12-18 month support

[[dr...]]

Another day in the books all. 

[[...]]

 

 

I am in such a wave now, I have been feeling awful for two, three days. But what worried me, was having depression, negativity and paranoia back in my life.

 

Well, back from acute. Paranoia is awful and mine is mild, I can't imagine the real thing. I have the malevolent feeling again, remember the one Sue  described so accurately ?

 

My vibrations are stronger than uusal and my heart is beating quite fast.

 

Mr Sky knew something was wrong when I didn't start banging on about going out for our evening bike ride !

 

And I am so lucky depression has not been my dominant symptom. I fear health fears, depression and exhaustion.

 

So, I have been quite lucky to not have had them as badly as you guys have.

 

When things are bad, I try to run a list of what things are good. sometimes it works, other times it doesn't, my brain just has to go to dark places.

 

And I am slower minded as well. Hard to imagine being any slower minded than I already was, but there you are .

 

 

Sorry to hear sky

I'm on day 7 of on off cycling depression. I guess it's a so called wave. Depression has played a big part of this horrendous recovery and it's by far the sx most despised and feared. Even though I never had had it until I came off the drug.

 

Depression had tapered down from every other day to once or twice a week, the return of it this far out for consecutive days, is quite disturbing. As far as I'm concerned ,The psych crap at this stage of the game is tough business. 

 

Feel better soon

 

Here's an interesting article for all :

 

http://www.huffingtonpost.com/van-winkles/the-daily-nightmare-of-be_b_7866700.html

[[No...]]

Sky ... sorry to hear you are in such a hard place right now ... please be assured that this will shift ...

 

I have been in a rough place these past few days and things seem to be lifting again ... this constant up and down is difficult and we know how to do this ...

 

Know you are loved and we care about you ... as you care and love us ... 

[[No...]]

Jrod ... yes ... the return or the emergence of this tough stuff at this stage is confusing ... and we get through it, just like all the other times ...

 

Our resilience is endless ... one day at a time ... 

[[No...]]

Coop ... that was a wonderful update ... hope you can rest on your laurels for a bit and let this good time soak in and be a joyous moment of healing for you ...

 

We need these new memories ... they can become a portion of our self-support going forward ... 

[[No...]]

Good Morning ... had my consult with our version of Community Mental Health yesterday afternoon ...

 

The best I can say about the "consult" is that I received a disturbing confirmation of the "politics of mental health" in our community ...

 

I went to the consult to see how things have changed in our community over the past five years ... and carried the hope that there may be some small seed that is beginning to germinate, some small shift in awareness ...

 

What I would found is deeper entrenchment of fiefdoms and the blatant espousal of a new version of the blame game ...

 

The kindest thing I can say is that they are feeling overwhelmed and shell-shocked and very self-protective ... and they can only keep attempting to maintain their revolving door ... which breaks down every day ...

 

And this new, blatant "blame game" was a surprise ... doctors are the problem, they will not follow our patient recommendations, the ER is the problem, they refuse to diagnose and will only refer, patients are the problem, they won't take their meds properly ... and most sadly, people just don't know how to cope anymore ... an undertone that is perhaps becoming a shout of "why are you bothering us" ... the mental health version of "we and them" ...

 

And ... there is no support in our community for folks who recognize the drugs are part of the problem and need community support to come off them ... and they need further support to work through the issues that remain ... nothing here locally ...

 

And no recognition that acute is the gateway to chronic with the present modalities Community Mental Health presents to patients ...

 

I need to sit with this some more ... to listen some more to this inner dialogue I am having between the personal and the community ...

 

I am thankful that I am now far enough along in my healing to accept this dialogue, and feeling very small in the face of this mountain range ... and carrying the hope that there is a "pass" through these mountains ...

 

As Drew reminds us ... another day in the books ... 

 

Hope we all have a good Tuesday ... 

[[...]]

Sky-- sorry you are having such a rough time, thinking of you 

 

 

Hi all,

So, my right eye is still twitching and my eyes feel dry and sore.. This is w/d right? Someone please reassure me. Also, I'm getting floaters, I know you can get them as we age and they are harmless, but are they part of w/d too or no?

 

I'd say it's WD Jenny. My vision is affected; some days its blurred, it was yesterday, not as bad today, however I am still in a wave. It is more pain, nerve type pain. Also I keep getting a patch on my eyelid that goes dry and sore. I've never had a sensitive skin.

[[...]]

Coop, that’s wonderful you had a great time, I was thinking of you. This will have given you so much confidence. I think you have passed that point now and it’s all going to be positive all the way to the end. 

[[...]]

Well my wave continues, got a little break yesterday evening then awful nerve pain in the night. No head pressure today, lots of anxiety and that feeling where the nerves are on fire. Oh and feels like a face plant could happen at any time.  I’m at work totally agitated, I’m going for a one step in front of the other walk.

 

My close friend on here has just told me she has had 2 whole window days recently, so that has given me some more hope for healing,  faith it will be soon. Can’t wait to love life again…………….. breathe and accept 

 

 

[[be...]]

 

 

I am in such a wave now, I have been feeling awful for two, three days. But what worried me, was having depression, negativity and paranoia back in my life.

 

Well, back from acute. Paranoia is awful and mine is mild, I can't imagine the real thing. I have the malevolent feeling again, remember the one Sue  described so accurately ?

 

My vibrations are stronger than uusal and my heart is beating quite fast.

 

 

Mr Sky knew something was wrong when I didn't start banging on about going out for our evening bike ride !

 

And I am so lucky depression has not been my dominant symptom. I fear health fears, depression and exhaustion.

 

So, I have been quite lucky to not have had them as badly as you guys have.

 

When things are bad, I try to run a list of what things are good. sometimes it works, other times it doesn't, my brain just has to go to dark places.

 

And I am slower minded as well. Hard to imagine being any slower minded than I already was, but there you are .

 

Sky, so sorry about the bad wave. Are you feeling better today?

Remember..this too..shall pass.

[[be...]]

Morning all,

 

Nova, the Mental health system is so broken..give them drugs to help them..oh the drugs don't work anymore..here..try this..Oh, now you are worse..let's get you some help..just walk right through that revolving door over there and someone will be right with you to help.  So sad what all of this has come to.

We are little people in all of this with Big stories to tell...but the medical community won't listen...because they are to busy pointing fingers and placing blame.

 

We are very fortunate that we have this site and each other..much better than their revolving door help.

 

Let us count our blessings.

[[be...]]

Coop- Oh my goodness, the wedding sounds like just what you needed...you are sounding so good.

So happy everything went well and you felt joy in your heart and present in the moment.

Ahh, the letdown blues after the wedding..it's normal..I had it also...it actually has a name..but I forget it.

You know what, Your ex seems to be good for you...just sayin.

Relax now and soak in all of the wonderful memories.

Have a restful day.

[[Sk...]]

Good Morning ... had my consult with our version of Community Mental Health yesterday afternoon ...

 

The best I can say about the "consult" is that I received a disturbing confirmation of the "politics of mental health" in our community ...

 

I went to the consult to see how things have changed in our community over the past five years ... and carried the hope that there may be some small seed that is beginning to germinate, some small shift in awareness ...

 

What I would found is deeper entrenchment of fiefdoms and the blatant espousal of a new version of the blame game ...

 

The kindest thing I can say is that they are feeling overwhelmed and shell-shocked and very self-protective ... and they can only keep attempting to maintain their revolving door ... which breaks down every day ...

 

And this new, blatant "blame game" was a surprise ... doctors are the problem, they will not follow our patient recommendations, the ER is the problem, they refuse to diagnose and will only refer, patients are the problem, they won't take their meds properly ... and most sadly, people just don't know how to cope anymore ... an undertone that is perhaps becoming a shout of "why are you bothering us" ... the mental health version of "we and them" ...

 

And ... there is no support in our community for folks who recognize the drugs are part of the problem and need community support to come off them ... and they need further support to work through the issues that remain ... nothing here locally ...

 

And no recognition that acute is the gateway to chronic with the present modalities Community Mental Health presents to patients ...

 

I need to sit with this some more ... to listen some more to this inner dialogue I am having between the personal and the community ...

 

I am thankful that I am now far enough along in my healing to accept this dialogue, and feeling very small in the face of this mountain range ... and carrying the hope that there is a "pass" through these mountains ...

 

As Drew reminds us ... another day in the books ... 

 

Hope we all have a good Tuesday ... 

 

Nova,  I hear you.

 

When I was in full Ct at the hospital where I had been operated on, the doctors were furious with me.

 

When I started  having hallucinations, and went on for 3 days, the doctor told mr Sky I was "a ball breaker " and it was my fault because I needed to walk  more.

 

I did not know where I was, I was really out of it, and they talked about me as " it " ( hard to translate from Italian ) as if taking  a distance from me. Mr Sky got so angry about that one.

 

And they would go on and say, oh well, she's crazy anyway.

 

After, when I talked to a doctor who is a family friend, and told him about the horror, he said exactly the same thing. He said, " oh, you don't know what they have to go through ".

 

A friend instead, said " Oh but that's because they have to deal with old people all the time ". As if that explained it, as if we were not going to become old one day and were not all deserving of some attention.

 

I am looking forward to hearing the result of your musings.

 

I am feeling better today, but I feel like a truck just ran over me.

 

I kept picturing myself in protracted only for my mind symptoms. I saw myself in another two years not being able to handle money yet and not able to function without a block note always at hand.

 

Crazy thoughts, all and every one of them.

[[Sk...]]

 

 

I am in such a wave now, I have been feeling awful for two, three days. But what worried me, was having depression, negativity and paranoia back in my life.

 

Well, back from acute. Paranoia is awful and mine is mild, I can't imagine the real thing. I have the malevolent feeling again, remember the one Sue  described so accurately ?

 

My vibrations are stronger than uusal and my heart is beating quite fast.

 

Mr Sky knew something was wrong when I didn't start banging on about going out for our evening bike ride !

 

And I am so lucky depression has not been my dominant symptom. I fear health fears, depression and exhaustion.

 

So, I have been quite lucky to not have had them as badly as you guys have.

 

When things are bad, I try to run a list of what things are good. sometimes it works, other times it doesn't, my brain just has to go to dark places.

 

And I am slower minded as well. Hard to imagine being any slower minded than I already was, but there you are .

 

 

Sorry to hear sky

I'm on day 7 of on off cycling depression. I guess it's a so called wave. Depression has played a big part of this horrendous recovery and it's by far the sx most despised and feared. Even though I never had had it until I came off the drug.

 

Depression had tapered down from every other day to once or twice a week, the return of it this far out for consecutive days, is quite disturbing. As far as I'm concerned ,The psych crap at this stage of the game is tough business. 

 

Feel better soon

 

Here's an interesting article for all :

 

http://www.huffingtonpost.com/van-winkles/the-daily-nightmare-of-be_b_7866700.html

 

Jrod, thanks for the article.

 

I have always thought that it would be nice to have a place where people can speak about wd in a more interactive way, even if they can't write.

 

Must be a security nightmare though.

 

Her  other observations fit a lot with Nova's insights.

[[Sk...]]

Sky-- sorry you are having such a rough time, thinking of you 

 

 

Hi all,

So, my right eye is still twitching and my eyes feel dry and sore.. This is w/d right? Someone please reassure me. Also, I'm getting floaters, I know you can get them as we age and they are harmless, but are they part of w/d too or no?

 

Jenny, floaters have plagued me big time right from the start.

 

THe best piece of advice I got, right at the beginning, was to ignore every thing that came from my eyes. ANd I have and it's helped enormously.

 

Floaters, itchiness, lack of eyesight, anything originating there, is wd.

 

So sorry to hear you are having it, it's quite unsettling. Eyes are so delicate, it is natural to want to keep them safe.

[[Sk...]]

Hi 12-18 buddies,... I don't have a snowball's chance of catching up here....just going to jump on with update...

......All went well with the wedding. I am just now recovering from the great emotion that I knew it would be.

  .....I am amazed at how absolutely normal and present I felt through the entire 2 days of activities and celebration . .  I really could not have imagined that it would go so well. The drive to the venue was a 90 minute drive each way.  We did that 4 times total. I have not been on a road trip in 2 years and even pre-benzos I was mildly phobic about cars, ( only on the freeway or traveling at speed), planes, boats etc.  I only had one bout of car fear and that was on the way back feeling tired ,emotional and vulnerable to panic...no panic just some fear that passed. The first night we went up for the rehearsal. I had some ' normal' nervousness that anyone would anticipating thier child's wedding. The day of was wonderful. I had a few moments of head pressure and anxiety just as guests started coming in all of a sudden in  ig groups. Seemed like at least 75 people waited until 20 minutes before the ceremony to flow in like a sea of people.  I thought I was going to be lost in d/r during the ceremony, but the few moments of anxiety let up. I enjoyed every moment of the ceremony crystal clear, present, happy and sad and intensely emotional.  Perfectly normal. I enjoyed every single moment. The family photos...the dinner.  a few hours of the reception and party. I talked with people with a clear happy engaged mind, truly connected, hugged about 100 people, ate at least some of the dinner and had some wine....all with no ill effects. I really can't believe it..  I have to say that having my ex at my side ( I drove all trips with him and we went through the whole thing together.  Actually we were there with and for each other, I was able to be supportive and present for him too). All in all a wonderful memorable happy time. No way could I have done this even 3 months ago.

  ...I have had some depression and sadness in the 2 days following, but I believe it is 'normal' grieving for my daughter's childhood and all those things we feel when our children are no longer children......all intensified by the last (hopefully) lingering w/d s/x.

    ...I hope I won't be smacked down brutally, but I have to say that I feel at least 85%  done.. Even my health fear seems to be ranging in the 'normal' with only worry and frustration regarding the reflux.  I ate some yummy stuff at the wedding , but I was pretty careful.  No real reflux even with the wine, but the next day I was really hungry at dinner and ate a too large meal of salmon, pasta and green beans ( I forgot Beulah's rule of not letting myself get too hungry)  I had discomfort all night.  I won't be making that mistake again. I will be seeing a gastrointerologist on the 6th , but I am not dreading it or catrastopheing about it.

..  ..There is so much that is better.  My ability to be with people , be connected and be in true conversation is 90% back....I really can't believe it.  I am getting bored with the routines and distractions that I have been clinging to for 2 years. I am completely losing my fear of going out to meet friends for coffee or lunch..or a movie.  Mornings are still a little rocky with a little hodge podge of sx such as anxiety or depression or waking up with some cortisol surges health fear or fatigue.  But it is consistently letting up by at least noon. I am beginning to think about what I want to do with my life now that I am feeling better. I feel that I still have quite a ways to go before that 85% -90% is reliable ....at least another 6-9 months.  But it feels so manageable . 

    .Well.  that was a very long update... Wishing all of you big sunbreaks.  I will go back over the posts and try to catch up.  coop

 

Coop, I have read your posts about your daughter and I found them so moving and honest.

 

I loved how you explained how you felt about giving your " maybe baby " away. And your ex husband, how great to have such a nice relationship with an ex.

 

And your daughter sounds so nice, how she has stood by you all through wd. Your daughter through and through.

 

I am so happy to hear you had this special day, standing up to wd and showing who is boss.

 

This may be the beginning of something amazing, your healing.

[[...]]

Coop....what a fantastical update

 

I don't know my best month. I seem to have some good weeks throughout though.  I'm passing the time. Got annoyed w how long this takes a little while ago.  My brain is getting stimulated too easily and it's exhausting. As Coop would say "if this one thing was gone..."  Well we know how it ends.    I had a decent day of work.  Minor flare of panic that lasted a minute and trouble with over stimulation talking on the phone and w colleagues.  To me that's decent. I come home and literally just lie in bed and do nothing for over an hour. I'm too tired mentally to do anything.  Even move. Guess this is healing. My body and brain saying take it easy. Do others get this?  I'm now getting my second wind to move to the couch.

 

 

I can relate to what you are saying Drew. The over stimulation at work and our brains trying to freak out, it is exhausting. Also my hearing is so sentitive, I jump at things so easily and some people seem to talk really loud and I have to put my earphones in to listen to something calming. I always say, when I get home I'm just going to flop too. Sometimes I do, sometimes not and do something crazy like clean the bathroom ( that is rare). I  also get annoyed and I know it does not serve any purpose, I'm sure this is the case with most.  Anxiety has been high this morning and I managed to calm by going for a brisk walk. Now I just feel really flat/heavy almost brain dead, apathetic, probably exhaustion. Don't know what is worst, yes I do , all of it! We'll get there in the end 

[[dr...]]

thx for chiming in marge...

 

I slept pretty well as I am really working on sleep hygiene and still using the tryptophan.  No negative side effects I can notice plus it's supposed to help with migraines.  We shall see.  At three weeks since last visual aura.  Even with the good sleep my heart palp/breathing trouble, anxiety switch flipped on in the car this am.  reminded myself to do the breathing stuff and positive talk. It might be a hard day but I will make it as always.

 

I dd stop in quick to get my test results on my cholesterol and the nurse practitioner believed I could still feel crappy after 15 months..YAY!  When I said I was shocked she didn't tell me like most other Dr's it only will last a month she said she has done a lot of reading on it lately.  May I dare say there is progress being made?  She did say why not take lexapro or something else to make it easier but when I said no she understood and didn't push.  She respected what I was doing.

 

I got great news on my cholesterol.  I dropped  50 on the bad cholesterol and all my numbers are extremely healthy now.  I know i will only get better when I feel better and can do more to improve my body.  That is all.

[[...]]

That's great to hear the nurse verified this. I think we are so impressionable, for someone medical to understand is huge in the same way as a negative can have the opposite effect. It makes sense why we need reassurance so much going through this the counteract all the negativity going on in our heads. It amazes me how quickly the switch does flick. Great news on the cholesterol too.

 

Yes we cannot rush this. We will get better........ 

[[Gr...]]

Good Morning ... had my consult with our version of Community Mental Health yesterday afternoon ...

 

The best I can say about the "consult" is that I received a disturbing confirmation of the "politics of mental health" in our community ...

 

I went to the consult to see how things have changed in our community over the past five years ... and carried the hope that there may be some small seed that is beginning to germinate, some small shift in awareness ...

 

What I would found is deeper entrenchment of fiefdoms and the blatant espousal of a new version of the blame game ...

 

The kindest thing I can say is that they are feeling overwhelmed and shell-shocked and very self-protective ... and they can only keep attempting to maintain their revolving door ... which breaks down every day ...

 

And this new, blatant "blame game" was a surprise ... doctors are the problem, they will not follow our patient recommendations, the ER is the problem, they refuse to diagnose and will only refer, patients are the problem, they won't take their meds properly ... and most sadly, people just don't know how to cope anymore ... an undertone that is perhaps becoming a shout of "why are you bothering us" ... the mental health version of "we and them" ...

 

And ... there is no support in our community for folks who recognize the drugs are part of the problem and need community support to come off them ... and they need further support to work through the issues that remain ... nothing here locally ...

 

And no recognition that acute is the gateway to chronic with the present modalities Community Mental Health presents to patients ...

 

I need to sit with this some more ... to listen some more to this inner dialogue I am having between the personal and the community ...

 

I am thankful that I am now far enough along in my healing to accept this dialogue, and feeling very small in the face of this mountain range ... and carrying the hope that there is a "pass" through these mountains ...

 

As Drew reminds us ... another day in the books ... 

 

Hope we all have a good Tuesday ... 

 

Nova, it is what it is.  I understood once my head started clearing up that we're not gonna win this battle.  Big Pharma is firmly entrenched.  there's just way too much money at stake.  There's no smoking gun, no whistleblowers like there was for Big Tobacco.  well, there are, but no one listens to them. 

 

But we have won, winning is getting off and understanding how the game is played.  but we can't help or save anyone!  My older son has a legitimate anxiety issue, since he was a kid.  He has no issues with drugs or alcohol. very good kid.  but has anxiety that interferes with his life. causes him to withdraw at times.  And he has decided to seek help.  and I'm horrified that he's going to a psychiatrist, wants to do it his way, won't hear anything about CBT, didn't seem to learn from watching what happened to me, even though I've been very open about it, because I want them to know, and their friends to know, and I'm willing to let people know I had a prescription drug problem if it spares even one other person from this nightmare.

 

Nova, I don't think anyone cares.  I think people believe us, some of them, but I don't think anyone is outraged, no one really cares.  The best we can do is spread the word on a grass roots level and thank God for people like Colin, who truly make a difference, who truly has saved people's lives with this site.

 

PS  sorry you've had a bad couple of days.  I'm struggling, too.  I was so happy to lose the mental I wasn't acknowledging that the physical is starting to get intense.  Hopefully we'll both see some better days soon.

[[Gr...]]

thx for chiming in marge...

 

I slept pretty well as I am really working on sleep hygiene and still using the tryptophan.  No negative side effects I can notice plus it's supposed to help with migraines.  We shall see.  At three weeks since last visual aura.  Even with the good sleep my heart palp/breathing trouble, anxiety switch flipped on in the car this am.  reminded myself to do the breathing stuff and positive talk. It might be a hard day but I will make it as always.

 

I dd stop in quick to get my test results on my cholesterol and the nurse practitioner believed I could still feel crappy after 15 months..YAY!  When I said I was shocked she didn't tell me like most other Dr's it only will last a month she said she has done a lot of reading on it lately.  May I dare say there is progress being made?  She did say why not take lexapro or something else to make it easier but when I said no she understood and didn't push.  She respected what I was doing.

 

I got great news on my cholesterol.  I dropped  50 on the bad cholesterol and all my numbers are extremely healthy now.  I know i will only get better when I feel better and can do more to improve my body.  That is all.

 

Drew, kudos on cholesterol!  good for you.  I have to get mine done when I can deal with doctors again.

 

Glad to hear that conversation with the nurse.  I think nurses have always "seen" lots but don't dare speak up.

[[dr...]]

Getting hit hard here at work today....nonstop head sensations, anxiety, breathing issues, etc...ugh....

[[...]]

I'm right there too Drew, hold on, I am doing my best. 

 

Went to pick my daughter and my nieces up after I finished work, was shaky then. One of my nieces was sick in the back of my car OMG. it was already late, I'm not good with sick under normal circumstances but had to sort her as she lost her Mum (my sister). I am literally shaking, can't see clearly or breathe. Thank God my daughter is here to help me cook or us.

 

Sorry Drew, for how this hits us, it's just the nervous system out of sync. It will pass. This will not hurt you and one day soon it will be over. 15+ months is done now. I spoke to Bristol TP today and they have lots of people at this stage exactly the same level of suffering. He said this is perfectly normal and he wouldn't expect anything else. The ones that heal quicker are definitely the minority in their experience and that is vast,years and years. Just like Baylissa. They cannot be wrong 

[[Se...]]

Sorry Drew, for how this hits us, it's just the nervous system out of sync. It will pass. This will not hurt you and one day soon it will be over. 15+ months is done now. I spoke to Bristol TP today and they have lots of people at this stage exactly the same level of suffering. He said this is perfectly normal and he wouldn't expect anything else. The ones that heal quicker are definitely the minority in their experience and that is vast,years and years. Just like Baylissa. They cannot be wrong 

 

Thanks for posting this, marj.  It gives me hope today.  I have to believe it is truth.  How nice it must be for you to have the telephone support from experts who can reassure.  How I wish we had something similar here.  Alas, North America is far behind in this regard.

[[dr...]]

Thanks marj...always good to read that.  I was thinking this is more the norm from all of us here.  Im still hoping for rapid healing.  Lol.  I'm going to meditate now and I have a cranial massage in two hours.  My head hurts like a b$tch too.  Left work early.  No reason to be a hero and suffer more.

 

Sorry you're in the soup with me serenity n large.  In happy coop isn't though.    coop?  You still feeling good?