Question:

The person you wrote this to is already using Xanax and considering adding a daily medication. It seems to me that he has made his mind up over whether or not he wishes to use medication. This is his decision which was obviously not made lightly. Telling him that you encourage him not to take medication is like telling him he is making a mistake.

It’s also "like" playing doctor. (Not the fun kind of "playing doctor," either.) I am very pleased that your methods have been successful for you but please understand and accept that we are all different people with different lives and responsibilities. What worked for you may not work for him. There are other people on this group who do not use medications but can still accept that others do.

Well, and these "lifestyle" techniques aren’t enough for "most people," though they may be for some,.and they can help almost anyone, IMHO. It’s good advice, except for the "go off your meds" part. -elizabeth

Response:

A agree with Sheen.  On the right track.  She’s got more experience that I. But it’s true that meds are not as helpful as their "sellers" might have you think.  Take her suggestions (as quoted below), work harder at overcoming and be happier when you do. I am also writing to – Hide quoted text — Show quoted text -encourage you to stay off meds and to beat the PAs yourself.  With hard work and understanding the nature of the beast, it’s possible to get back to your full life again.

Response:

I read your posting with interest, Dr Suess.   I am writing this because my PAs started in much the same way as yours did: with ‘real’ physical symptoms that convinced me I was not long for this earth!  I am also writing to encourage you to stay off meds and to beat the PAs yourself.  With hard work and understanding the nature of the beast, it’s possible to get back to your full life again. I had my first PA 17 years ago when I was 14.  I was on an aeroplane and as we were about to taxi towards the runway, I began to feel very ill and needed to get to the restroom pronto.  I tried to get up to go to the toilet but the stewardess made me sit down and wouldn’t allow me to get up from my seat until we were safely airborn.  The next fifteen minutes were hell.  I didn’t know what was going on as I had been sick before but had never felt such sheer terror or panic and all the usual symptoms of a PA.  I felt trapped by sitting in my window seat with two people next to me who, I felt, were blocking my path to the escape and relief of the restroom.  When I was finally allowed to go to the loo, I was sick as a dog with intestinal cramps and vomiting.  I stayed safely in the restroom for the entire 2 hour flight, afraid to go back to my seat in case I had to be sick again.  When I finally emerged, a lot of the older people around me kept asking me if I was ok which of course caused me huge embarassment.  My mother collected me at the other end and I hugely relieved to be in safe hands again. Following that incident, I began to be wary of aeroplanes (my parents were expatriates and I had to do a lot of long haul travelling), always chosing an aisle seat, closest to the toilets.  Then in my late teens and early twenties I became wary of restaurants, classrooms, buses, trains… always needing to be near an exit. I began to carry those little aeroplane vomit bags everywhere in case I had to throw up in a public place.  I began to only eat foods that caused as little stomach upset as possible – in my case, carrots and apples.  I was so scared of vomiting that I barely ate. When I did go to pubs or restaurants with my friends, I found that I could only grit my teeth and bear it for the first fifteen minutes before having to leave.  I had no idea what was wrong with me and naturally my friends grew very impatient with my behaviour.  I finally went to see a school counsellor at college. I told him I was scared of vomiting in public places – not really realising that what I had was a GAD or PAs.  His response was "what’s the big deal, so you throw up, it’s embarassing, get over it".  That was the end of my seeking professional help.   My PA’s became progressively worse until I could barely sit in college classrooms or leave my little student flat.  I was ruining my own life and it seemed nobody could help me. I began to hate myself.  I would see physically disabled people on the street and think how they should have my body instead of me – my diseased mind didn’t deserve a healthy body when there were other people who could make much more use of it than me.  I just didn’t know what was wrong with me. I finally gave up on living on my own in Canada at college and went to live with my parents in the Middle East.  My mother was shocked at my appearance (gaunt, skinny, skittish) and asked me what was wrong.  As I explained all my symptoms and problems in what can only be described as a meltdown, she realised what was wrong with me.  She explained that they were PAs and that she too had suffered with them as a young mother. She bought me books on the subject and I couldn’t believe that what I had was being experienced by other people all over the world.  I didn’t feel such a freak anymore and began to understand the spiralling nature of PAs.  I began to realise that what was wrong with me wasn’t anything physical and that I was the one with the power to stop it. The point of this message is this: you can recover.  I spent the next year living with my parents in a very safe environment.  During that time, if I went grocery shopping or to a restaurant with my mother and started to get that gritted teeth, can’t move your head, body all tensed up look about me, she would just talk me out of it. Tell me we could leave, tell me it’s just a PA, ask me to tell her a joke or a story – anything to get my mind off myself, stop me from concentrating on my intense body awareness (checking for validation in rapid heartbeat, dizziness etc that this time, yes, I am going to die – this is the real thing here, not just some little old PA). Eventually, I got to the point where I was able to talk myself through the PAs. The next few years were a real struggle with many setbacks but also many victories. The big epiphany for me came with a television documentary in England.  A famous actress (Imogen Stubbs) was being interviewed about GAD and PAs.  She explained how she had visited many specialists and had tried lots of alternative therapies to try and beat her crippling PAs.  In the end, someone suggested she visit a physiotherapist and learn how to breathe again. And she did. The one point she made which has stuck with me since then and has helped me every time I feel a PA coming on is this:   It is impossible to have a full blown PA if you breathe properly.  It is so true. You can’t always control the spiralling thoughts of a PA but you can control your breathing.  The more you grit you teeth, tense up your body and breathe (pant) in shallow, rapid breaths, the worse your PA will become.  I know it’s not always easy to breathe like a yoga master when you’re in the throws of a PA but if you try it and practice it, you will eventually be able to do it. It’s now 17 years later and I still have the odd hint of PAs but I can pretty much always control them.  And so can you.  Maybe your problem with cycling is that you are getting a good workout and you associate your rapid heartbeat and tingling muscles with a PA.  It’s hard to breathe slowly and steadily when your body wants you to breathe quickly to feed your muscles. I play a lot of sport too and when I over exert myself, I too feel a bit anxious about my breathing and other symptoms – only because they are so close to PA symptoms. If I can be bold here for a second please let me suggest a few things: 1.     Breathe deeply and slowly. If you pant or hyperventilate, your PA symptoms will get worse which will only serve to convince you that you are ill, having a PA or, at worst, about to die. 2      tell your close friends or family that you get PAs. There’s nothing like letting other people know that you’re anxious or prone to PAs to disarm the PAs and remove some of their power.  Caution on this one though – some people are more understanding that others.  You soon find out who your friends are. 3.    Try to stay off meds if you can.  Meds will only temporarily relieve your symptoms and not the root cause. The last thing you want is to be dependent on meds AND  the power of PAs. Meds are ok for some people and help them to live a normal life while they take them  but can you really go through the rest of you life taking pills when the answer (for most people) lies in fighting the PAs yourself. 4.    Try not to be a navel gazer.  It seems to me that a lot of people (on the other PA ng) spend an awful lot of time reinforcing each others’ PA by comparing symptoms and meds.  The more you think that PAs are a normal or acceptable part of life, the more it will be ok for you to just go with them, take the meds and try to life your life within the boundaries that the PAs allow you. 5.    A PA is a huge spiral.  It is up to you to either stop the spiral or let it get completely out of control. It takes a lot of practice and you’ll no doubt experience many setbacks along the way.  But eventually, as you experience small victories, you will take encouragement and confidence from them and be able to take the next small step. 6.    Nobody has ever died from a PA and you won’t be the first. I know how dreadful PAs are and how you will feel worthless, helpless and miserable over them. My mother used to tell me that I was self absorbed and to try and think about anything other than myself.  This was a hard truth to accept but by doing so and through practice, breathing and fighting the PAs, I’ve managed to reclaim my life.  You can do it too.  Good luck to you and to everyone else.

Response:

– Hide quoted text — Show quoted text – I read your posting with interest, Dr Suess.   I am writing this because my PAs started in much the same way as yours did: with ‘real’ physical symptoms that convinced me I was not long for this earth!  I am also writing to encourage you to stay off meds and to beat the PAs yourself.  With hard work and understanding the nature of the beast, it’s possible to get back to your full life again. I had my first PA 17 years ago when I was 14.  I was on an aeroplane and as we were about to taxi towards the runway, I began to feel very ill and needed to get to the restroom pronto.  I tried to get up to go to the toilet but the stewardess made me sit down and wouldn’t allow me to get up from my seat until we were safely airborn.  The next fifteen minutes were hell.  I didn’t know what was going on as I had been sick before but had never felt such sheer terror or panic and all the usual symptoms of a PA.  I felt trapped by sitting in my window seat with two people next to me who, I felt, were blocking my path to the escape and relief of the restroom.  When I was finally allowed to go to the loo, I was sick as a dog with intestinal cramps and vomiting.  I stayed safely in the restroom for the entire 2 hour flight, afraid to go back to my seat in case I had to be sick again.  When I finally emerged, a lot of the older people around me kept asking me if I was ok which of course caused me huge embarassment.  My mother collected me at the other end and I hugely relieved to be in safe hands again. Following that incident, I began to be wary of aeroplanes (my parents were expatriates and I had to do a lot of long haul travelling), always chosing an aisle seat, closest to the toilets.  Then in my late teens and early twenties I became wary of restaurants, classrooms, buses, trains… always needing to be near an exit. I began to carry those little aeroplane vomit bags everywhere in case I had to throw up in a public place.  I began to only eat foods that caused as little stomach upset as possible – in my case, carrots and apples.  I was so scared of vomiting that I barely ate. When I did go to pubs or restaurants with my friends, I found that I could only grit my teeth and bear it for the first fifteen minutes before having to leave.  I had no idea what was wrong with me and naturally my friends grew very impatient with my behaviour.  I finally went to see a school counsellor at college. I told him I was scared of vomiting in public places – not really realising that what I had was a GAD or PAs.  His response was "what’s the big deal, so you throw up, it’s embarassing, get over it".  That was the end of my seeking professional help.   My PA’s became progressively worse until I could barely sit in college classrooms or leave my little student flat.  I was ruining my own life and it seemed nobody could help me. I began to hate myself.  I would see physically disabled people on the street and think how they should have my body instead of me – my diseased mind didn’t deserve a healthy body when there were other people who could make much more use of it than me.  I just didn’t know what was wrong with me. I finally gave up on living on my own in Canada at college and went to live with my parents in the Middle East.  My mother was shocked at my appearance (gaunt, skinny, skittish) and asked me what was wrong.  As I explained all my symptoms and problems in what can only be described as a meltdown, she realised what was wrong with me.  She explained that they were PAs and that she too had suffered with them as a young mother. She bought me books on the subject and I couldn’t believe that what I had was being experienced by other people all over the world.  I didn’t feel such a freak anymore and began to understand the spiralling nature of PAs.  I began to realise that what was wrong with me wasn’t anything physical and that I was the one with the power to stop it. The point of this message is this: you can recover.  I spent the next year living with my parents in a very safe environment.  During that time, if I went grocery shopping or to a restaurant with my mother and started to get that gritted teeth, can’t move your head, body all tensed up look about me, she would just talk me out of it. Tell me we could leave, tell me it’s just a PA, ask me to tell her a joke or a story – anything to get my mind off myself, stop me from concentrating on my intense body awareness (checking for validation in rapid heartbeat, dizziness etc that this time, yes, I am going to die – this is the real thing here, not just some little old PA). Eventually, I got to the point where I was able to talk myself through the PAs. The next few years were a real struggle with many setbacks but also many victories. The big epiphany for me came with a television documentary in England.  A famous actress (Imogen Stubbs) was being interviewed about GAD and PAs.  She explained how she had visited many specialists and had tried lots of alternative therapies to try and beat her crippling PAs.  In the end, someone suggested she visit a physiotherapist and learn how to breathe again. And she did. The one point she made which has stuck with me since then and has helped me every time I feel a PA coming on is this:   It is impossible to have a full blown PA if you breathe properly.  It is so true. You can’t always control the spiralling thoughts of a PA but you can control your breathing.  The more you grit you teeth, tense up your body and breathe (pant) in shallow, rapid breaths, the worse your PA will become.  I know it’s not always easy to breathe like a yoga master when you’re in the throws of a PA but if you try it and practice it, you will eventually be able to do it. It’s now 17 years later and I still have the odd hint of PAs but I can pretty much always control them.  And so can you.  Maybe your problem with cycling is that you are getting a good workout and you associate your rapid heartbeat and tingling muscles with a PA.  It’s hard to breathe slowly and steadily when your body wants you to breathe quickly to feed your muscles. I play a lot of sport too and when I over exert myself, I too feel a bit anxious about my breathing and other symptoms – only because they are so close to PA symptoms. If I can be bold here for a second please let me suggest a few things: 1.     Breathe deeply and slowly. If you pant or hyperventilate, your PA symptoms will get worse which will only serve to convince you that you are ill, having a PA or, at worst, about to die. 2      tell your close friends or family that you get PAs. There’s nothing like letting other people know that you’re anxious or prone to PAs to disarm the PAs and remove some of their power.  Caution on this one though – some people are more understanding that others.  You soon find out who your friends are. 3.    Try to stay off meds if you can.  Meds will only temporarily relieve your symptoms and not the root cause. The last thing you want is to be dependent on meds AND  the power of PAs. Meds are ok for some people and help them to live a normal life while they take them  but can you really go through the rest of you life taking pills when the answer (for most people) lies in fighting the PAs yourself. 4.    Try not to be a navel gazer.  It seems to me that a lot of people (on the other PA ng) spend an awful lot of time reinforcing each others’ PA by comparing symptoms and meds.  The more you think that PAs are a normal or acceptable part of life, the more it will be ok for you to just go with them, take the meds and try to life your life within the boundaries that the PAs allow you. 5.    A PA is a huge spiral.  It is up to you to either stop the spiral or let it get completely out of control. It takes a lot of practice and you’ll no doubt experience many setbacks along the way.  But eventually, as you experience small victories, you will take encouragement and confidence from them and be able to take the next small step. 6.    Nobody has ever died from a PA and you won’t be the first. I know how dreadful PAs are and how you will feel worthless, helpless and miserable over them. My mother used to tell me that I was self absorbed and to try and think about anything other than myself.  This was a hard truth to accept but by doing so and through practice, breathing and fighting the PAs, I’ve managed to reclaim my life.  You can do it too.  Good luck to you and to everyone else.

The person you wrote this to is already using Xanax and considering adding a daily medication. It seems to me that he has made his mind up over whether or not he wishes to use medication. This is his decision which was obviously not made lightly. Telling him that you encourage him not to take medication is like telling him he is making a mistake. I am very pleased that your methods have been successful for you but please understand and accept that we are all different people with different lives and responsibilities. What worked for you may not work for him. There are other people on this group who do not use medications but can still accept that others do. Wishing you continued success in your fight against PD. Charley

Response:

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