Agoraphobia:

[LindaJoy]

Hi, everyone,

Well, I've gone from PTSD to agoraphobia. I read many of the posts here that mention agoraphobia, but none really go too much into depth with it.

If you don't mind sharing, have any of you developed this disorder? How did you handle it? I'm supposed to be starting in a new program at University Hospitals in Cleveland for my POTS, and I see a psychologist as part of the program, so I'm certainly going to talk with her about my anxiety of leaving my home alone for fear of having an episode and not being able to get to help in time, or fear of making a food of myself. (In this program, I also see a neurologist and cardiologist. I'm hoping a gastro will be thrown in there for good measure at some point.)

Anyway, if you would like to PM me, please feel free. I'd like to learn more about this disorder and how I can help myself.

Thanks.

Lindajoy

[MightyMouse]

Linda, there's a difference between a phobia and a real fear. Having POTS can result in a fear based in reality: that you might become ill away from home and become unconscious among strangers. That's not a phobia--which is usually a fear based on things that aren't usually based in fact. I'm not saying that you don't have a phobia either--just that a fear of leaving home alone when you have a chronic illness doesn't necessarily equate to a phobia.

Nina

[LindaJoy]

Well, I was being vague, probably too vague. It's embarrassing, really, but I have been diagnosed with agoraphobia. I will not leave my home unless I'm following or leading my husband to and from his work, then I go sit in our hospital parking lot for hours and hours, until he's done with work, even if this means sleeping in the van overnight. It's to feel safe. I will not be at home alone, and I haven't been for over a year, I think. I won't even be in the house alone with anyone else but my husband, my "safe" person. I will only go and do things if my husband is along, as he's the one I see as getting me help if I need it. As you all know by now, I notice every body tic and change. I go beyond fear, trust me. I'm way over the edge. When I was told, I just cried and cried. I cannot believe I've become this way. I used to be so independent, so outgoing. Now I'm terrified of being alone, of being out, of every little body twitch. Don't get me wrong, having this terrible condition has taken its toll, and understandably, but it's still so awful to try and deal with this. I'm hoping this psychologist in Cleveland can help.

Lindajoy

[JenniferInOhio]

LindaJoy - I hope the psychologist can help. This condition, I think, has many fearful of being alone. I hope you can overcome your fear. Please let us know how your appt. goes.

[morgan617]

I agree with Nina, I don't find it unreasonable to be hesitant or fearful of leaving the house, when you know you could get sick and no one would know what to do. It's kind of the reality of our situations.

I always get stressed when leaving, even though i am never alone, because i can't drive and have to use a wheelchair. So even though someone is with me, i still get fearful something might happen. I don't think of it as a phobia at all. Also not saying you can't have one, just that there is a difference.

I just make sure i have all the little things i need. this is where medic alert bracelets or necklaces come in handy and stuff. Sometimes just the stress of going somewhere can affect me, so i might take an extra dose of preventative med or something. whatever gets you out there. And sometimes, I just decide it's not worth the stress. The next time, I buck up and do it.

Learning how to prepare for an episode, or doing something that might help prevent them goes a long way to help overcome or at least helps you cope with the anxiety of the 'what ifs". Therapy is always a plus in this too....morgan

Just read your post...so sorry sweetie you have this much emotional pain. Agoraphobia can be improved. How does your husband feel about this? Is he supportive in a way that helps or makes you even more dependent? I'm sure if he didn't allow this, you would feel very betrayed, but that wouldn't be the case. I would recommend that he join you in therapy so he can also help you overcome this disabling affliction. hugs...morgan

[MightyMouse]

Sucessful treatment of phobias often involves a combo of medication and therapy; but I want you to know that you CAN improve. I'm sure being ill has provoked a worsening of things for you if you were already prone to such issues. It must be hard to feel real fear sensations about both your body's issues AND being able to leave home. I hope that you're psychological consult helps and allows you some more freedom to go and do things without your husband, as well as freedom from worrying about your health while you're home.

Nina

[Becca_7706]

Linda,

I developed Agorophobia directly related to my condition about this time last year. It was due to having collapsed in a road when I was alone on a street and no-one helped me (it wasn't the first time it had happened but this time really scared me). I was terrified of going anywhere. It had been developing anyway I think because I had a flashback on a bus a few months beforehand and had to phone a friend to help (the bus driver apparently kicked me off his bus and bearing in mind I live in an isolated part of Wales that is no joke) who wasn't able to come for a long time.

There are many books on agrophobia though I must admit I didn't find them helpful. They are generally based on CBT and the fact that your fear is not going to happen which of course is untrue in this disorder (I'm referring to both PTSD and syncope here). The therapy I had for it was useless because it was based on me never fainting again (when I did faint I was blamed for letting it happen) and the medication they gave me made my syncope worse therefore making the agorphobia worse as well.

Still there?

That's the negative part of my experience over Right this is what helped me (I considered PMing the info but someone else might find it useful who reads your thread). I'm sure this is what your psychologist will suggest to you.

First it isn't based on things never ever happening again - you need to be realistic here, hiding behind 'it won't ever happen again' will make things worse when it does. Second what exactly is difficult for you right now? Write an entire list. Third buy a notebook

Fourth decide what is the smallest step you can take might be to the front door or to your garden gate alone (it is important it is small and achieveable) Fifth RECORD what you have done in the notebook. Sixth repeat steps four and five doing something that is more than before but not too big an increase - slowly regain your condfidence. There will be days when you can't go beyond what you have done before choose something you done and do that because then you have done _something_ and record it.

REMEMBER: You will have set backs but by recording exactly what you do and when and how you will gradually gain confidence again. It is important to record the postives of doing it acknowledge in your mind if you got panicky or if an episode occured but keep the notebook for positives. When I was told to do something similar by a therapist I was told to write down everything that I felt and had happened but I found myself concentrating on the negatives only then by forcing myself to look at the positives and simply acknowledging the negatives I found it more helpful.

I did this when leaving the house and using public transport again (something I have to rely on) and it really helped me. I have literally filled several notebooks to prove that it happens less than I had come to think (I was thinking it would happen every time I left the house). Two other things helped me one was helping someone who had a seizure one day - I realised that if I could help someone who was in trouble there was no reason whatsoever to assume someone else would also help me when in trouble the other was creating a postives scrapbook which was essentially a scrapbook of every single thing I had achieved from learning to use the toilet via qualifications, coping when I was first diagnosed, undertaking physio etc etc - everything is in there whilst it means little to anyone else it really really boosts me to see what I have achieved that is positive in my life so do try that as well.

Gosh what a long post! You can PM me if you like. I have been where you are and definitely appreciaite what you are going through. I hope you are able to get these suggestions working for you too. I did them out of desperation because nothing else worked for me. I hope they help you too and I would have found having someone to talk to who had been in the same situation really really helpful at the time.

Becca

EDITED to Improve English in step Six

[ladyt]

Hi..

I am so sorry u are feeling this way.. it must be awfull.. I had a friend whit similar problem, whit time, help and confronting the issues she fully recoverd.. it was not done in a day.. she learned how to deal whit it by terapi (focust on solution and problem solving) And finding ways to safely push here self..

I do hope u gett the help and suport u need in this situation..

casper

[doctorguest]

Linda,

I want to reinforce the fact that you CAN recover from this condition. At this point, it would have to involve a combination of medications that reduce anxiety and cognitive behavioral therapy as well as supportive therapy for you and your husband. I also want to point out, without offending you or others, that agoraphobia is almost always accompanied by a panic disorder, and both can result in substantial disability and impairment in quality of life, sometimes more than a medical condition.

As Nina and others pointed out, one 'should' logically make a distinction between unfounded fears of a "healthy person" being afraid to, for example, have a seizure and an epileptic being afraid of the same thing. However, I can tell you that psychiatrists and psychologists DO NOT make this distinction and both cases get a diagnosis of phobia, with the distinction that a person with epilepsy would also appropriately receive a mention of the epilepsy in the "diagnosis/impression" section.

In terms of relationship with POTS, clearly one can have both conditions - POTS and panic disorder with agoraphobia, as these are not mutually exclusive. The difficulty comes when assessing what symptoms/disability results from POTS and what results from a panic disorder. Some people have minimal POTS symptoms, yet may be more impaired than those with severe POTS because of the co-morbid panic disorder.

Regardless, panic disorder/agoraphobia is a treatable condition and should always be treated when present. Linda, I suspect that if your panic disorder is treated, you will improve significantly in your other conditions and regain a much more functional life, but be prepared to invest time, effort and energy to work on your fears. I hope you are able to find supportive and compassionate physicians and psychologists who can guide you through this process. Good luck!

[morgan617]

As always, well said doctorguest!

Linda, my son has panic disorder and this has caused some problems with agoraphobia, just not as severe as yours. He had resisted treatment for quite awhile, but is now fully invested in both meds and psych treatment. He has found an excellent therapist, which can make all the difference.

His is due, in large part, to his physical problems, they will never go away and his health problems are progressive, he will not go into any remissions and will never get better, only worse, and will always have restrictions. But through therapy and meds, he has actually improved a lot on the emotional end of this, as opposed to getting worse, as his body does.

So I absolutley KNOW that these things can get much better, but they must be treated, like any illness. His dad and I plan on going with him to family therapy to help us all cope with illnesses and learn how to not feed into his fears. We want to protect him and sometimes make poor choices out of a misguided sense of love or "doing whatever helps" him cope. We need to learn how to help him, even though it may be difficult. I think your husband needs this type of guidence also. Nothing is more painful than watching someone you love suffer, but we can't allow that to make it worse, by co dependence.

Doctorguest is correct, this is a lot of work, and it takes perseverence, but every every small positive step feels like a huge victory. Good luck sweetie.

(btw DG, using syncope and paralysis interchangeably got an appointment cancellation for me with an expert in the field, so I'm glad you mentioned that) morgan

[Sophia3]

Linda

Ever heard of Exposure Therapy? It's very successful and is mentioned on this link.

http://www.medicinenet.com/agoraphobia/page3.htm

Years ago I dated a man, now in his late 60's who had agorophobia. at one point he could not leave his house. Then he could not leave the village where he lived. Then he could travel the township. When I met him, he could do part of the city I lived in.

I read about phobias but had not stumbled onto the term Exposure Therapy but ENCOURAGED my friend to PUT HIMSELF in a situation when he KNEW he would panic. and by doing it frequently, it would help him make progress. This was common sense to me. As he practiced his driving I could read him..he would get quiet and fidget..then when panic would strike, he we were at a traffic light he would grab my arm and start saying prayers or quoting Bible versus out loud. I would stay quiet as long as HE TALKEd as talking to calm him down only helped at a certain point. I had many sore forearms from this therapy but had the blessing of a therapist.

We finally got him to drive to his adult sons house and see his grandkids living environment. His family was THRILLED. BUt the KEY to success with this therapy is BEING CONSISTENT. Once he knew he had done it, he wanted to try again. Somedays he made it,other times would have to turn around.

he will NOt ride in a car with somebody else driving so doping him up a lot on meds to calm down was not an option. He could take a low dose of xanax though and never drank caffeine. Some therapists will travel with a pt to the tops of buildings or across bridges. Meds, homework between therapist visits and distraction therapy help as well.

We broke up and though I am still friends with him, sadly his agorophobia has gotten worse. He has a job at a business close to where he lives and 15 minutes from where I live now. A city away. A year ago, he could EASILY drive here but 'got out of the habit' and UNKNOWINGLY fed his insulated world again.

Now granted, he has suffered from this since he was in his 20's and is now 67. So for DECADES he was surrounded by well meaning enablers. To show the creativity of a home bound agoraphobe, he had a GOOD FRIEND impersonate him in the 70's to go to a doctor to get tranquilizers!! Well, that is illegal but shows was enablers and co dependents can do.

I was simply a temporary inspiration to him to BROADEN his horizons. It's too bad he hasn't kept it up as his one son has moved further away.

Oh, at one point he FORCED himself to drive by taking a job at a pizza store AND driving to deliver pizzas. That was good for him.

So I say this to say it CAN BE DONE but must be done regularly to keep the panic controllable, so to speak.

Also for HIS case, driving at NIGHT helped as it was less stimulation to his brain and less likely to cause a panic. For me this was bad, as I had horrible night blindness but we somehow made it work.

Exposure therapy was later discoverd when I read some books about this condition. Also seeing a therapist, you can TALK forever but taking ACTION to repeatedly put yourself in a situation to INDUCE a panic is a good way to make FAST progress.

Of course, if you faint yoU ALWAYS WANT somebody with you at all times.

I wasn't going to respond to this thread at first but when I now only speak to my friend on the phone due to my not driving that much, I felt compelled to add my two cents after speaking to my friend yesterday.

Also, he found getting into HOBBIES to keep his mind busy helped.

I wish you the best as I do not know HOW LONG you have had this but it can be HELPED with perserverance!!!!(sp)

Best to you.

[Sophia3]

P.S. Linda

MORE IMPORTANTLY TODAY, he STOPPED seeing his therapist as he could NO LONGER drive to see her, after we broke up. He found another guy but the psychiatrist retired soon after a couple visits. HE CHOSE to stop therapy. That was a bad idea, though he 'worked on himself' for another couple years.

The pizza manager and helping deliver pizza's helped. But the man is now 67 and after decades of living in a very tiny world, has no motivation to get better. His girlfriend of many years does not even bring it up???? Even though she goes out of state to visit family. Can you say denial? She pretends he has no problems. When his mother died YEARS ago in a nursing home, he could NOT even go to see her.

Oh, and his agoraphobia started when he was in the NAVY..he got very homesick and once he was home, it was tough for him to leave his city but he did for a couple of years...then the excuses started and a family that did not know what to do, and or CHOSE to allow him to be semi homebound.

[dawn]

Linda,

Don't be embarrassed. I had agoraphobia for years. I started by just practicing driving out of my driveway. When my husband left for work I would freak out.

I have recovered. I still get anxious when I leave home but have learned tools to help me. I would highly recommend that you get anything by Claire Weekes that you can find. She is deceased, but wrote the best books and even has a CD that I purchased last year. My psychologist recommended her books to me.

I did a couple years of exposure therapy also.

I am living proof that you can get over this. You can do it.

Check on Amazon and Half.com on ebay for the books. They are hard to find. But I can't tell you how much they helped me.

Dawn

[Sophia3]

Though I am not a follower of her tv shows, the popular southern cook Paula Deen had agoraphobia years ago and now look at her!! Own show on Food Network and lots of cookbooks. This site explains how she catered food and had her SONS deliver it.

It all starts with baby steps.

http://panicdisorder.about.com/od/famouspe...p/pauladeen.htm

[calypso]

LindaJoy,

So sorry you are feeling like this. I suffered from agoraphobia when I first started having panic attacks, about 14 years ago. I had just left home for college and was having the attacks all over campus. I couldn't go to class or leave my dorm except for when my sister and parents came to see what was going on with me. I ended up working with a phobias therapist, who would make me meet her out in public places for sessions. We went to a different place every time we met -- out to lunch, to a class, even to church. It was totally strange but really helped. She was truly amazing.

I really hope you are able to work through your fears. We are not always going to be a place where someone is going to know about POTS and be able to help us. There are times when your husband might need to be away. It is best to try and face these fears so you can live the way you want to live -- at least mentally; POTS can obviously take over physically.

Best to you.

Amy

[LindaJoy]

Hi, everyone, and thank you for your compassion. I truly appreciate you sharing your stories. I don't feel so alone. I'm holding my own right now, but still doing the same "safe" behaviors. I haven't been on in awhile, to tell you all thank you. I've been being worked up for hypereosinophilic syndrome, which is fatal (thank God I don't have it) and churg strauss (which I don't know yet--see a specialist in three weeks).

Did have some fun today--decorated for Halloween. We go all out, with tons of lights and pumpkins outside, as well as inside. I'm blessed to have married a man who likes Halloween as much as I do.

Gentle hugs to you all,

Lindajoy

[Mrs. Burschman]

Linda,

I'm glad to read that you're doing OK!

When I tried to taper off of my Paxil, I not only got really sick POTS-wise (hands and feet tingling constantly, heart rates upon standing sometimes more than 160, blacking out walking up stairs, unable to eat, severe diarrhea, etc., etc.), my anxiety became overwhelming. I didn't exactly become agorophobic, because I didn't HAVE a "safe place." It didn't matter where I was. I was having symptoms like a panic attack, but unlike a panic attack, it didn't go away. Some days, it lasted all day. I was absolutely certain that the guys in white coats were going to take me away to Yankton (my state's mental hospital.) Or at the very least, I'd have to live in some sort of group home for crazy people.

Well, I'm not in Yankton, nor am I in a group home. I am back on the Paxil (needless to say.) All of the physical sympoms have either disappeared or improved.

I wish I could say the anxiety is completely gone. I'm working on that. Some days, I feel completely normal. Others, I'm still scared. I think it might take a while to get over the fear, which is very frustrating. I want to feel good with less effort!

I guess I just wanted to share my story so that you would know that it is possible to feel better. In my case, I don't know how much is psychological and how much is because of the POTS. But because the Paxil is used for both, I guess maybe it doesn't matter. I'm also seeing a counselor who's working on cognitive-behavioral therapy (mostly teaching me to stop telling myself that I'm a nut case.)

There is help!

Amy