Three years of hell - advice please

[DomRavioli]

Hi all,

Newbie here. I'm Dom, 31 and from manchester. I have had agoraphobia for three years, and am struggling to find anything to help. I've tried SSRIs, SNRIs, NASSAs, Antipsychotics, TCAs (allergic to every last one of them from severe gastric issues to anaphalxis with Quetiapine - I carry an epipen but I didn't want to use it!), meditation (pointless for someone with severe anxiety), applied relaxation (again pointless - It didn't relax me, I just felt completely unhappy the whole six hours), CBT (I know its broken, I don't know how to fix it. Saying don't think bad things doesn't really work when everything that comes out of your brain is negative), exposure therapy (actually made me worse to the point I haven't been out for the last three months. Not even emptied a bin, I have to ask others to do it for me, I shop online and go without a lot because I cannot face the world) and even hypnotherapy (waste of money).

I am out of options. I am so severely ill that I have contemplated doing that thing we aren't supposed to do, as I see no way out of this. I have lost my job, my home, my friends and my family. My GP surgery are useless, CMHT don't take on agoraphobics and psychology and psychiatry can only see me if I can make it the 8 miles to see them, and that is not going to be any time soon.

I don't know where to turn anymore, or what to ask for or where from.

Please help. I'm not sick enough to be sectioned but not well enough to exist.

[skymaid]

certainly sounds hellish. I suffer with agoraphobia myself. I have beaten it once before (for over 20 years).

I used a combination of cbt and exposure which as you say havent been effective for you.

I was actually looking at a recent study of the most effective treatments for anxiety just today.

it had psychotherapy/cbt and pregabalin/gabapetin tied at the top. followed by benzos (with a * for temporary) then a bit of a gap to ssris then snris. then trailling last was alternative/complementary.

its just one study but my point is those pretty much ARE all the options.

Exposure therapy is proven to work. its worked for me before. I keep rushing it this time (not small enough steps and too quickly increasing the difficulty).

cbt isn't much to do with not thinking bad thoughts. we can't control our thoughts directly like that. its more to do with relabelling thoughts and our reactions to them. try a different therapist if they just told you to stop thinkiny negative thoughts.

meditation is far from useless too. as a person who has regularly panic attacks ive been just starting to practice mindful meditation for 10-20 minutes a day for 2 weeks and its improved my sleep, given me some relief from anxiety symptoms (almost as good as a drug a few times) and even prevented a panic attack. Im not so good at using it outside yet but early days

anyway hopefully you will find some of that useful.

[Bonnibelle]

Hi Dom,

Sorry to hear you're struggling. I too have agoraphobia and have beaten it before. Mine started after i was attacked and I had panic disorder. I overcame it but then recently due to chronic ill health it returned.

I have children so I have to go out, it isn't bad enough that I can't take my children to school and I can go out with my hubby and children but still find social events and shops tough alot of the time. Also I can't do appointments so my GP has done home visits if need be this last year, but that's mainly due to my ill health.

I am sorry to say that medication can calm anxiety but for it helping agoraphobia there is little chance that it will so I wouldn't rely on any meds to help. The thing for agoraphobia is exposure therapy, I know you say it made you worse but it really is the only way. You have to face what you fear to ever desensitize to it. It's called habituation. Think of a horror movie, if you had to watch that every single day for 10 days do you think your reaction would be fear as intense as the first time, by the tenth time? It wouldn't be, you'd end up getting an bit bored of it and the fear would subside or at least be less intense.

You have to make a fear hierarchy of the things you fear doing, hardest being at the top of the list and you mark the distress feeling out of 10. Whatever is at the bottom of the list is what you work on first. You don't rush it, if you have to do the easier thing for weeks until you find it easier then move onto the next thing, then that is ok. The easiest thing could still be very hard for you and again that's ok. The lowest on mine was a 6/10 and that's the one I worked on first. I am not at the top of the list yet as they are the 10/10, but it's about starting small and building confidence. Once you see you can do things, even putting the bin out. You could walk half way across the driveway to put the bin out then walk back into the house, you could do that daily for weeks before you eventually were able to put the bin out at the top of the drive for the binman to collect. It's not about how long it takes, it's about the fact you are doing it.

It's the best way to face agoraphobia, avoidance creates more fear so naturally not avoiding will decrease the fear. Expect to feel a lot of fear at the beginning that''s natural after avoiding things for so long. Who wouldn't but it's about feeling those sensations and letting them be there and not stop you. You just have to start with the easier things first otherwise you will go too fast into a tough situation and make yourself worse and set back even further. Noone expects any of us to jump into the hardest challenges first, that's not realistic.

Claire Weekes has a book about agoraphobia which you can buy on Amazon, just search her name and agoraphobia. It's an old book but it's great. Also Robin has CBT for panic which is free online. 2 other great books which helped me and are helping me again are Paul Davids 'At Last a Life' and Barry McDonogue 'Dare'. Both excellent reads, I prefer Pauls book out of the two.

Good luck.

B

[DomRavioli]

certainly sounds hellish. I suffer with agoraphobia myself. I have beaten it once before (for over 20 years).

I used a combination of cbt and exposure which as you say havent been effective for you.

I was actually looking at a recent study of the most effective treatments for anxiety just today.

it had psychotherapy/cbt and pregabalin/gabapetin tied at the top. followed by benzos (with a * for temporary) then a bit of a gap to ssris then snris. then trailling last was alternative/complementary.

its just one study but my point is those pretty much ARE all the options.

Exposure therapy is proven to work. its worked for me before. I keep rushing it this time (not small enough steps and too quickly increasing the difficulty).

cbt isn't much to do with not thinking bad thoughts. we can't control our thoughts directly like that. its more to do with relabelling thoughts and our reactions to them. try a different therapist if they just told you to stop thinkiny negative thoughts.

meditation is far from useless too. as a person who has regularly panic attacks ive been just starting to practice mindful meditation for 10-20 minutes a day for 2 weeks and its improved my sleep, given me some relief from anxiety symptoms (almost as good as a drug a few times) and even prevented a panic attack. Im not so good at using it outside yet but early days

anyway hopefully you will find some of that useful.

Thank you for replying - it's lifted my mood to know I'm not alone or going mad!

I do think I've been doing the exposure too quickly, but I am pressured by so many to "just get better". They think because I walked to the end of the path I am normal again.

I think your suggestion of a new therapist may be the way to go. Too many allergic reactions to meds has left me really disillusioned with them.

---------- Post added at 02:21 ---------- Previous post was at 02:15 ----------

Hi Dom,

Sorry to hear you're struggling. I too have agoraphobia and have beaten it before. Mine started after i was attacked and I had panic disorder. I overcame it but then recently due to chronic ill health it returned.

I have children so I have to go out, it isn't bad enough that I can't take my children to school and I can go out with my hubby and children but still find social events and shops tough alot of the time. Also I can't do appointments so my GP has done home visits if need be this last year, but that's mainly due to my ill health.

I am sorry to say that medication can calm anxiety but for it helping agoraphobia there is little chance that it will so I wouldn't rely on any meds to help. The thing for agoraphobia is exposure therapy, I know you say it made you worse but it really is the only way. You have to face what you fear to ever desensitize to it. It's called habituation. Think of a horror movie, if you had to watch that every single day for 10 days do you think your reaction would be fear as intense as the first time, by the tenth time? It wouldn't be, you'd end up getting an bit bored of it and the fear would subside or at least be less intense.

You have to make a fear hierarchy of the things you fear doing, hardest being at the top of the list and you mark the distress feeling out of 10. Whatever is at the bottom of the list is what you work on first. You don't rush it, if you have to do the easier thing for weeks until you find it easier then move onto the next thing, then that is ok. The easiest thing could still be very hard for you and again that's ok. The lowest on mine was a 6/10 and that's the one I worked on first. I am not at the top of the list yet as they are the 10/10, but it's about starting small and building confidence. Once you see you can do things, even putting the bin out. You could walk half way across the driveway to put the bin out then walk back into the house, you could do that daily for weeks before you eventually were able to put the bin out at the top of the drive for the binman to collect. It's not about how long it takes, it's about the fact you are doing it.

It's the best way to face agoraphobia, avoidance creates more fear so naturally not avoiding will decrease the fear. Expect to feel a lot of fear at the beginning that''s natural after avoiding things for so long. Who wouldn't but it's about feeling those sensations and letting them be there and not stop you. You just have to start with the easier things first otherwise you will go too fast into a tough situation and make yourself worse and set back even further. Noone expects any of us to jump into the hardest challenges first, that's not realistic.

Claire Weekes has a book about agoraphobia which you can buy on Amazon, just search her name and agoraphobia. It's an old book but it's great. Also Robin has CBT for panic which is free online. 2 other great books which helped me and are helping me again are Paul Davids 'At Last a Life' and Barry McDonogue 'Dare'. Both excellent reads, I prefer Pauls book out of the two.

Good luck.

B

Thank you for your reply. It's that first step I fear, that horrible first step where it all happens at once. I've been putting that off for 18 months, and I have no idea where to start getting back on the wagon, let alone how to do it!

You mentioned someone called Robin and online CBT - do you have any more information? My mind can't focus on reading at the moment, just the panic.

Again thank you for your lovely reply. Makes me feel like a human again after losing pretty much everything.

[Bonnibelle]

http://cbt4panic.org/

If this link doesn't work google CBT 4 Panic Robin Hall. He helped me when I was at my worst and made me see it was all anxiety and fear. I see it isn't free anymore on that website, drop me an inbox about it if you like as I am sure there is a free link somewhere that he offered.

I hope that helps. You have to break the cycle, I know I cant take anything in when I am anxious and bogged down with fear but we have to break this and put the work in. Reading this CBT 4 Panic set of workbooks will help. You will feel relief reading it.

B

[dally]

Bonniebelle has excellent advice about exposure therapy. Basso I agree about changing your therapist. Some are better than others. Exposure therapy helped me. Each stage was horrendously scary. But when I look at the simple things I can do now ( walking to the end of my street) when the thought of it would have petrified me...I realise just how far I've come. Exposure therapy does work. Its scary, and some days you will be able to cope with it better than others, but keep trying. It does work