he was still working in the office prior to the virus and working from home he would complain to me about things his co workers did that just got on his nerves. The chewing of one co-worker etc.  Since I wasn't there I just thought maybe it was some extreme open mouth smacker, ya know?  But a few weeks ago I sat down next to him at the table where he was working.....I was eating my lunch.  I was not making unreasonable noise, but I suddenly felt him glaring at me and I glanced over at him and I got up and ate my lunch in the bedroom.  Again though I just chalked that up to him having deadlines and distractions making him stressed.  

So yes I would say the shut down has made it worse.....bad enough that he sought help for it.  He was telling me before the doctor appointment that he could feel a physical response on the surface of his skin (like he was being electrocuted) when he heard sounds.  Like the night before dss19 was sorting my recipes and stapling some things.  Dh said the sound of that stapler made him want to go insane.  So anyway, the doc is on it.  He is prescribing him Xanax....to take as needed I think, but maybe daily if that is needed.

[J-rap]

My ds has it.  As it turns out, it runs in the family.  (A couple of my dh's siblings have it.)  There's not really a cure....  Life is just harder for my ds.  He doesn't go anywhere without earplugs.  When we get together for family gatherings and everyone crowds into our home and sleeps overnight, he'll often stay at a hotel.  It does make relationships harder.  He'd rather stay home and have a quiet evening then go to a large, crowded event.  I'd say life really is harder for him partly as a result of it, but, he is also sensitive in other areas too -- not just sounds.  

We didn't understand it when he was growing up, and didn't know until about five years ago that this was a real thing.  I wish I had known when he was younger.  

[Scarlett]

2 minutes ago, J-rap said:

My ds has it.  As it turns out, it runs in the family.  (A couple of my dh's siblings have it.)  There's not really a cure....  Life is just harder for my ds.  He doesn't go anywhere without earplugs.  When we get together for family gatherings and everyone crowds into our home and sleeps overnight, he'll often stay at a hotel.  It does make relationships harder.  He'd rather stay home and have a quiet evening then go to a large, crowded event.  I'd say life really is harder for him partly as a result of it, but, he is also sensitive in other areas too -- not just sounds.  

We didn't understand it when he was growing up, and didn't know until about five years ago that this was a real thing.  I wish I had known when he was younger.  

Interesting.  My son (not dh's child) also has always been sensitive to sounds.  But I am pretty sure that is on the HSP spectrum, not Misophonia. But now I am wondering.  

[SKL]

My kid has it.  Her psych says it is highly correlated with OCD.

No treatment specifically for that (here), but at least there is an explanation for why she sometimes "overreacts" to people doing normal things like chewing and sliding forks on plates.  😛

[Moonhawk]

Oh my goodness, there is a diagnosis and name for this?!

Thank you thank you thank you.

[J-rap]

16 minutes ago, Scarlett said:

Interesting.  My son (not dh's child) also has always been sensitive to sounds.  But I am pretty sure that is on the HSP spectrum, not Misophonia. But now I am wondering.  

I'm pretty sure several of my children are on the HSP spectrum as well...  but only one of them seems to have misophonia.  I wouldn't be surprised if being an HSP person makes you also prone to misophonia.  I think oftentimes those things tend to blur together.

[Scarlett]

1 minute ago, Moonhawk said:

Oh my goodness, there is a diagnosis and name for this?!

Thank you thank you thank you.

https://misophoniainstitute.org/

[J-rap]

4 minutes ago, SKL said:

My kid has it.  Her psych says it is highly correlated with OCD.

No treatment specifically for that (here), but at least there is an explanation for why she sometimes "overreacts" to people doing normal things like chewing and sliding forks on plates.  😛

Interesting.  I'm quite certain that my ds with misophonia has OCD, or OCPD.

[Scarlett]

Just now, J-rap said:

I'm pretty sure several of my children are on the HSP spectrum as well...  but only one of them seems to have misophonia.  I wouldn't be surprised if being an HSP person makes you also prone to misophonia.  I think oftentimes those things tend to blur together.

Right. I can see that. Dss19 gets angry when he hears a drill or a power saw.  He wears headphones.  But I think he needs to be aware of this genetic component because I am thinking he probably has it too.  

[J-rap]

4 minutes ago, Scarlett said:

Right. I can see that. Dss19 gets angry when he hears a drill or a power saw.  He wears headphones.  But I think he needs to be aware of this genetic component because I am thinking he probably has it too.  

I've been learning that any of those HSP/OCD components are highly genetic.

[Martha in GA]

Quote

She is concerned about college and how noisy it will be in her dorm. We're hoping she can get a single room,

LOL, I would be concerned for your daughter as well! My dd, who doesn't have misophonia, complained about the constant noise in the dorms -- people running down the halls, etc. (especially in the middle of the night!), and she was in an end room. 

[Scarlett]

9 minutes ago, kand said:

If he’s needing it daily, a different med would be far preferable. For just occasional, or very short term use, a benzo is okay, but there are some serious issues with longer-term use, and they’re incredibly hard to get off of. The body accommodates rather quickly to them if they’re used consistently, so you end up with the medication no longer working, but the withdrawal symptoms too severe to go off of them.

One, possibly two, of my kids have this issue (the misophonia, not the benzo use. That’s an extended family member.)

Hopefully he will only need it occasionally.  What other meds work?  He does not want to be on anti depressants.

[Terabith]

No real treatment for misophonia that I've found.  My oldest wears headphones when there are objectionable sounds.  They're somewhat unusual in that it's not things like chewing that provoke the anxiety; it's things like the dog (across the street) barking, wind (that's the biggest and what has been life long).  They're taking an SSRI, which helped the depression/ anxiety that developed when this flared up, but I'm not sure if it's a chicken or the egg issue.  Did depression make misophonia worse?  Did the misophonia trigger the depression?  I think they worked together.  They had recovered more or less, were doing fine, discharged from therapy, until the plague happened, and the lack of social contact/ routine/ anxiety of situation has thrown them for a loop again, both in terms of anxiety/ depression and noise bothering them more.  Not sure what to do about it though. 

[Terabith]

Antidepressants are pretty darn helpful.  So is buspar, which is not but also not a benzo.  Benzos daily are seriously bad news.  

[skimomma]

My dh has it.  He has had it for as long as he remembers but has gotten worse with age.  Chewing or any other mouth noise is the biggest trigger.  We always eat with music on, gum is banned in our house, and he travels with sound blocking headphones.  He also gets wicked migraines and can usually tell when he is migraine-prone because sound bothers him even more in the hours/days leading up to a series of migraines (they always come in multiples).

We did not know this was a thing until about 10 years ago.  Once we learned about it, we have made adjustments that make it very manageable.  Before that, it caused a lot of bickering.  He would get enraged about someone, often me, chewing normally and politely with my mouth closed.  This is not a person who gets enraged about anything, really, so it was odd.  Once we found out it is a real thing and made some adjustments, it is usually fine.  Although more than once, I have feared for the safety of a fellow plane passenger or restaurant patron that is chewing loudly within earshot of dh!

[Scarlett]

8 minutes ago, skimomma said:

My dh has it.  He has had it for as long as he remembers but has gotten worse with age.  Chewing or any other mouth noise is the biggest trigger.  We always eat with music on, gum is banned in our house, and he travels with sound blocking headphones.  He also gets wicked migraines and can usually tell when he is migraine-prone because sound bothers him even more in the hours/days leading up to a series of migraines (they always come in multiples).

We did not know this was a thing until about 10 years ago.  Once we learned about it, we have made adjustments that make it very manageable.  Before that, it caused a lot of bickering.  He would get enraged about someone, often me, chewing normally and politely with my mouth closed.  This is not a person who gets enraged about anything, really, so it was odd.  Once we found out it is a real thing and made some adjustments, it is usually fine.  Although more than once, I have feared for the safety of a fellow plane passenger or restaurant patron that is chewing loudly within earshot of dh!

Yes. So much this.  Odd.  That is how I often would react to him in those situations.  We were on a zoom meeting with his family and his sister was coloring  a paper mask as we talked.  Her hands were out of sight of the camera and I did not hear a thing.  To dh it sounded like she was filing her nails and he told her she had to stop it.  In my mind I was like 'really dh?'.  The siblings all laughed it off and she did indeed stop so obviously there is a history there of dh and the other brother and sounds that bother them to the extreme. 

Apparently dh has always been aware of this.....and I guess he has tried to explain it to me but I didn't really 'hear' him.  And I do think it will be manageable now that it has a name and I can understand it more

[gardenmom5]

I've had painful physical reactions to normal sound on occasion.  sometimes it triggers - and sometimes it doesn't. it seems to be frequency based.  I've wondered if there is an underlying chemical response associated with it. 

[klmama]

I wonder if listening therapy would help for this?  Some OTs do this with special headphones and CDs.  

[freesia]

One of my ds has it and I have it when tired or stressed.  We've never done any therapy.  Our approach is balance.  Having realized it is an issue, the person with it needs to work on internal talk whereby they tell themselves that no one is doing the sound as an attack (and therefore said person may not attack verbally the noise maker) and also must work on coping mechanisms (which include recognizing when they are particularly sensitive and taking themselves to a quiet room, moving themselves, deep breathing, etc).  The other people also have to be considerate.  It is realistic for them to eat in the dining room, but eating a carrot in the living room when ds is there (or me eating peanuts while teaching ds at the table) is off limits.  Eater can go to the kitchen or dining room.  Repetitive noises, humming and whistling are banned from the house because no one needs to do any of those noises.  Plate scraping happens, it's life--person with misaphonia needs to cope--scraping every last bit of dinner is not necessary, other people can refrain.  Does that make sense?  We balance the need for effected people to cope (because being able to cope helps them survive in the world) with other people's need to learn to be sensitive.

[SKL]

Usually I don't even notice a sound until my kid asks, "are you doing that on purpose to annoy me?"  Or says "my ears just got raped."  It used to start fights, as the chewing of a certain auntie often triggered it.  (Still does, but the reaction is softer since it's a diagnosed condition.)

[PeterPan]

1 hour ago, J-rap said:

He doesn't go anywhere without earplugs.

Yeah, I wear earplugs everywhere except at home, because even sounds I *don't* hear are a problem, like wifi. We had a pump we turned on for an outdoor water feature and I hurt SO badly. All we can figure is it vibrated and caught the metal supports in the house, don't know. I couldn't hear it, but it was definitely a problem. We wrapped the pump in acoustical foam housing and now only run the feature when we have company.

1 hour ago, Terabith said:

They're taking an SSRI, which helped the depression/ anxiety that developed when this flared up, but I'm not sure if it's a chicken or the egg issue.

I think it's actually helping calm the system and overreactions, because my dd is saying the same thing about her meds and other sensory issues. OTs usually handle sensory and they don't prescribe meds, don't talk meds. But all that talk about cognitive strategies for her hyperresponsiveness (which is not actually misphonia but hyperresponsiveness)  went out when she got the SSRI/SNRI and had it drop. 

I don't know where mine is since I started the anxiety med, hmm. My dh still drives me crazy when he eats. Like really crazy. Now we did eat together a couple days ago, but it's literally so bad that it can be hard to eat with him. I'm not sure I want to be THAT medicated that I could put up with EVERYTHING, lol. 

51 minutes ago, Scarlett said:

Apparently dh has always been aware of this.....and I guess he has tried to explain it to me but I didn't really 'hear' him.  And I do think it will be manageable now that it has a name and I can understand it more

Sigh, my dh doesn't get it. It's like termites boring in your head. It takes everything you have to give to something and focuses on this one stupid thing (sometimes very faint) you're trying to process instead of what you should be doing.

Well maybe that means the anxiety meds are helping? You're right, my response to the dishwasher noise has been comparatively mild. Usually I go turn things off, rip them off the wall, uninstall, or otherwise do something really impolite. Clocks ticking can be bad. I have a timer installed for a light and the thing tick, ticks as it goes around. Fortunately I'm not around it most of the time. Dh had this electronic thing that had a light buzzing and apparently when I unplugged it I fried the computer control panel inside, oops. He was so hot to trot. The whole electronics system is now ruined and would cost $3k+ to replace. But I'm like dude, if you had listened when I said the thing was BUZZING you could have prevented it.

2 hours ago, Selkie said:

She is concerned about college and how noisy it will be in her dorm. We're hoping she can get a single room, but of course everything is up in the air now for fall.

You get accommodations like that with a doctor's recommendation, yes. You'll want to start now because the deadline for the request for accommodations may be very soon. My dd has dorm accommodations with a doctor's note, yes. 

[PeterPan]

2 hours ago, Scarlett said:

He is prescribing him

I hope it helps! Maybe help him make data or just look back over the day. Like not gone but a decrease or an improvement in his ability to be rational/calm with the problem solving. So if he response before was extreme, then lowering the intensity of that response to where he can manage it is improvement. I'm not sure we want what would happen if we medicate out everything. But a way to track improvement is good.

[Scarlett]

I talked to dh at lunch and I ask him if he could remember when this started with him.  He said, 'yes.  I remember exactly.  It was about one week after my dad died.'   😞  His dad died in a motorcycle accident when dh was 12.  From what I read on the .org site above trauma isn't the prevailing cause but I guess it can be a trigger.  

[Terabith]

In a perfect world, I'd get an OT for oldest child, but a) OTs seem to actually not know much about misophonia.  It sort of falls into a grey zone of sensory/ neurological/ psychiatric.  I asked on a large pediatric OT group, and I got very few responses beyond headphones.  b) In practice, there are literally NO OTs within 250 miles that treat teens in general, especially for sensory stuff.  I'd like to do OT, because I think chilling their sensory system in general would help, but really, when the community college was having in person classes and they were getting out and about, climbing stairs, and interacting with people, they were really doing fine.  Isolation and a global pandemic has been detrimental to mental health (and has ramped up sensory issues again), and we can't give them what they need to get better (social, structure, meaningful outside the house activity), so we're stuck with teletherapy and meds.  I really think we need to bump either their antidepressant or buspar, but psychiatrist doesn't want to because it's situational. Which, yeah, but don't have access to tools to fix situation.  

[Scarlett]

3 minutes ago, Terabith said:

In a perfect world, I'd get an OT for oldest child, but a) OTs seem to actually not know much about misophonia.  It sort of falls into a grey zone of sensory/ neurological/ psychiatric.  I asked on a large pediatric OT group, and I got very few responses beyond headphones.  b) In practice, there are literally NO OTs within 250 miles that treat teens in general, especially for sensory stuff.  I'd like to do OT, because I think chilling their sensory system in general would help, but really, when the community college was having in person classes and they were getting out and about, climbing stairs, and interacting with people, they were really doing fine.  Isolation and a global pandemic has been detrimental to mental health (and has ramped up sensory issues again), and we can't give them what they need to get better (social, structure, meaningful outside the house activity), so we're stuck with teletherapy and meds.  I really think we need to bump either their antidepressant or buspar, but psychiatrist doesn't want to because it's situational. Which, yeah, but don't have access to tools to fix situation.  

I think the stress of the pandemic has really affected dh too.  

[Scarlett]

I don't think people chewing normally bothers him.  But then I don't know.  He is excellent at managing himself until he can't. This is part of what is bothering me right now.  I want to do whatever I can to alleviate his suffering (he said the noises that bother him are like an electric shock)

[PeterPan]

3 hours ago, Scarlett said:

I talked to dh at lunch and I ask him if he could remember when this started with him.  He said, 'yes.  I remember exactly.  It was about one week after my dad died.'   😞  His dad died in a motorcycle accident when dh was 12.  From what I read on the .org site above trauma isn't the prevailing cause but I guess it can be a trigger.  

Trauma is stored in the body and has physical consequences, sure! There are bodywork techniques that help release the trauma. Your body has both declarative memory and *sensory* memory. So that sensory memory stores in parts of the body and can cause all kinds of physical problems till you release it, process it, deal with it. Here's the method a counselor taught me when I went in. There are others and whole books on trauma (like Van Der Kolk's The Body Keeps the Score https://www.amazon.com/Body-Keeps-Score-Healing-Trauma/dp/0143127748/ref=sr_1_4?dchild=1&keywords=healing+trauma&qid=1589492981&sr=8-4 ) but this is a place to start. Is he also hyporesponsive for sensory (like not realizing when he's in pain or hungry) and less aware of his emotions? 

It could end up that it's kind of connected pieces, where one thing aggravates another.

 

Edited May 14, 2020 by PeterPan

[Hen]

my youngest child has this.  For treatment, we saw a couselor, we tried a hypnotist, had her read a book on it and then finally when she was about 17, they put her on medication.  Hers is tied to anxiety, and anxiety seems to run in my family (one of my kids has a phobia of buttons!-which is tied to anxiety) the medication helped imenseley. She was also having some panic attacks at school, this was the main reason for the medication, but she said it has helped the misophonia.  She still doesn't like to be in the room with people eating chips, and for some meals I will make sure to have music playing on the table. Before the medication, I had to always have music playing during meals.  She also listens at night (sometimes) to some kind of adverse sounds stuff she found on youtube...people chewing, other irriating sounds.  A very interesting thing happened right after we saw the hypnotherispist and was trying to get her help for this...I got a report on 23 & Me, where I am doing a depression study- and a random new report popped up one night saying with my genetics, I was more likely to have misophonia.  I do not, but seeing it in my genes helped my daughter feel more like it is not her fault, that is is something in her makeup.  

edited to add: we cannot chew gum around her. also, when she finally started speaking up, and we were realizing it was a "thing" for her, she was often end up in explosive rage which then triggered crying. 

Edited May 15, 2020 by Hen

[Terabith]

28 minutes ago, Hen said:

 She was also having some panic attacks at school, this was the main reason for the medication, but she said it has helped the misophonia. 

That's very interesting.  My oldest was also having panic attacks at school, but they loved school.  They were having ptsd type responses in reactions to the SOUNDS of the (genuinely shockingly loud) school.  We pulled them out of school because of the panic attacks and started medication, but 90% of the issue was resolved when they weren't at school all day.  It was really bizarre, but thinking back on it, they had panic attacks from certain sounds even as a toddler.  Wind has been our nemesis her whole life.  

[Farrar]

One ds and I have a mild version, though not diagnosed or anything. It's really only very particular noises, like metal scraping. I can't function when it's happening... but it's a pretty small range of sounds. And then I have the creepy crawlies after.

My least favorite thing is when people realize that a sound is bothering you so they make it more. My mother has done this many times. She scrapes her fork on her teeth to remove the food. I'm twitchy just typing that. Ack. Like, WHY. WHY. She doubled down on it and told ds and I that she would eat however she wanted and we couldn't control her or tell her what to do. Geez. Most of the time, she's actually lovely, but every once in awhile. 

[PeterPan]

1 hour ago, Hen said:

.I got a report on 23 & Me, where I am doing a depression study- and a random new report popped up one night saying with my genetics, I was more likely to have misophonia. 

What was the gene? 

[J-rap]

3 hours ago, PeterPan said:

What was the gene? 

I was remembering that the last time I checked my dh's 23and me report (he's not really interested, so I do the checking!), it did list misophonia as a trait you are either likely or unlikely to have based on genetics.  So I went back in to check, and his said he is unlikely to have it.  (Although I still believe it comes from his side of the family, and where our ds gets it, even though my dh isn't sensitive to sound.)  This is what his report said, if it helps:

Your genotype at one tested marker

23andMe researchers identified one genetic marker associated with feeling rage at the sound of other people chewing. This genetic marker is located near the TENM2 gene which is involved in brain development. Your genetic variants at this marker are associated with slightly lower odds of having this trait.

MARKER TESTED	YOUR GENOTYPE
rs2937573	AA
Result: Lower odds of hating chewing sounds

And then later it says:

Marker	Evidence More information
rs2937573	'G' variant associated with hating chewing sounds: OR = 1.2, p-value = 2.0 x 10-39

 

 

[Ausmumof3]

My dh hates the sound of chewing and ds has just started.  To be honest though I have some noises that make my skin crawl and I mostly just learn to put up with it or remove myself.  I think maybe I was more socialised to shut up and deal or something.  

[Scarlett]

Dh and I Zoomed with his brother last night.  Apparently they have been aware that he (the brother)  has it for years.  They discussed coping strategies and such.  The brother says he has memories of it before their father's death. (the brother was 10 and dh was 12).

I picked up dh's Rx after work yesterday.  Doc called in Klonopin.  I thought it was going to be Xanax.  So it will certainly be last resort for dh.  

I think he felt better just talking about it a lot last night.  

[PeterPan]

1 hour ago, Scarlett said:

So it will certainly be last resort for dh. 

Oh my. I don't really know that med, but if the med being offered has side effects or isn't the med he wants, ask for a different med, kwim? I swear, some of these docs and pdocs are cracked in the head. My dd walked into a pdoc and the guy wanted to put her on BENZOS straight off the bat, said he put everyone on them. My lands. So I'm like you come to my doc, my guy has his head on straight, there are more conservative ways to start. And they found things. 

And when I went in, I didn't even really want on what my dd is on. She's on an SNRI, and that was just more than I wanted. My doc gave me this little thing, and it's literally take it or leave it. Not addictive, no commitment, just let it wear off and move on if you don't like. And if I want to take it once a day or 3X it's my business. So your dh should ask for more options if he doesn't like the option he was given. Or try another doc. Because there are lower key, lower commitment options.

Ok, I just googled and see it's a benzo. I see why he's frustrated. Well there were more options. I think these docs just have how they roll.  

1 hour ago, Scarlett said:

I think he felt better just talking about it a lot last night. 

Absolutely! Cognitive strategies, talking it through, etc. are always appropriate. I'm more selfaware now (interoception, kelly mahler's work) and so I can feel it happening and be more rational and make a choice. Like I only stop the movie and say something instead of yelling.

So it's a process for him to figure out what he wants, definitely. Can't go wrong with things that lower stress and improve self-regulation and self-awareness. https://www.kelly-mahler.com/what-is-interoception/

Edited May 15, 2020 by PeterPan

[PeterPan]

PS. Did he try TRE yet? I know it looks like a pain in the butt, but it actually goes really fast the more you do it. I did about 40 sessions in short order (just me at home) and now my system just does it.

[Scarlett]

3 minutes ago, PeterPan said:

PS. Did he try TRE yet? I know it looks like a pain in the butt, but it actually goes really fast the more you do it. I did about 40 sessions in short order (just me at home) and now my system just does it.

I did  not show it to him yet.

And as for the med I think the doctor spent a lot of time with dh on video and I think he knows dh very well.  I had called earlier and told them that his anxiety was off the charts.  So I don't necessarily think the doctor over reacted....he doesn't want dh to be on this constantly...but when it gets bad he probably does need something strong.  I think just knowing it is there will help him cope.  

[Hen]

Peter Pan:

here is the gene info from 23&me....hopefully I can attach the photo ...ok that didn't work, I'll try to insert it

Your genotype at one tested marker

23andMe researchers identified one genetic marker associated with feeling rage at the sound of other people chewing. This genetic marker is located near the TENM2 gene which is involved in brain development. Your genetic variants at this marker are associated with slightly higher odds of having this trait.

MARKER TESTED	YOUR GENOTYPE
rs2937573	GG
Result: Higher odds of hating chewing sounds

 

Edited May 16, 2020 by Hen

[katilac]

On 5/14/2020 at 11:15 AM, Scarlett said:

Hopefully he will only need it occasionally.  What other meds work?  He does not want to be on anti depressants.

Does he have facts-based reasons for this or just a knee jerk reaction? Because I am not against the careful use of Xanax, but it's just a fact that they have a strong potential for addiction and abuse that antidepressants do not. Antidepressants can be very effective in treating OCD for many people, and this is strongly correlated with OCD. While people can certainly have a bad reaction to a certain antidepressant, they are considered quite safe (and you can most definitely have a bad reaction to benzos as well). 

11 hours ago, Scarlett said:

So I don't necessarily think the doctor over reacted....he doesn't want dh to be on this constantly...but when it gets bad he probably does need something strong.  I think just knowing it is there will help him cope.  

I don't think the doctor necessarily overreacted by writing a Xanax scrip, but I would be wanting to look at longer term solutions as well. It's common to prescribe antidepressants daily, long-term use and something like Xanax for what they usually call breakthrough anxiety. If the doc doesn't want him on Xanax constantly, then they need to be looking at something else that will help that he can be on constantly. The idea is that, as the antidepressant starts working it reduces the need for breakthrough medication. Does dh have a followup scheduled? 

Edited May 16, 2020 by katilac

[Scarlett]

28 minutes ago, katilac said:

Does he have facts-based reasons for this or just a knee jerk reaction? Because I am not against the careful use of Xanax, but it's just a fact that they have a strong potential for addiction and abuse that antidepressants do not. Antidepressants can be very effective in treating OCD for many people, and this is strongly correlated with OCD. While people can certainly have a bad reaction to a certain antidepressant, they are considered quite safe (and you can most definitely have a bad reaction to benzos as well). 

I don't think the doctor necessarily overreacted by writing a Xanax scrip, but I would be wanting to look at longer term solutions as well. It's common to prescribe antidepressants daily, long-term use and something like Xanax for what they usually call breakthrough anxiety. If the doc doesn't want him on Xanax constantly, then they need to be looking at something else that will help that he can be on constantly. The idea is that, as the antidepressant starts working it reduces the need for breakthrough medication. Does dh have a followup scheduled? 

I have been on antidepressants a couple of times in my life and my experience was not good.  And I have a lot of friends who got on them and honestly I believe it contributed to a huge amount of weight gain.  This is not to say they are not vital for some people.....but it is something I hope to avoid and he shares my feelings.

Dh has broken his back, had a double fusion, 12 knee surgeries including a total knee replacement, a major neck surgery, sick for 3 months to the point he couldn’t get out  of bed,  a gall bladder removed and now has another disc in his back that needs fused.  In all of that he rarely took pain meds even though he has had strong opioids prescribed many times.  He has a back doctor and a knee doctor who will both prescribe him pain meds. He just doesn’t like to take them.  He doesn’t like how the make him feel, 

[PeterPan]

8 hours ago, Scarlett said:

In all of that he rarely took pain meds

You think he's tough man or you think he's hypo responsive for pain? Just pairing that sensory issue with the sensory of the sound. And then yeah, anxiety about taking meds, amped anxiety leading to bigger issues with sensory. 

So genetics would be your way to explain the funky reactions. I'm not saying they're without side effects, but if he works on his own sensory awareness (interoception), then he can decide for himself the tradeoffs. Anxiety and OCD etc. can be tackled with cognitive strategies, sure. Ironically, the mindfulness you'd do as part of that is also a major step in improving interoception. 

But if hypo responsiveness for sensory and tough guy image merge and get validated by anxiety, then it's hard to sell why he'd like to work on his sensory. 

Kelly Mahler has a new study out showing caregivers *dramatically* under report the sensory awareness deficits of people they're filling out forms on. So if you at all think he has some funkiness with his self-awareness, it's probably much more significant than even you realize. So it wouldn't be a rabbit trail to work on it and it's part and parcel of improving mental health if he wants cognitive strategies.

https://www.kelly-mahler.com/what-is-interoception/  

9 hours ago, katilac said:

doesn't want him on Xanax constantly, then they need to be looking at something else that will help that he can be on constantly.

In addition to the SSRI/SNRIs you also have something like Buspar. I'm not sure how many meds there are like this. But a little time on the meds could tamp it down enough that he can sort out for himself what he wants. 

There's also some research on using tylenol for emotional pain. Physical and emotional pain hit the same points in the brain. It's why under registering pain is so significant. Like me, I sleep through root canals and my dh is traumatized, lol. 

Here's something he can do right away that is non med. https://www.arcvic.org.au/34-resources/402-vagus-nerve-exercises  Vagus nerve exercises. And some of it is really simple, like humming. The counselor I used had me do them after a body scan (that mindfulness, interoception thing again). So you can body scan every day, 3-4X a day. Then pick a body part that hurts or just any body part and HUM and direct your attention to it. Doesn't take long. 

If he does just those things, with body scans 3-4X a day and the humming or other vagus nerve exercises, he could see where he's at. Like give it a few days, a week, see what percentage it gets him. It's stuff he can do *in the moment* when stuff is driving him crazy, because you can hum anywhere.

Here's the link Kelly uses for teaching body scans. https://www.mindful.org/mindfulness-meditation-guided-practices/  There's not really a wrong way to do it. You're just systematically direction attention to body parts and really trying to feel them and possibly put words to what you're feeling. When I started, I would black out when scanning various body parts. It's like there were walls, dark areas, and if I tried to go into them I would literally just dissociate, fall asleep, be gone. And I was so unaware I didn't realize I had been using it like a freakish superpower. I could just do that and take a nap INSTANTLY, anywhere, lol. Now I keep those areas clear and I make sure I can feel my body. But yeah, weird things happen that you can't see from the outside, lol.

Edited May 16, 2020 by PeterPan

[Scarlett]

He has a very high tolerance for pain. He does not have anxiety about taking meds.