Matt's huge struggle with agorahpobia

[Steely]

Wow - Matt just opened up, and pretty much caught me off guard, over his battle with agoraphobia. I was getting on him, and mad, because he is not making steps towards a job, or classes - and he just exploded. After about 20 minutes of seething rage, he turned the conversation back to being self reflective and started talking about his overwhelming fear of "the world".

I have known this about him for awhile, probably since he was 16 he started struggling with it. Sometimes I now wonder if that is one of the reasons he got in so much trouble in elementary school, he just could not take the constant interpersonal stimulation. He has NonVerbal Learning Disorder (NVLD), which I have read can cause agoraphobia as they lead into adult hood.

Just the torment he goes through to even go to the corner store really surprised me. Not to mention actually shopping at a real store - that has him in lock down right now. I mean, I knew this problem was there, but not to this extent. He is really in agony and so mad at himself. Soooo much self hatred because in his mind he is such a 'wimp".

I told him he had to do an outing every day to start to desensitize himself to the feelings that arise when he is in public. That is the only thing I can think of at the moment, since he refuses counseling. He also cannot tolerate any of the anti-anxiety or SSRIs because of his bi-polar. He goes ballistic. So he feels really at a loss, and hates himself, and of course keeps saying if this doesn't stop he will kill himself.

God - it makes me sad. He has more challenges in his brain than 10 people combined. But this agoraphobia is a dealbreaker, because if he can't get out to get help and meet people - he will just dry up and be lost forever.

Any ideas on something that might help? Anybody else out there struggle with this or know someone who has.

 

[InsaneCdn]

Well, I'm not a specialst on agoraphobia, but I do know something about panic and anxiety...

You probably already know this stuff, but just in case...
It really helps to take two or three "settings" and figure out the list of triggers involved - such as crowds, noise, enclosed space, requirement for interaction, whatever else.
Then, look at the one that has the shortest list.
Figure out a game plan for how to tackle the triggers.
Then, work on being able to tolerate going into that setting, and eventually actually "doing" something there.

Example: Shopping at corner store.
Triggers could be crowds, enclosed space, difficulty finding the right thing, fear of not having enough money to pay for it, (whatever).
Crowds can be dealt with by carefully chosing time of day.
Enclosed space - might need to work this up slowly... at first, just go TO the place, then home; once that is comfortable, walk in the door, browse at the first thing you see, and go home... and build up until you can stand in there for 3 minutes (or however long you will need for the next step).
Next, browse long enough to figure out the price for a jug of milk.
Get comfortable going to that part of the store...
Then, knowing
- how long it will take
- where to find what you need
- how much it will cost
you can actually plan to go in there and get THAT one thing.

Initially, you really DO need to break it down that fine.

Other possible locations include:
- a workout centre (only when its quiet)
- library
- second hand store (but NOT the one Shari works at!)
- doctor's clinic (the one he will end up needing to use)

Start SLOW. Build SLOW. It could take several months to get past the first hurdle.
Each one after that comes faster - and the originals can be expanded.

The other tip is... learn to deal with the symptoms - how to turn down the panic, how to reduce your own blood pressure and slow your breathing, and so on. Panic feeds panic... calm feeds calm. Calm your body and you WILL calm your mind.

 

[buddy]

I can't imagine the struggle that must be for him. Insane, that is a really thoughtful post. I was thinking when I read the story that I was pretty impressed by his insight and how he calmed himself to talk to you. Knowing what the problem is at least better than trying to figure out why he is struggling and not knowing the main cause. Seems like I am puzzling thru things on a daily basis. So, that was cool. Are there people who come to homes for people who suffer from this. Would he be more open to that than going somewhere? Just wondering, I am sure he will be resistant to most suggestions but thought I'd throw it out there. He is lucky to have you for support. Yes, it is sad to see them struggle so, especially when they are truly sad about it.

 

[Steely]

Thanks Ins.....that is similar to what I told him. For now he is going to walk to the corner store (which is actually a mile one way) each day to buy something. I like the other ideas as well. His big hurdle right now is the bus system because he does not drive. He rode the bust twice with a friend, and I thought he was OK, but he said not so much. Alone he panics - and of course he is too proud to ask the friend to go with him all the time, which I understand - no one wants to burden someone else. So things like the library etc are out until he can overcome the bus phobia. That is why walking for now is the best option. He has a bike, but he says he would rather walk. I don't know. I offered to ride the bus and mass transit system with him - but no - I am his "mom" (even if I pretended to be a stranger).

Yes, buddy, I agree - the conversation was so insightful - and he was SO articulate about it all I was really impressed. Usually it all just comes out in massive angry outbursts. It took us 2 1/2 hours on the phone to get to that place - but that is OK. I don't think he would ever let anyone come to his house and help - he is very cognizant of what he considers to be "cool" and not "cool" - and if anything that is one of his biggest obstacles. He wants to be "normal" so he refuses help in every way. If he could be confident enough to accept help - it would solve many things.

 

[InsaneCdn]

Steely -
Don't know if they have this where you are - but some places have a "mentor" system - where an assigned (and paid for) mentor works with the person as though they are a friend... and the two plan "outings" together just for the purpose of working through this stuff.

Several challenges of course - your ins may or may not pay for it, and first you have to find it.. but the fact that this is a "job" for this person, means it isn't putting them out to do this stuff - BUT to anyone else, this is "just a friend".

Another one that sometimes works is... (for Matt, given the situation, probably a long shot, but...) could he do it with Grandma, and make it look like HE is the helper for HER? That also looks more normal.

 

[Liahona]

Hi, I don't normally post here. I don't know anything about the agoraphobia but I have an idea for a job for him. You said this talk started because he isn't going forward with a job or classes. There are call centers that let people work from home. He would have to have the internet and get their machines. A job might help his self-esteem and the money would help pay for a mentor (or what ever help he feels he needs.)

 

[Hound dog]

I've not read the other responses. But I developed a severe case after my accident. psychiatrist said it was part of the PTSD.

Actually, since husband's death, I'm fighting it once again. And trust me, fighting is the proper word.

I have to literally force myself to go out of the house. And I do force myself. The first time I didn't know if it would ever get better........ This time I know it's possible, which helps. The more I get out, even if it's just to walk down the alley to easy child's house, the better. Small outings help at first. And he shouldn't be upset with himself if in the middle of an outing he changes his mind and wants to return home. Every step out, is a good step. Going with someone you trust can be helpful, but not always, especially when you first start to desensitize yourself.

I had no idea why I had such a reaction to the accident. And for the longest time I had no control over the anxiety it caused.....and that was probably the trigger for the agoraphobia, because the anxiety was majorly intense and overwhelming. It was much simpler to avoid it. husband's death seems to have thrown my anxiety back up through the roof again. So far I'm mostly only leaving the house when I have to, I'm working on going out just for the sake of getting out.

It's a slow process. And I'm gonna tell you honestly anti anxiety medications didn't really help with this issue at all. It was one I had to work with the psychiatrist and come up with small goals that led to bigger goals.....that led me to going to school.....ect.

I empathize with him. But he can work to make it much better.

(((hugs)))

 

[DammitJanet]

Odd Lisa...when I came home from the hospital I had the same reaction. Mine was worse because the stores had items that seemed to be talking to me too! That just made it all worse when the corn started telling me strange things...lol.

Now I dont know why you say he cant take any anti-anxiety medications because of the bipolar. I am on them and am bipolar. What anxiety medications has he tried? Maybe he just hasnt tried one that will work. I know I cant touch a SSRI and wouldnt advise that at all. If all he has tried is something like buspar, then no, I wouldnt try that. Im thinking more along the lines of the xanax er that I take. Its extended release xanax and you take it once a day and it stays in your body all day and helps keep you calm. If he took it in the morning, he would have the relief for 24 hours. Otherwise they do have klonopin and ativan. Even vistaril can help some people though it never did a thing for me.

I am not one who likes big places or crowds. I make myself go to places I have to go. There are certain places I have no choice. I have to go out to the stores because no one else is going to do it. If I could stay inside I would. Number one for me, it hurts. Number two, I hate it. But what am I gonna do? Gotta do it.

 

[BusynMember]

I'm with Janet here. I have had times where I've bordered on agoraphobia, mostly due to the fear I'd have a panic attack in public and not be able to get back to my "safe" place fast enough and maybe pass out or pee in my pants (yes, this really was a fear I had!) I did not go anywhere unless my "safe" person was with me. Anti-anxiety medications actually and literally made it easy for me to leave the house and go about my business (and I always had an extra pill in case I started freaking out while "out there.") I take clonazapan and have a mood disorder, similar to mild bipolar and have no idea why your son couldn't take anti-anxiety medication. Were you given an explanation? Since the Clonazapan, I have not had a panic attack in well over ten years and have no fear of going anywhere.

 

[DammitJanet]

Well I can still have fears of going out but I manage. Heck, even though the cans and isles were talking to me, I managed to get to Cleveland...lol.

 

[Elsieshaye]

Eighteen years ago, as part of PPD I was severely agoraphobic (could not leave the apartment even to go across the hall to the trash chute), but all my life I've had trouble with anxiety around crowds and new places. Not sure if it's some variant of social anxiety or complex PTSD. I fake it pretty well most of the time, but if something is upsetting me I go into "hermit mode" and don't leave the house or interact with people except for work. (When it was severe, even work wasn't possible, and my then-husband had to accompany me everywhere.) No advice, because the only things that helped me were medications (mostly for the depression) and therapy. If he's willing to work on desensitization, that's awesome, and I second the advice to take it slow and be kind to himself if he feels like turning back in the middle. The point of desensitization is to gradually increase your tolerance for the anxiety, and to have positive experiences that you can associate with being outside - not to punish yourself by attempting to endure the currently unendurable.

 

[Steely]

Well Matt is a complicated creature - for sure. All anti anxiety medications make him get suicidal. I mean - within 6 hours he is holding his head screaming. doctors have tried them over and over again with him - and every single time it makes his mood worse. He also took a whole bottle after his Aunt died in a suicide attempt, which in another reason I would not want him to have them. They cause him to be so much a mess that he now tells doctors that he is "allergic" to them, cause he kinda is. He also tells them he is allergic to steroids which is also true - because they make him extremely manic.

medication wise - he is very very difficult. He did do OK on Effexor so I am wondering if a SNRI might work again? I don't know.

I believe almost all of this is PTSD and anxiety related - and if he won't go to therapy this is going to be a hard road. I will do a search and see if they have any clinics in his area that specialize in this. He seems to think he is the only one that has this problem - and I just chuckled - I was like Matt that is why there is a NAME for it! Many people have this!!! So what might help some is if he could get connected to other people that struggle with this.

As far as a job from home - the problem is that he has no job skills. He has to get into some sort of vocational program or something that will facilitate his life in a forward motion. Sigh.......

 

[DammitJanet]

I cant do most steroids. Like those steripred packs that they want you to take and work down on...oh my gosh....NOOOOOOOOOOOOOOOOOOOOOOO. and there was one urgent care clinic here that every time I went there wanted to give me a shot and hang an IV drip that had some form of steroid in it. At first I didnt know what was in it and I went nuts the first time but the next time I went I asked them what was in what they were about to give me and I went whoa...no way. They didnt want to believe me that I couldnt take it. Had never heard that bipolar patients couldnt take steroids. Well, I wasnt going to argue with them or take the time to school them I just told them to find another treatment. Thats the place that did it to me anyway and it sent my ear infection into overdrive and I ended up with the meningitis.

I can take very small doses in my joints but I have to only do one knee at a time or it does effect me. I had one knee and one in my back one time and I had to call my doctor for 3 days worth of valium to calm me down because it started to rev me up.

 

[Steely]

Yep Janet...that is Matt. On the first day of 6th grade he had poison ivy so bad it was in his mouth and throat. I took him in to get a steroid shot.....and that was that for the sixth grade. He spiraled so fast and so far I had to quit my job of ten years and do homeschool for awhile until he could get stable. Horrible.

 

[InsaneCdn]

Hi, Steely -

Not sure if this is out of line or not, but.. people with challenges and no job skills... hmmm...

Around here, there are a number of non-profits that start someone like Matt off as a volunteer. It might be as simple as coming in once a day to sweep the floor, or clean the sinks, or take "tickets" at a fundraiser or help set up chairs for an event - some small task. They work with these people to build them up until they have the confidence to go to school, or at least to challenge a real job somewhere.

Matt isn't ready for that yet. He needs to get "out" first, be comfortable being out. But it might not hurt to research volunteer job-skills-development opportunities for when he is ready...

 

[Steely]

Thanks Ins....the Goodwill (thrift store) here is great about this sort of thing....and he has one right across the street from him. However - he needs to mentally erase the label he has put on everything under the sun. Goodwill is stupid, would be his comment-I am not doing that. How much of that is fear, and how much of it is him wanting to be cool still I don't know. It is very frustrating. I found some amazing support groups in Portland - but I haven't even asked him if he is interested yet. I don't want to hear the typical answer. He will have to get sick and tired enough of this to change it - somehow. On a positive note he did sign up to take 5 classes at the college across the street - so we will see.

 

[InsaneCdn]

If he hits the wall with classes... colleges often will work with you on this, as well... volunteer in the library, or the cafeteria line... and I can see where THAT is way more "cool" than "Goodwill". (My difficult child has that "cool" issue as well)
The advantage to stuff at the College is that in getting past the panic in that setting, it sets the stage for classes as well. Conversely... if he can handle the classes, it may set the stage for a small "job" there as a stepping stone...

<humming THAT song in my head again ... for Matt this time...>

 

[CrazyinVA]

Oldest's very first psychiatric hospital admission was for "prednisone-induced psychosis" when she was 11. Back then, steroids were the first course of treatment for Crohn's. It was awful. It also led to her bipolar diagnosis, however, because the psychiatrist said "ya know, sometimes steroids have this reaction in bipolar patients." Duh. I couldn't convince the GI to wean her completely off of the prednisone, because she was so sick, so we tried reduced doses for awhile... until she also developed cataracts in her eyes (yes, at age 11) and the eye doctor called the GI and said "get this child OFF of these medications RIGHT NOW." Her moods got slightly better, but her Crohn's got much worse, unfortunately. It was a rough few years. She knows now to never let them give her steroids, even for allergic reactions. She has so many weird reactions to things, though .. messed up immune system (she even got chicken pox twice). It's frustrating.

It's frustrating when your kid has "rare" side effects from medications, I know. Not being able to take anti-anxiety medications definitely makes treatment more of a challenge for Matt. Hope you can help him figure this out.

 

[DDD]

I have only known one person who suffered from that disability and she had the financial resources to have everything delivered to her home...a three story elegant home where she over the years ended up living solely on the first floor and then in limited space therein.

On a much more positive note, Matt shared his fears. Good grief, that is huge! It acknowledges his problem and also acknowledges how much he trusts you. I'm in awe. If you ever need reassurance that you are a wonderful Mom that is it. Congrats on being his safe person. The fact that he has signed up for a full college load of classes is also wonderful news. I'm rooting for him all the way. What a burden it must have been on him to keep his secret..and now, he has shared. Awesome. I am positive that there are a bunch of web sites on this disorder but the fact that he shared and he is trying college.....sounds really optimistic to me. Hugs. DDD

 

[HaoZi]

Also prone to anxiety in social situations, though not to the degrees discussed. How does Matt feel about omega-3 supplements, decaf/green/ or white tea (or even hot chocolate), and meditation?