12-18 month support

[[Si...]]

Hi SkyHD,

 

I know how tough it can be in hot weather. Luckily we do have AC. I'm in the Southeast US. I think today is around 87 degrees Farenheit. It will surely get hotter in Summer.

 

I had one of the worst days yesterday since acute. Luckily I got to sleep last night, so I was able to go do Mother's Day with my wife's family.

[[No...]]

Hi Sky ... your are sounding pretty good even with the symptoms ... keep going my friend ... we are getting there ... 

[[No...]]

Siggy ... things will change on a dime sometimes ... I never know what to expect ... good to hear you got to spend some good time with your family ... 

[[Mi...]]

Hello all.  Today is the start of month 20 today.  Couldn't be happier about that.  I have been doing insane amounts of manual labor during this 80 degree week and holding up pretty well......except for some dizziness I get when I've pushed too hard for too long.  I lay down for an hour or so and it backs off.  Worked my butt off again today staining lumber and framing crap. Had to rest for a while to recoop from the spacey dizzy junk.  Just finished dinner, just finished an ice cold beer.  I feel good.

 

I just read the newer success stories, haven't checked on them in like a month or so.  Those are the best. 

 

Ok that's all, don't feel like typing much, rather be outside waiting for a cool breeze to come along.  (It's still 80)

 

A positive mother's day post is all I had in mind for today.  Be well people.

[[Gr...]]

Nova...you have been through it. I totally agree, not only do individual meds have sx, combinations of drugs complicate the whole mess. I gained 10 pounds within 6 weeks of going on ativan...and much of it was fluid. I could see the swelling in my face and ankles. I was also taking mclazine for the ear condition . I went off the mclazine as I thought the ativan was the be all and end all for vertigo and anxiety ( which it was.  until about 6 weeks in when it wasnt)  I dropped the 10 pounds and the fluid when I dropped the mclazine. I tried to tell my ENT this.  He practically rolled his eyes at me. " fluid retention and weight gain is not a side effect of either one of the drugs you are taking".  Right in the patient insert for mclazine....fluid retention. ...also dizziness.  wait, I thought I was taking the mclazine to reduce vertigo.

    I agree with you and Beulah.  We are not stupid.  We know our bodies ( we live in them 24/7)  Now if I feel like something is causing me a side effect I believe myself . When I told my physician that propanolol caused me increased palpitations he insisted that couldn't be as it is often given for arrhythmias.  I insisted on a medication change.  sure enough switched to atenolol for b/p spikes and palps calmed down .. We know what we are talking about.

..  .That was a terrible circular misdiagnosis and wrong rx ..one after another in an awful loop . I am sorry that happened to you. I honestly believe that doctors do not know anything really about the drugs they prescribe.

  ..I hope you are having a better day . .. Yep, carry on...coop

 

Coop, how true, but if they don't know anything about the drugs they prescribe, they really have no business prescribing them, do they ?

 

 

Here, same old, same old. Only change the heat, and that affects me big time.

 

I had a lesson and the heat got so bad, my head started spinning and I got incredible nausea. And I had the webcam, so I had to keep on faking.

 

I had some bad moments today too but now I am ok. 

 

Before you guys say anything, AC in my house is not an option, electricity is very expensive in Italy and I can't afford it. BUt I really would need it.

 

I get tired easily so I am listening to my body very carefully and try not to push myself at all. Just my lessons and naps- a hamster on a wheel' s life. But hamsters are happy creatures too.

 

Today, we went to Ikea. I have to tell you that pre cold turkey, I would have done anything to avoid Ikea, I hated every single thing about it. Now, it's fun, go figure. So, I wonder, is this me or is it wd ? 

 

We bought a few things, small things, we bought an orange juice , freshly squeezed, it was the tastiest thing in this world. Now, I am lovingly looking at our purchases.

 

In the car, there was a moment in which the heat was too much and my heart was hurting and I could not breathe. I grabbed my thumb in my hand, as I read in Baylissa's book, the Jin Shin Jyutsu technique, while mr Sky turned on the AC and I did some breathing exercises till things got better.

 

So, tomorrow was ok, tomorrow probably will not and so on. And I will get tired, mentally and physically and I will despair, but things are getting better somehow.

 

My thoughts ramble, my memories crowd my brain, but if I can squeeze a smile in, here and there, it's ok.

 

So glad to hear HealingHope is getting so well that wd seems far away. And I think Drew might be getting better, who knows, he might be next ?

 

Speak later . 

 

Sky, I relate :  is this me or is this withdrawal?  I think I ask myself that question five times a day.  Time will tell, I guess.

 

I use the pulling of the fingers, and the direction to the Unconscious Mind works well for me, when panic descends.  At least we have a couple of tools.  when this wave rolled in, I had nothing, I was getting killed.

 

I was reading LostDog last night -- he's my goto lately.  And I'm hanging on every word, analyzing, the way bible scholars interpret scripture!  but he said at month 18 he was still struggling.  It looks like 22 months is the number for a lot of people.

 

I know I shouldn't be hanging my hat on that, bcuz if M22 comes and goes and I don't get better 'til 24 or 25 or 26, am I setting myself up?  I don't know.  I know I need to hope, to look into the future, because living in the moment is not doing it for me right now!

 

Nova, my lotto number did not come up today either! :'(

 

Coop, hope things are quiet for you today, and that you had a lovely lunch with the kids and grandkids

 

Hope everyone had a nice mother's day.

[[Gr...]]

Hello all.  Today is the start of month 20 today.  Couldn't be happier about that.  I have been doing insane amounts of manual labor during this 80 degree week and holding up pretty well......except for some dizziness I get when I've pushed too hard for too long.  I lay down for an hour or so and it backs off.  Worked my butt off again today staining lumber and framing crap. Had to rest for a while to recoop from the spacey dizzy junk.  Just finished dinner, just finished an ice cold beer.  I feel good.

 

I just read the newer success stories, haven't checked on them in like a month or so.  Those are the best. 

 

Ok that's all, don't feel like typing much, rather be outside waiting for a cool breeze to come along.  (It's still 80)

 

A positive mother's day post is all I had in mind for today.  Be well people.

 

Mike,

 

Congrats on starting M20!  So glad to hear you're in a pretty good place.  Yes, doing a little and taking a rest, that's working.  I'm not doing what you're doing, lol!  But I noticed that works, riding my bike, cooking, stuff in the house.  do something.  stop, take a rest. and get up and do some more.  That totally works

[[No...]]

Hi Green ... hope you had a mildly quiet day ... sitting here this evening with the sternum anxiety stuff and the benzo belly ... not a bad day ... just boring ...

 

Be Well ...

[[No...]]

Hi Mike ... congrats on month 20 ... you sound good ... hope this ends for you soon ... 

[[Fi...]]

MikeJee--

 

You go, buddie!  Sounds like we're on the same track.  I'm just about six weeks ahead of you, only counting  for comparision.  I'm the grouchy non-celebrator of these numbers.  Would rather celebrate things like you staining lumber and me painting and hanging wallpaper!

 

What's working for me is grabbing the windows of feeling good and just going for it, not getting too dismayed over the waves, seeing how they seem to be getting shorter and less intense.

 

Beulah--your healing pattern sounds like mine.  I really think we're getting there!

 

Happy Mother's Day, all!

[[Si...]]

Siggy ... things will change on a dime sometimes ... I never know what to expect ... good to hear you got to spend some good time with your family ... 

 

Thanks yes this stuff makes no sense at all. Did some yard work earlier. I feel a little better today but my brain is surging still, which hasn't happened since I came out of acute. It ramps some anxiety up, which isn't a s/x that I've had to deal with much. I'm really hoping to be able to sleep again tonight as I don't want to have to go to work tomorrow feeling like I did yesterday. Really wishing this shit would pass already.

 

Hope everyone else is enjoying today.

[[Co...]]

Mike...could you please come to my house, I can't seem to find the motivation to fill the 3 geranium planters with soil and get the geraniums settled...lol

...mercy...I could use some of your 'just do it' attitude ..

..Mike , you sound great...so happy for you! ...and great encouragement for those of us following behind you...I read Conzumed's update ...he was perfectly normal at the year 2 mark....hope and more hope....thanks for the post Mike.....coop

[[Co...]]

Sky...yes, " things are getting better somehow"...I had no idea that electricity is so pricey in Italy...I think I could suffer if I could have all the Italalian coffee and wine I wanted...

....I seem to have borrowed your good day/ bad day pattern. I hope if morphs into every day is a good day ....soon.

...Ikea...wow...I couldnt handle Ikea before benzo either..

...I am hanging onto Mike's post....our month 20 is coming along too....rest up Sky.....coop

[[Co...]]

I think I had a sweet time with my kids and grandsons...my body was present but it turned out to be one of the worst days for d/r and d/p...all rolled up in one...total cog fog and disconnect. I honestly felt very dementia-ish.. it was kind of scary how thick it was...I know I will look back on it and enjoy the ' movie like' memory of it...and next year there will be another Mother's Day...Tomorrow should be better. My mornings have been running in the d/r and head pressure track ...and then lifting here and there throughout the day...

....things were not good today, but I do think healing is going on...Yep, hoping the next few months has me moving rocks...or at least lawn furniture....coop

[[Si...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

[[Co...]]

Siggy, I have been in a deep wave for about 6/7 weeks...still trying to swim to the top ...but I do feel greater healing in the sunbreaks that I get along the way. ..I was thrown off by the longevity of this wave too. I think a lot of the success stories speak of things getting intense and giving way to improvement or better baselines...let's hope....coop

[[Fi...]]

Siggy-- I  don't know that I can say that there is great healing after a bad wave.  Everybody wants to think that because they're desperate to give meaning to their suffering.  I think our brains are healing all the time, though, doing whatever our brains need to do to get us there.  It's crazy making trying to sort out how it all works, and I think, ultimately, a waste of energy.  I think we just keep hanging on through the terrible rollercoaster ride that represents our healing and live through whatever it is we have to live through until we come out again into the light.

 

And come out into the light we will.

 

Sometimes, on a day when I'm feeling really good, I struggle with remembering a day where it seemed I felt just as good....eight months ago!  But I just know there's been underlying healing going on.  It would take less stress back then to push me into the abyss.  I'm stabler now.  That's healing, right?

 

I believe the success stories and know we're getting there.  All I can do is try to live each day the best I can and lately that means focussing more on what's going right than what's going wrong.  Sometimes I say to myself, "Okay, what would you do if you were completely well?"  And then see if I can make a start on that anyway. 

 

This absolutely does not apply on days when I'm smacked down and there's nothing to do but get cozy with my heating pad.  Then all bets are off.  I'm sick and that's all there is to it.

 

So, you're question was--is there great healing after a wave?  Maybe, who knows?  But you'll be so happy to be out of the wave, you'll FEEL more healed!

[[Si...]]

Siggy, I have been in a deep wave for about 6/7 weeks...still trying to swim to the top ...but I do feel greater healing in the sunbreaks that I get along the way. ..I was thrown off by the longevity of this wave too. I think a lot of the success stories speak of things getting intense and giving way to improvement or better baselines...let's hope....coop

 

Truly yes, let's hope!

 

Hoping that when this passes (hopefully soon too) that I'll be much better. The three weeks or so that I was sleeping well every night, I would get really drowsy some nights. That happened back when I came out of acute too. I actually long for that feeling of not being able to stay awake at night. It definetly beats feeling constant brain buzzing and pulsing.

[[Si...]]

Siggy-- I  don't know that I can say that there is great healing after a bad wave.  Everybody wants to think that because they're desperate to give meaning to their suffering.  I think our brains are healing all the time, though, doing whatever our brains need to do to get us there.  It's crazy making trying to sort out how it all works, and I think, ultimately, a waste of energy.  I think we just keep hanging on through the terrible rollercoaster ride that represents our healing and live through whatever it is we have to live through until we come out again into the light.

 

And come out into the light we will.

 

Sometimes, on a day when I'm feeling really good, I struggle with remembering a day where it seemed I felt just as good....eight months ago!  But I just know there's been underlying healing going on.  It would take less stress back then to push me into the abyss.  I'm stabler now.  That's healing, right?

 

I believe the success stories and know we're getting there.  All I can do is try to live each day the best I can and lately that means focussing more on what's going right than what's going wrong.  Sometimes I say to myself, "Okay, what would you do if you were completely well?"  And then see if I can make a start on that anyway. 

 

This absolutely does not apply on days when I'm smacked down and there's nothing to do but get cozy with my heating pad.  Then all bets are off.  I'm sick and that's all there is to it.

 

So, you're question was--is there great healing after a wave?  Maybe, who knows?  But you'll be so happy to be out of the wave, you'll FEEL more healed!

 

Thanks, yes just trying to make sense of it like you said. What's really weird too is that when I do sleep every night, i have no real worries that I'm going to sleep every night. I can tell when my brain feels different and that I will have problems sleeping when in a wave.

[[Co...]]

Siggy, I have the head pressure and ' rushing' with hissing tinnitus in this wave too. I thought those were gone a few months ago.  It's pretty intense in this wave. It's a hard sx to ignore...It causes anxiety for me. ...I use a hot pack to the back of my neck and I think it helps momentarily...at least it's comforting.

....We will be happy to roll out of this one.. Quiet and rest helps my head pressure and d/r, but I try to do easy chores etc. throughout the day as well.  like Green said...rest/do something....rest/do something..

.....Wishing you some sunbreaks....coop

[[Gr...]]

Hi Green ... hope you had a mildly quiet day ... sitting here this evening with the sternum anxiety stuff and the benzo belly ... not a bad day ... just boring ...

 

Be Well ...

 

Yes, Nova, got the stiff sternum, the anxiety, and a nice big old benzo belly!  And, yes, you hit it right on the head, it is very boring now.

[[Gr...]]

I think I had a sweet time with my kids and grandsons...my body was present but it turned out to be one of the worst days for d/r and d/p...all rolled up in one...total cog fog and disconnect. I honestly felt very dementia-ish.. it was kind of scary how thick it was...I know I will look back on it and enjoy the ' movie like' memory of it...and next year there will be another Mother's Day...Tomorrow should be better. My mornings have been running in the d/r and head pressure track ...and then lifting here and there throughout the day...

....things were not good today, but I do think healing is going on...Yep, hoping the next few months has me moving rocks...or at least lawn furniture....coop

 

Yes, Coop, it's alternate days now.  I've been reading, and that occasional heavy DR comes up -- with all the mental clarity we get at M18, there are some very heavy fog DR days tossed in.  I'm sorry you got one of yours today, with your grandkids. 

 

I wasn't too great either, felt tired.  it worked out, though, we ate late, and I was better in the late afternoon.  My older son told me it was a nice day, that we seemed more "normal" than last year.  I was happy to hear him say that, because I'm definitely more normal, but I felt a little sad, a little guilty, acknowledging that I'm not the only one who lost time because of this, the people in my life did, too.

 

Anyhow, remembering last mother's day -- not so good, apparently, probably pretty bad.  So there has been tremendous healing from last year.

[[Gr...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

 

Sig,

I had my most significant healing after my hardest waves.  Month 12 was a biggie.  By 12.5 I had a beautiful window.  All major waves are followed by great healing, great improvements.  When I'm in the middle of a wave, that does not help me!

[[Sk...]]

Nova...you have been through it. I totally agree, not only do individual meds have sx, combinations of drugs complicate the whole mess. I gained 10 pounds within 6 weeks of going on ativan...and much of it was fluid. I could see the swelling in my face and ankles. I was also taking mclazine for the ear condition . I went off the mclazine as I thought the ativan was the be all and end all for vertigo and anxiety ( which it was.  until about 6 weeks in when it wasnt)  I dropped the 10 pounds and the fluid when I dropped the mclazine. I tried to tell my ENT this.  He practically rolled his eyes at me. " fluid retention and weight gain is not a side effect of either one of the drugs you are taking".  Right in the patient insert for mclazine....fluid retention. ...also dizziness.  wait, I thought I was taking the mclazine to reduce vertigo.

    I agree with you and Beulah.  We are not stupid.  We know our bodies ( we live in them 24/7)  Now if I feel like something is causing me a side effect I believe myself . When I told my physician that propanolol caused me increased palpitations he insisted that couldn't be as it is often given for arrhythmias.  I insisted on a medication change.  sure enough switched to atenolol for b/p spikes and palps calmed down .. We know what we are talking about.

..  .That was a terrible circular misdiagnosis and wrong rx ..one after another in an awful loop . I am sorry that happened to you. I honestly believe that doctors do not know anything really about the drugs they prescribe.

  ..I hope you are having a better day . .. Yep, carry on...coop

 

Coop, how true, but if they don't know anything about the drugs they prescribe, they really have no business prescribing them, do they ?

 

 

Here, same old, same old. Only change the heat, and that affects me big time.

 

I had a lesson and the heat got so bad, my head started spinning and I got incredible nausea. And I had the webcam, so I had to keep on faking.

 

I had some bad moments today too but now I am ok. 

 

Before you guys say anything, AC in my house is not an option, electricity is very expensive in Italy and I can't afford it. BUt I really would need it.

 

I get tired easily so I am listening to my body very carefully and try not to push myself at all. Just my lessons and naps- a hamster on a wheel' s life. But hamsters are happy creatures too.

 

Today, we went to Ikea. I have to tell you that pre cold turkey, I would have done anything to avoid Ikea, I hated every single thing about it. Now, it's fun, go figure. So, I wonder, is this me or is it wd ? 

 

We bought a few things, small things, we bought an orange juice , freshly squeezed, it was the tastiest thing in this world. Now, I am lovingly looking at our purchases.

 

In the car, there was a moment in which the heat was too much and my heart was hurting and I could not breathe. I grabbed my thumb in my hand, as I read in Baylissa's book, the Jin Shin Jyutsu technique, while mr Sky turned on the AC and I did some breathing exercises till things got better.

 

So, tomorrow was ok, tomorrow probably will not and so on. And I will get tired, mentally and physically and I will despair, but things are getting better somehow.

 

My thoughts ramble, my memories crowd my brain, but if I can squeeze a smile in, here and there, it's ok.

 

So glad to hear HealingHope is getting so well that wd seems far away. And I think Drew might be getting better, who knows, he might be next ?

 

Speak later . 

 

Sky, I relate :  is this me or is this withdrawal?  I think I ask myself that question five times a day.  Time will tell, I guess.

 

I use the pulling of the fingers, and the direction to the Unconscious Mind works well for me, when panic descends.  At least we have a couple of tools.  when this wave rolled in, I had nothing, I was getting killed.

 

I was reading LostDog last night -- he's my goto lately.  And I'm hanging on every word, analyzing, the way bible scholars interpret scripture!  but he said at month 18 he was still struggling.  It looks like 22 months is the number for a lot of people.

 

I know I shouldn't be hanging my hat on that, bcuz if M22 comes and goes and I don't get better 'til 24 or 25 or 26, am I setting myself up?  I don't know.  I know I need to hope, to look into the future, because living in the moment is not doing it for me right now!

 

Nova, my lotto number did not come up today either! :'(

 

Coop, hope things are quiet for you today, and that you had a lovely lunch with the kids and grandkids

 

Hope everyone had a nice mother's day.

 

Sue, I should know better than to make a joke in wd.    I was talking about feeling well, when you do, do you wonder if good moments are wd  too ? 

 

Luckily this is the one symptom I have lost, I am sure that whatever life throws at me these days, is wd.

[[Si...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

 

Sig,

I had my most significant healing after my hardest waves.  Month 12 was a biggie.  By 12.5 I had a beautiful window.  All major waves are followed by great healing, great improvements.  When I'm in the middle of a wave, that does not help me!

 

Well here I am wide awake again. I was trying not to get on my phone, but I just lay in bed doing nothing for four hours straight barely moving hoping I'll pass out. I get up and drink some water and wander around the house fora few minutes. I get in our guest room bed so I don't bother my wife with tossing and turning. She can take a nap during the day and still sleep all night. I'm happy for her, but of course jealous about it too. I need to start keeping a journal so I can try and follow my ups and downs. Sorry got the rambling. I'm just really tired of all of this.

[[Sk...]]

Do all of you find that after a bad wave that you feel you've progressed in healing? I guess maybe I was a little thrown off by having what possibly was a very long wave of five months. Definetly in a terrible wave the last two months.

 

Sig,

I had my most significant healing after my hardest waves.  Month 12 was a biggie.  By 12.5 I had a beautiful window.  All major waves are followed by great healing, great improvements.  When I'm in the middle of a wave, that does not help me!

 

Well here I am wide awake again. I was trying not to get on my phone, but I just lay in bed doing nothing for four hours straight barely moving hoping I'll pass out. I get up and drink some water and wander around the house fora few minutes. I get in our guest room bed so I don't bother my wife with tossing and turning. She can take a nap during the day and still sleep all night. I'm happy for her, but of course jealous about it too. I need to start keeping a journal so I can try and follow my ups and downs. Sorry got the rambling. I'm just really tired of all of this.

 

Siggy, you do need to keep some sort of journal so you will notice the improvements. There are improvements even when it does not seem like it but without a journal I would never have known.

 

How considerate of you to change bed. MR Sky will not let me change bed, he worries something bad will happen to me, he rather not sleep. At one year, I would have been to scared to sleep in another room, I still am, so good for you.

 

Ramble away, that' s what the forum is for. Sorry you are awake at this hour but it's nice for me to have someone to talk to !

 

Take care, 12 months is huge.