Hi, just wondered if anyone else feels like me...
Over the last few months I have found it very difficult/scary to travel far from my flat. It feels like the only place where I feel "normal" and ok is in my flat (but sometimes v weird there too of course - but more cope-able with there). Perhaps 'cos my brain has home all mapped out I feel more comfortable there - I don't know.
It's strange because when the dizziness was really bad I could travel places without much fear as a passenger in the car and wasn't so disorientated (although I worried about the direction of things even more than I do now)but now the dizziness is getting better this "feeling weird" seems to have worsened.
I realised that althought I had discussed the feeling anxious and stuff on here I'd never actually mentioned this sort of feeling weird the further away from home I get.
Last edited by Katkin; 01-13-2005 at 04:49 AM.
The following user gives a hug of support to Katkin: xzaviorkain (12-18-2011)
I think your phobia is just a manifestation of the anxiety that came with this nightmare. Don't let the agoraphobia become entrenched because of this illness...you have to just force yourself into new environments until you feel ok in them again. It's hard and uncomfortable but has to be done.....and after a while going out won't be an issue anymore. I was all freaked out about getting on buses at one stage but went on it anyway until I got over it and the feelings did go.
I'm experiencing the same difficulty. I have never felt anxious about travelling before. I was always an independent traveller until the "dizzies" hit. I've been trying to desensitize myself because I fear that I'll become agoraphobic.
I live in the outer boroughs of New York City. Once a week, on my own, I board a commuter train to take me into the City. The sole purpose is to expose myself to a very busy train station and crowds. It's not easy. I've been doing this for six weeks now. The first time was a disaster. Although, there has been improvement from the first time I tried this, I still have a sense of anxiety each time. I try to ignore it as best as I can.
I'm way more afraid of being house bound. I think you have no choice but to get out and fight what you're feeling. Easier said than done....I know.
Wow - ironically the most scary place I always imagine is going to New York.
I always think "Oooh I'll never be able to do anything like travel and go to NYC."
(I live in England). Even a trip to the hospital which is about an hour or so away is terrifying to me. Well this week even going to college 15 minutes away was a huge ordeal.
Good God - I think you are incredibly brave!! I think it's amazing what you've been doing. Wow. Well DONE!
I was going through a stage where I was taking brave little steps and going for walks -further and further each day, and doing "scarier" things. I feel have gone backwards though.
This week on my 1st day back to college I got the taxi driver to turn round and come back home 'cos I felt so weird and out of it. *sigh*
So I decided to take this week off college and try and sort my sleeping/eating pattern etc and go back feeling a bit better next week.
Despite feeling this crap I have still been going to work and college.
It's been very very very very difficult but I've been doing it.
I just HATE the feeling that I'm not in control. Like the further away from home I am the less I can think straight. And everything feels surreal/foggy.
If I didn't feel odd - I wouldn't feel anxious, STUPID illness.
It's not like panic attack type of anxious in that stomach acid way - it's more because I feel "out of it" like on drugs or something, I then feel really really uncomfortable and unhappy with feeling so odd and then that makes me feel scared and upset.
I don't think we're agorophobic as such but I mean, ...meh what DO I mean? Hehe.
With this kind of illness feeling bad due to a lot of visual stimulation - e.g. huge city and loads of people - is prevalent. SO we'r bound to feel bad outside....
I cannot begin to imagine how you cope with going into the city on your own like that.
It is AMAZING. I am extremely impressed, go you!!! - Well done!!!!
Keep up the good work...!!
I was literally housebound for a few months (to include no driving) due to the same issues. At the time, this was BEFORE I found the Healthboards, and no-one diagnosed my anxiety to correlate with my vertiginous symptoms. I was a-l-o-n-e.
I can best describe it as a snail. I would poke my head out, the wind would blow, and my head would go back inside my sheel for HOURS until I felt calmer enough to try again. I was a snail for a LONG time.
Now that I am able to deal with my symptoms on a less anxious state, I venture out and make myself do the things that instill fear or may bother my symptoms. It isn't easy, especially when my symptoms are increased.
I am left with fearful thoughts or anxiousness about doing things, driving, and being alone. But I am no longer housebound, and flew to Las Vegas this past May for a glorious week's vacation, and I continue to push myself and do many things that I stopped doing for a while during the worst of my symptoms. I still will decline a movie or mall shopping (for examples) on a day when I know my symptoms are bothering me, but I have done both on better days. On good days there is NO stopping me.
Last edited by Wowwwweeee; 01-13-2005 at 01:09 PM.
When everytime you go out the house you feel yucky, it's no wonder that after a period of time you start to fear going out - which is not quite the same as agrophobia. Unfortunately this can build up over time. When I was first dizzy, after a few weeks I felt pretty much ok in the house but as soon as I walked more than a few hundred yards the world turned into a horrible mess, and I would have to turn around and head home as quick as I could - after a few months of this, even the thought of going out the house made me a nervous wreck - luckily I percevered and overtime it became easier.
One of my coping strategies to stop the anxiety(while at home) was always telling myself that I could always just go and lie down if things got too bad - when I was out and about I couldn't do that (the CBT man I saw a s few years later had a name for this.. but I've forgotten) which mean't it added an extra level of insecurity. I mentioned this to my doctors at the time but they started to claim it was agrophobia and that was my problem all along. Luckily, I found that I was able to go for walks in the local woods without anxiety becoming too much of an issue, but one day it was particularly windy and the trees were blowing around and amazingly the extra motion in the visual field brought on the same sickning sensations and the anxiety really kicked in, it made me realise that this was a mostly a physical phenomina, and gave me a example to argue my case the medical professionals.
I did however continue to view my house as "safe", so even when I went out and about I knew that once I got home I was "safe". After several months I was forced to move house (by our evil landlandy!!) which mean't my "safe" place was no longer there. This led to what I can only describe as a mental breakdown.
You are right in thinking the because you are used to your flat/house then you have a mental/subconcious map of how everything it layed out. Also you have got used to the level of visual stimulation in the home, so it follows that you should be able to get used to the changing visual stimulus in the "outside world" - it will just take a while, but your doing the right thing. Though it is important not to totally overdo it, as too much visual stimulation would be counterproductive, you need to build up, I found going around shopping centers early in the morning is good because they are quiet (I went nearly everyday), over time I went later and later (I added 30 minutes a week) until I was going at 12 and facing the crowds full on. Apparently a good indicator as to whether your overdoing it how long the symptoms take to subside, if they take anymore than a few hours then your overdoing it.
That's brilliant to know - I'm so pleased you're getting on with your life.
Aww you poor thing - you were all alone.
I'm so glad we've found these boards as the people here seem to be the only people that TRULY understand. I really thought I was a freak until I found this board!
Omg how did you manage to go on holiday??? Amazing!!
I'm so scared that I wouldn't be able to think straight and wouldn't feel like I was myself and that I would feel out of my mind until I got home.
Such a nasty terrifying thought and feeling. *sigh*
I must say Ive been lucky in that I have never experienced this throughout my 2 yrs with these symptoms - I think everyone is different but from day 1 I have made myself do stuff and I continued for 9 mths doing a course which was 8-6pm, whilst still incredibly dizzy.
The only thing I do find is if I go away somewhere (which I do frequently - but im talking a good 4 hrs by train) I can get my anxiety and weird breathing back without me even thinking about it as subconsciously I must be worried about doing something new - how will I cope etc.
BUT and heres the BUT - what you describe is sooooooooo very common for people with inner ear stuff - so I would not worry at all! The main thing is to recognise it and try not to let the feelings win - ie: go out every day and make sure you do not become more and more isolated in your flat. Take small steps but make sure you take them.
Bennygibb and CL:
THANK YOU soo much!!!
You have really made me feel a lot better.
Thank you for taking the time to explain so well and to reassure me.
Thats very kind.
I'm so glad you didn't settle for the diagnosis of "agoraphobia" Benny
Thank you - I really DO feel a bit less of a freak now and a bit more encouraged to carry on with the Battle.
I think you're both incredibly brave and strong.
Thank you for being there
I will carry on with my small steps. I was doing so well until I had that episode on the beach couple of months ago and it's all gone downhill since then
Ah well - the show must go on!!
*climbs back onto the slippery slope*
We WILL win and be better, happier people because of this!
Excellent post. I can completely relate to "home" being the safe place. Still deal with that issue of home being the safest place on some levels.
I figured that if I was going to have to deal with these symptoms, then I was going to try flying. I went with people that I felt comfortable with and knew that if I did experience symptoms to the point of spinning, that I would be surrounded by people who cared about me and knew about my issue.
I was only nervous about the flight and the "what if I get dizzier" worry.
The flight there was an unpleasant adventure, but I did get through it although I'm surprised that I didn't drop dead from the anxiety alone <smiling here>. And in Las Vegas, EVERYTHING moves, so it was either moving sidewalks, escalators, elevators....I just made up my mind to grin and bear it when I had to, and as the week went on, try to test myself by taking something moving if I didn't have to. I actually wasn't any worse for wear, and when I got home, my symptoms were only elevated slightly with a gentle tilting/swaying upwards feeling for about four days. I have NO desire to ever fly again, but I would.
I remember the afternoon before I was to fly back home, I was in the restroom of this incredibly beautiful casino, and I had a panic attack as I remembered that I had to fly the next day. I STILL shudder inwardly when I think about how I felt when I was flying. Ick. Believe it or not, I now have dreams about having to fly, and I wake uo remembering those feelings.
Sometimes I just get angry and say to myself, "okay, if my symptoms are going to get worse, then so be it - I'm going to (this)". Anger sometimes gets me far.
The symptoms are horrible, but sometimes it's the anxiety symptoms and thoughts that are the worst. They get a grip on you and it's difficult not to continue anxious behaviors, have those worried thoughts, and give in to the fear.
But I try to enjoy the most of whatever it is I am doing, even when I have symptoms, because it's the only day I have to enjoy - that moment.
I remember one afternoon that my symptoms were so bad that all I could do was sit in a chair and be still. But......I also remember taking the moment in to listen to the birds and feel the sunshine on my legs, and that made me smile. I always try to find something to be thankful for, even during my darkest moments.
"But I try to enjoy the most of whatever it is I am doing, even when I have symptoms, because it's the only day I have to enjoy - that moment.
I remember one afternoon that my symptoms were so bad that all I could do was sit in a chair and be still. But......I also remember taking the moment in to listen to the birds and feel the sunshine on my legs, and that made me smile. I always try to find something to be thankful for, even during my darkest moments."
*tears in eyes* you poor thing - I just want to give you a huge hug
Good positive outlook though.
Will reply to other bits of your post tomorrow - have to go to bed.
Katkin x x x
What an inspirational thread!!! I can relate and agree with all that has been said.
I felt agoraphobic when I had Panic Disorder. It was horrible. I would go out and have Panic Attacks, took a while to get over so I was very upset when it all came back for vestibular reasons.
The feelings you describe are exactly how I have felt in new places a few weeks ago, even new "safe" places. When I made the trip from SF to England thatwas scary and the whole time I was in England I kept having to adjust and the truth is it was darn uncomfortable. I felt like I had taken 3 massive bong hits and shooted down some rabbit hole. And I did have a Panic Attack in Manchester airport, but what I tell myself is that is the worse that can happen. Your body will pass you out if it gets to be to much and then you'll be out of the misery.
Anyway, you just have to keep pushing. What I have learnt that helps me is ALL, truly, ALL feelings and thoughts pass. they may reappear but they pass, it may take 1 week, 1 day, 1 hour, 1 year BUT they all pass, change is consistent. Even when I feel stoned, music helps, lavender oil, I find things that can lift me away for even a moment.
I went to lunch with a friend yesterday and his head was moving left and right, left and right and I wanted to scream please that is driving me mad (only someone with a vestibular problem can understand that, with my other anxity issues that would not have bothered me). I kept concentrating on his face, and it passed and he kept bobbing his head.
Things that help me:
RESCUE REMEDY or KAVAKAVA in purse at all times
Book that is inspirational
Thinking of this board
Take it all with me out and know these are my tools, as well as my breathing and feeling my feet and I can get myself threw anything!! Some days easier sadi then done and some days not a problem, but eventually it will shift cause your brain wants you to be safe, your spirit wants you to enjoy.
Any place you can walk out of, you have a choice.
It's hard. But I hear in your posts to everyone how loving and supportive you are, apply all that love to yourself and your fine. We will overcome the vestibular monster.
...My wife developed a anxiety/panic disorder a couple of years ago and she started experiancing what your describing. Not the normal anxiety but that "weird" feeling. Many times she would grab my arm and say let's go home and then we would get home she would be ok again.
...We started a process of trying to identify triggers which was a difficult process but I read a study on underbreathing that seemed to fit her pretty well. It seems that people with inner ear disorders and anxiety disorders have a very high threshold to CO2. Levels of carbon dioxide that aren't high enough to be of any concern will trigger dizziness and/or panic liek attacks. I seen her have a full blown panic attack and these weren't anywhere close, it was like you described.
...It seems that we all have a threshold alarm that tells us we're suffocating. For normal people the level of CO2 has to go rather high to trigger the alarm but for those of us with this problem the threshold is a lot lower.
...What I found out by observation was that my wife holds her breath when she is in stressfull situations. Basically she underbreathes and as the O2 drops and the CO2 rises. This could explain why your symptoms are so repeatable when you leave your home. In cases where it resulted in a panic atack was when she would then hyperventilate. In case your going to research this, underbreathing causes acidosis and hyperventilation causes alkalosis. I also have to watch out for poorly ventilated areas and big crowds in close quarters.
...This may not help at all, but it's a hard trigger to identify and too much information is better than not enough.