6-12 month thread....

[[No...]]

Hi Cool ... that sure makes for a long "nite" ... how have you been? ... don't think our paths have crossed in a while ... I have been moving between some "alright" stretches and some "not so good" stretches ... sleep ... I just take it when it comes ... I have found no point in worrying myself about it ...

 

Take Care ...

[[...]]

I have absolutely no problem falling asleep! I have trouble keeping my eyes open! My problem is waking to early! It's alright though, it will fix itself eventually!

 

I can function fine on 6.5 hours!

 

[[Fr...]]

Hi Everyone,

 

Nova -  so happy to hear the dark cloud lifted for you and that things are getting better.

 

Coop - I'm glad your bad wave passed rapidly.

 

Jrod- I have that same one good day, one lousy day pattern.  We shall recover soon from all this.

 

GMIT - I hope your windows come back to you soon.  The sleeping issue is a hard one.  I'm having trouble with that one lately too.

 

Greenice - that's wonderful news about your window !  May it stay forever.

 

MRS - I noticed you take nortriptiline.  Do you find it helps you?  If so, in what way?  I have Elavil on hand for pain, but it helps with sleep too.  I am so tired from poor sleep quality and considering taking a bit for sleep very rarely but am scared.  Do you think it's helping your wd?

 

xo,

Lisa

 

[[je...]]

Congrats on the nice window Green!! You deserve it, and I'm glad you have come out of your darkness.

 

Question for everyone-- when your sx  are cycling do they come and go quickly or do you just swap one for the other?

 

Well, I have a baby shower to go to today and my sister will be there. Big day of socializing and I just don't feel up for it. Wish me luck! Jenny

[[...]]

Good luck Jenny!! 

 

Lisa, how are you?

 

Green, hopefully you are still in your window!!

 

[[Fr...]]

Jenny - I hope the shower goes well for you.

 

Lisa

[[mr...]]

MRS - I noticed you take nortriptiline.  Do you find it helps you?  If so, in what way?  I have Elavil on hand for pain, but it helps with sleep too.  I am so tired from poor sleep quality and considering taking a bit for sleep very rarely but am scared.  Do you think it's helping your wd?

 

Hi Lisa,

 

I was prescribed the nortriptyline back in 2012 when I was having tolerance symptoms but didn't know it. I was having a lot of GI symptoms back then, and it was prescribed to help with the nausea. It helped slightly. As far as its effect now, I do not know for certain, but I did not want to try tapering both meds at once. So that's why I am still taking it

 

I hope this helps some for you I also hope you are feeling better Take care buddy,

 

Mrs.

[[Gr...]]

Congrats on the nice window Green!! You deserve it, and I'm glad you have come out of your darkness.

 

Question for everyone-- when your sx  are cycling do they come and go quickly or do you just swap one for the other?

 

Well, I have a baby shower to go to today and my sister will be there. Big day of socializing and I just don't feel up for it. Wish me luck! Jenny

 

Jenny, good luck with the shower.  Have a nice day.

[[mr...]]

Hi gang,

 

Just a question for you all

 

For those who did a taper, how did you feel towards the end of it?  Were you more or less symptomatic?  Just curious   These past few months, in my waves, I have proved to be more symptomatic than prior.  Although I've had some of the best windows as well -- which have been greatly appreciated  

 

How is everyone doing today?

 

Mrs.

[[Gr...]]

I'm still sleeping 5 to 6 hours a night and not falling asleep till around 5-7 am. I'm almost a year out.

 

Cool, I did that, not falling asleep until 5-7 a.m., and it was a nightmare.  I don't know how I survived.  Finally started using Sleep Tonight!, which has ashwagandha.  I still don't fall asleep until 3-4, but it's a lot better than 5-7.  Good luck

[[Co...]]

Green....I am doing a happy happy happy dance for you!...You so deserve that window....I am hoping with all my heart that it is the one that stays wide open for you and never ever closes. Yes,  ..a swim in the ocean...a bike ride...so well worth the shoulder pain. Yes...working on mood is such s good thing yo help ourselves during w/d. I try to do the things that really matter to me even if I "don't feel like it ". I have to qualify that by saying I was absolutely unable to do that until I had some semblence pf stability and that didn't happen for me until month 8. Even at that I had to start so slow and easy. I started with things that really meant the most to me, seeing my grandchildren...going to pt and going to the bookstore ...also short grocery and clothes shopping. At first I took someone with me ( how wimpy is that!). Now with about a week into month 9 I go by myself. My s/x are also ( at month 9) stable enough to push myself a little by self talk (I.e....you have felt like this thousands of times...you did not die...you did not die in public....if you fl die you want it to be while living your life not huddled in your bed at 3 pm....). I have to emphasize again....I was unable to do this until I felt at least 65% stable on most days and I ventured in slow steady steps ( after going full out a few times and suffering for it)....I guess my point is:  each time I followed through on something when I was feeling s/x I gained some confidence for my ' I will get my life back ' bank and I usually made it through either in spite of s/x or the s/x let up. I started with one hour 'ventures ' at first. I was very timid ( unlike MightyGirl Green) and went slow and careful. I was in one of the worst waves of the past few months yesterday when I went to my grandson 's birthday flight,  but I just could not miss it. I was disconnected from d/r and couldn't really ' feel ' the joy of it.....but today my s/x are nearly non- existent and I am enjoying the moment delayed and I am so glad I went. I wont lie...I did not feel good the whole time I was there. I have to say though that it was the first time in 6 weeks that I was miserable the entire time I was out.....I do not recommend this gentle push forward in a acute if you can avoid it. ...I love Nova 's approach...just ' be ' with it and do what you can. Also I very much recommend keeping a 'window journal '. That has been one of the most helpful things to me alongside of reading the success stories. If you don't get windows journal your improvements and good days. In a bad wave it is impossible to remember or look forward to a window. My brain just could not access it. The success stories seemed years and years away and written by people who healed,  unlike me the one person who was doomed to never ever heal. My positive journal helped...

........We are all going to heal and I really believe so much healing happens in the first year with the 'returning yo our lives ' emerges in the second...just a grounded hope on my part,  but it seems to be going in that direction for many of us in this group.  It seems like most of us who are in the 7-12 month time frame are out of bed and 'venturing '.....huge huge difference for me when compared to last August.

.......My terrible awful no good black wave of yesterday lifted completely this morning. A little head 'fullness ' as opossed to head pressure...I will take it. Wishing everyone a very sunny day...

....btw...I think the beta block depression.,  for me,  is after taking it for 3-4 days in a row...more like a side effect. The rebound cortisol surge ( if I understandmy physician) is as the medication leaves the system in between doses

[[li...]]

I am so happy for those that are feeling better or great!  For those that are suffering, I totally am in that camp as of right now. I know it will lift but the beast has been tempting me. I feel better than yesterday by "accepting and not resisting". That practice helps a bunch. I have so many external stresses that I just could not or was not ready to deal with them. I just have to remind myself that every day in every way I am stronger and stronger! My blood pressure and heart rate is much better today. I have not taken a beta blocker but once two day ago. I pray that I and everyone hear heal real soon. God bless my buddies.

 

Life

[[Mo...]]

Good morning everyone. 

 

Another night of sleep and no funk when I woke up.  This is sooooo nice.  What a difference.  Thank you all for encouraging me the other day.  Honestly, it seems when the waves get low it's hard to tell if it's you or not.  Now that I am out of it, I can see it was the wave.. and a long one.  I knew I understood it to be one, but it's very surprising how much it affects your brain without you realizing.  Seriously, I not able to see the forest for the trees.  Green said.'if you have to question yourself then you know it's not you'. genius words.

 

Last night we did a repeat date since last week was an epic fail.  We went to movies again.  This time was better, but movies are very tough for me.  The noise and size of the screen puts me on edge.  We saw Guardians of the Galaxy.  Very cute and funny.  Some minor violence I closed my eyes for and sad moments, but I got thru them.  Honestly, the fact that I almost shed a tear during one moment let me know I was symptomatic, but only a tiny bit.  It was very pleasant and a success on the date meter.

 

Mrs - Good job tracking those windows!  Do you remember the multiple choice questions in school tests we were taught the 'always' and 'never' statements were usually false?  Good thing to remember!  As far as the taper question.  I am cautious when I answer because people read our posts looking to see what things will be like.  Here is my disclaimer:  Everyone is different. Some are great after taper and the worst is behind them.  Some it's vice versa.  I became much worse after my taper finished.  There was nothing to regulate.  No dose to look forward and hang on to.  My pain and crazy train magnified more then during the taper.  With that said, I also had big solid windows.  So my waves became tsunami's and my windows became solariums.  I started evening out around 4 months after my taper.  More victories and ability to see this would end. 

 

Life- You said things I really wanted to hear yesterday.  Really?.. You wake up one day and it's gone for good?!?!  Do you know how wonderful that will be.  No more of this.. poof it's gone.  That means it has a day to end...An appointed day it will be done.  I can wait 14 months.  Thank you for saying that.  It's sooooo hard to see things on our own when we are wavy.  Those words meant a lot.  Please remember them for yourself too.  Just because you are in a wave does not make them false. 

 

Nova- I was wondering where you were.  I have been getting sleep now, so the sun gets up without me and knocks on my door!  I am glad you have a release.  Yes, definitely going to enjoy my Sunday

 

GMIT- So wonderful you went out with your daughter.  Thank you for always being encouraging.  I am so grateful when people take the time to respond to specific concerns. 

 

Cool- 5-6 is good, correct?  I used to need 8hrs.  Forget that nonsense.  I hold on to my 6 hours.  I am 10 months now, but my sleep disruptions are sporadic.

 

Jenny - Big Day.  You probably already left for the shower.  My prayers are with you.  Much Luck!!  My s/x can do both.  I get the deck of cards and can see all of them being played at once.  My brain will try to pick an emotion and I watch to see which hand will be played.  Then I get one of the four, fear/panic/anxiety/depression.  Sometimes there is a very fast spike during my normal times.  It's like an opera singer in my head that gets louder until she is screaming and then it is gone.  Those can last 4 hours.  The other wavy stuff can last a day or longer.  Fear and panic like to take turns.  I can start with Fear the levels down into panic or start with panic that rises into fear. 

 

Green - Big happy dance for you over here.  So nice to get a break.  Wow, I was riding along with you.  Who cares if you are sore, right?  What a glorious visual!  Thank you for taking us along.  Working on mood... Sooo hard.  It's actually easier for me to push out of things the more intense they are.  Coop is right on the doing things that matter even if you don't feel like it.  That is why I start with dishes and laundry.  They are two basics that must be done to keep the ball rolling.  They give me a sense of accomplishment and then I can add another item to my list.  Sometimes it's just getting up and dressed and out of the house.  I have friends I ask to help get me out of the house.  It seems accomplishing a task is my #1 mood helper.  Acute sensations are not really there anymore for me, so I am liking Coops explanation.  I seem to draw lines in the sand for myself.  I wind up on one side or the other.  Minimal tasking or maximum tasking.  My first CNS blow out was during vacation.  That was my first big venture.  It was fun but traumatic.  Trying to work is also a big stretch for me.  Journaling is very beneficial.  When I am in a window..waves are years behind me.  When I am in a wave.. windows are years behind me.  No matter how small, I still need the reassurance of others during a wave.  I like to bump up against the good vibes and take them for my own. 

 

Coop - the terrible, horrible, no good, very bad 'wave'..haha..love it.  That is the title of a book.  Not sure everyone knows that.  I am so glad the wave has lifted.  Yes, it's important to experience life even when we don't feel like it.  My last horrible 'i need to go to emergency' episode was during my 3 year olds birthday.  The nausea was piercing.  I could not not have a party.  Now I look back at the pictures and I'm so glad we did it.  It was a no frills, throw my money at Chuck e cheese party, but we did it. 

 

Ok, need to find something for the kids to do.. remember this stuff can turn around just as quickly as it came.  Just like Life said.. 15 minutes from now, things can subside.

 

MommyR

[[Gr...]]

Green....I am doing a happy happy happy dance for you!...You so deserve that window....I am hoping with all my heart that it is the one that stays wide open for you and never ever closes. Yes,  ..a swim in the ocean...a bike ride...so well worth the shoulder pain. Yes...working on mood is such s good thing yo help ourselves during w/d. I try to do the things that really matter to me even if I "don't feel like it ". I have to qualify that by saying I was absolutely unable to do that until I had some semblence pf stability and that didn't happen for me until month 8. Even at that I had to start so slow and easy. I started with things that really meant the most to me, seeing my grandchildren...going to pt and going to the bookstore ...also short grocery and clothes shopping. At first I took someone with me ( how wimpy is that!). Now with about a week into month 9 I go by myself. My s/x are also ( at month 9) stable enough to push myself a little by self talk (I.e....you have felt like this thousands of times...you did not die...you did not die in public....if you fl die you want it to be while living your life not huddled in your bed at 3 pm....). I have to emphasize again....I was unable to do this until I felt at least 65% stable on most days and I ventured in slow steady steps ( after going full out a few times and suffering for it)....I guess my point is:  each time I followed through on something when I was feeling s/x I gained some confidence for my ' I will get my life back ' bank and I usually made it through either in spite of s/x or the s/x let up. I started with one hour 'ventures ' at first. I was very timid ( unlike MightyGirl Green) and went slow and careful. I was in one of the worst waves of the past few months yesterday when I went to my grandson 's birthday flight,  but I just could not miss it. I was disconnected from d/r and couldn't really ' feel ' the joy of it.....but today my s/x are nearly non- existent and I am enjoying the moment delayed and I am so glad I went. I wont lie...I did not feel good the whole time I was there. I have to say though that it was the first time in 6 weeks that I was miserable the entire time I was out.....I do not recommend this gentle push forward in a acute if you can avoid it. ...I love Nova 's approach...just ' be ' with it and do what you can. Also I very much recommend keeping a 'window journal '. That has been one of the most helpful things to me alongside of reading the success stories. If you don't get windows journal your improvements and good days. In a bad wave it is impossible to remember or look forward to a window. My brain just could not access it. The success stories seemed years and years away and written by people who healed,  unlike me the one person who was doomed to never ever heal. My positive journal helped...

........We are all going to heal and I really believe so much healing happens in the first year with the 'returning yo our lives ' emerges in the second...just a grounded hope on my part,  but it seems to be going in that direction for many of us in this group.  It seems like most of us who are in the 7-12 month time frame are out of bed and 'venturing '.....huge huge difference for me when compared to last August.

.......My terrible awful no good black wave of yesterday lifted completely this morning. A little head 'fullness ' as opossed to head pressure...I will take it. Wishing everyone a very sunny day...

....btw...I think the beta block depression.,  for me,  is after taking it for 3-4 days in a row...more like a side effect. The rebound cortisol surge ( if I understandmy physician) is as the medication leaves the system in between doses

 

My God, Coop, you and I have had a very rough road.  I'm glad you talked about the painstaking steps forward, learning to walk again.  I'm feeling emotional as I respond to you.  I sat through my son's graduation sick, emotionally numb and vibrating inside, but, like you, I would NEVER miss that.  And you're right, I have the memory to enjoy.  I was there, no matter what I was going through at the time.

 

There's a difference between feeling well enough to get out the door and be present at something, and being there alive in the moment. 

 

I'm so glad that nasty wave lifted for you.  I hope and pray that all of us turn that corner where windows stay open longer and longer, until they never close at all.

[[li...]]

My God, Coop, you and I have had a very rough road.  I'm glad you talked about the painstaking steps forward, learning to walk again.  I'm feeling emotional as I respond to you.  I sat through my son's graduation sick, emotionally numb and vibrating inside, but, like you, I would NEVER miss that.  And you're right, I have the memory to enjoy.  I was there, no matter what I was going through at the time.

 

There's a difference between feeling well enough to get out the door and be present at something, and being there alive in the moment. 

 

I'm so glad that nasty wave lifted for you.  I hope and pray that all of us turn that corner where windows stay open longer and longer, until they never close at all.

 

GreenIce, I agree, there is definitely a difference between being able to do something and actually enjoying it and being in the moment. Look, I know that we are all going to heal and I pray the best for all of us, but when I am in a wave it feels very distant. And I actually can remember the windows. Now my benzo lies are going like this today " since the litigation case is being heard soon I will not be able to enjoy a window in three months" ,  ( I mean I actually have more windows than waves in the past two months and still have these thoughts! ). I just wished for all of us that this marry-go-round would just stop and leave everyone of us off at the ramp.

 

Love to all! 

 

Life

[[mr...]]

What great posts gang!

 

Life, I'll "bust" that benzo lie for you (as River Wolf would say).

 

I've heard that lie, too. Still do sometimes, but I know its a lie. My husband traveled out of town for two nights and three days (Friday through Sunday) at the end of July. The LIE said I'd be anxious the whole time. Sick. Etc. I wasn't. In fact, I had a lovely enough window on Saturday that I TOOK A NAP in the afternoon (haven't done that in YEARS). And, I slept like 8-10 hours on Saturday night. And, I had some really fun times during the weekend too! Was I more anxious/symptomatic than "usual"? Yes. Did I have a wave that followed it? You bet -- a rougher one. But I DID it -- AND with some good windows mixed in, and some good times too!! The window that followed on the Friday after was AWESOME. We went camping and I had NO ISSUES AT ALL. Amazing!

 

Benzo lie: [ busted ]

 

 

Looking forward to continuing to bust the lies We CAN do it -- YES we can.

 

Today I feel very well -- I am SO grateful Praise you Father, Abba

 

Take care buddies,

 

Mrs.

[[...]]

Mrs, you sound so great! You are right, we will do this! We are doing it!!

 

Aren't we awesome?!?!

 

[[mr...]]

Mrs, you sound so great! You are right, we will do this! We are doing it!!

 

Aren't we awesome?!?!

 

 

Yes we are!! #createdinhisimage

 

Mrs.

[[li...]]

mrs, you words are greatly appreciated. I am in a dark place these past two days and I have been here before but do not like it at all. It is the one symptom that I have that is my last -- deep depression. It usually last about two day and out. Please pray for me that it does not last longer. With the litigation, the death of my friends 14 year old daughter, my brother being estranged, and all the house guests we had last week, the travel down to our home in florida etc -- been a bit for one week. Just please pray for me.

 

Life

[[pe...]]

Jenny - How was the shower? I  hope your sister was on good behavior and that your symptoms resolved enough for you to enjoy pieces of the party.

 

I am certainly in the functional but not enjoying it phase. I feel this thin strand of joy trying to glow beneath the waves. It's fine and it's exhausting. Chop wood, carry water. In my case it's more like drag the bucket uphill while the water sloshes over the sides. I'm tired folks. Nothing you don't know.

 

Peace2

[[pe...]]

Life - I'm lighting a candle for you. Literally and figuratively. Look for the light. You will make it out of the darkness, this time and as many times as it takes.

 

Peace2

[[...]]

Peace, you describe it well...functional but not enjoying phase...that describes me well!

 

I am so thankful to be as well as I am, I am not suffering at all, as we all have, but not healed.

 

[[li...]]

Life - I'm lighting a candle for you. Literally and figuratively. Look for the light. You will make it out of the darkness, this time and as many times as it takes.

 

Peace2

 

So glad to hear from you, peace. I read the link on the depression thread and I commented. Depression is the one last symptom that I have that really scares me. Thank you for the candle; it is appreciated!

 

life

[[Fr...]]

I will say prayers for you Life.  I'm sorry you are feeling so low.

 

Peace, I'm glad you're seeing some light shining through.

 

Mrs, you too - good for you!

 

Jenny, I hope the shower went well.

 

hi everyone else, still having a rough time here today

yesterday was a nice window but it closed way too fast

head pressure today and feeling awful, poor sleep lately and oh so tired

feeling in shock or something and like this will never be over

 

Lisa

[[...]]

So frustrating! Love hearing about the windows and everyone feeling good, frustrating to hear how quickly we can each turn and not feel well again!!

 

Praying for relief for each of you!!!