12-18 month support

[[Co...]]

Drew, ...sounds like your wave is rolling out. I always feel so beat up and exhausted after a panic and anxiety...it just takes the stuffing out of us for a few days. I hope it lifts all the way and you can get some rest and catch your breath again.. It does get better Drew.  ...coop

[[Sk...]]

Hey everyone, praying all is well. Did any of you deal with poor balance and leg weakness/jelly legs? Poor balance just seems to not want to leave me and I'm experiencing jelly legs again. I have these weird sensations in my legs.

 

Its taking me a lot to not scream and cry at my desk at work.

 

I don't want to stop walking...ever! I've read horror stories on bb's of folks not being able to walk, severe weakness, etc.

 

Anyway...pray for me. I sometimes feel like this living nightmare will never end.

 

LM, this does happen though. I  get some stiffness in the legs, but last year it was so much worse. It's awful to see old symptoms pop up again, but there you are, apparently it is part of the process.

 

I know what you mean, not being ab le to walk is horrifying, at this stage it's awful, so sorry you are going through this. HAng in there.

[[Sk...]]

Sky,...so sorry to hear this. It is so cruel to have a good day dissolve back into w/d... it's really a wonder that we are still marching on with this. My very good day went to hell too...I knew it would, but every time I have an effortless mind day I am tempted to think , "this is IT, I am healed".  to wake up the next day back in w/d thinking, " This is IT...I am dying for sure"..  It's so very difficult to have any kind of life like this.

.....So so sorry Sky that you are on the bus with me and Green. Wishing you some sunbreaks ...and a ton of better sleep....coop

 

I am feeling so awful, my heart is pounding so hard during lesssons it was so  hard to focus. I have been having stupid pains aat what would appear to be my liver, a new enrty apparently.

 

And in all this chaos, I had a lesson of Spanish, my benzo obsession, I am planning a holiday on some fabulous Spanish  beach when I heal. In my dreams because who  has the money these days ?  My  heart was pounding but I had an amazing lesson, all the studying of this year has really paid off but the whole time that poor heart was  pounding and I just had to ignore it, what are we doing ? it's our heart, we should have the right  to worry.  Mr sky could hear the pounding, he was lying next to me. He said " how do you put up with it ? I can't even take hearing it ! "

 

And I am almost afraid to eat, because then, it gets so bad, it's even scarier. If the food I eat did not have important nutrients for heart and brain, I really would skip it altogether

Coop,yes I am on the bus with you guys. At least there is good company !

 

I am copying this stuff on genetic testing, it is so interesting. I wil get my mom and mr Sky to look into it, someone with a brain.

 

Sorry there is so much suffering on the thread today. we are getting through this, and then , we will  be proud of ourselves,we are  doing amazing stuff here.

 

Hope the night is calmer, I am sure tomorrow will be better,how can it not be ?

 

healing thoughts to you all.

[[Co...]]

Sky, I don't know how you tolerate the pounding heart? Have you had it all the way through? ...Has a bta blocker ever helped. ...Eating sometimes triggers my palps too, but not for very long. ...It lets up on some days right?.  Its pretty amazing that 16 months post jump we still get acute sx...I will be reading lostdog and eli today.  This king of you Sky.  Yes, wishing for a much better day for all of us tomorrow.  Actually wishing for damn 100% healing for all of us.  Today!

      coop

[[Sk...]]

Coop, the pounding heart came later on, it's not something I have had all along. Yes, it does let up on some days, and i hope that day will come soon ! Like tomorrow !

[[dr...]]

My pounding/racing hearrt excluding panic situations didn't show up until 3-4 months post jump too

[[ro...]]

I'm at 13.5 months myself and was hit with the mother of all waves right at the one year mark which happened to be Christmas. I found out that the food I was eating was making my waves MUCH worse. Histamine intolerance is what it was (is). Intermittent fasting has helped tremendously by skipping breakfast and of course eating a diet as healthy as possible. Look into these things, they just might help.

[[Lo...]]

Hey everyone, praying all is well. Did any of you deal with poor balance and leg weakness/jelly legs? Poor balance just seems to not want to leave me and I'm experiencing jelly legs again. I have these weird sensations in my legs.

 

Its taking me a lot to not scream and cry at my desk at work.

 

I don't want to stop walking...ever! I've read horror stories on bb's of folks not being able to walk, severe weakness, etc.

 

Anyway...pray for me. I sometimes feel like this living nightmare will never end.

 

LM, this does happen though. I  get some stiffness in the legs, but last year it was so much worse. It's awful to see old symptoms pop up again, but there you are, apparently it is part of the process.

 

I know what you mean, not being ab le to walk is horrifying, at this stage it's awful, so sorry you are going through this. HAng in there.

 

The intrusive thoughts are awful and when I get jelly legs I go to a dark place.

 

Like Drew said, this symptom has waxed and waned and I continued to walk. Praying tomorrow is better.

 

The head pressure is back too...my God what a wave!

 

Heading into month 10 being off next weekend. Praying it will get better. 

[[Mi...]]

Three quick things to say, just here catching up on a lot of reading....

 

1.  Heart palps started later on for me, I still get them, usually it has something to do with a meal, or from overeating junk food.

 

2.  Sasquach:  I can relate to your situation very easily.  I'm going through w/d still, my wife has been going downhill for 2 years, and my son is autistic.  The picture you painted almost made me cry.  Please go to Disney, please!  Push yourself and just do it dammit!  Even if you have some tough times on vacation you will never forget that trip and it will always make you smile looking back.  Get tough and book that trip!  Just say YES!

 

3.  Nice Pink Floyd avatar.

[[Co...]]

I seem to be getting a new sx...extreme total exhaustion. So physically fatigued that I actually feel weak and  'sinking'.  like I literally can not get up.  It's scary.  Lasts from 1-4/5 hours and then slowly gets a little better. I have not had this until month 16...the surprises just keep coming. I have had fatigue before, especially after a day of anxiety or panics.  But this is beyond anything I have ever experienced. Just thought I would ask.    Thanks....coop

[[dr...]]

Coop....this is newer for me too.  Crushing waves of fatigue.  I wonder if it was just hidden by all the other symptoms.

[[He...]]

LM I get the same things and I get the scary thought of being bed ridden too.  I then remind myself I haven't read of one person becoming bedridden this far out as a new symptom.  It has been a constant symptom for you that waxes and wanes but you haven't been not able to walk yet.  It is the benzo brain causing the irrational fears so you have something to panic about.  Hope you feel better soon.

 

Your reassurance means a lot to me. My legs were seriously worked in 2 days. Going up and down a flight of steps 3 times for laundry, cleaning off the snow off of my SUV, climbing over mounds of snow today then I did a light workout last night.

 

I'm feeling a little shaky too (anxiety/panic/fear).

 

This is a lot. Drew we have to make it. Sorry you aren't feeling well.

 

Sending you lots of healing & love!

 

Hi LM and Drew,

I get similar thoughts, too. I'll worry that I will, out of the blue, get so bad that I will become bed-ridden and lose my job. I think it probably stems from not trusting our bodies. How could we? They have been behaving so independently and irrationally for so long now!  Why I should have this particular fear, I don't know, because I have only missed maybe a week total of work since I started tapering 25 months ago. 

 

You had a lot of activity, LM. That would probably make me feel weak and shaky, too!

HH

[[He...]]

Hi everyone!

Lots of yuck on the thread today. This HAS to get better soon!

 

My day has been quite good. I have had a few times with some light physical symptoms, but nothing severe. I'm at home for about an hour and then I'm going to my older daughter's bball game. This is a BIG one....win they continue on with post-season play, lose the season is over. Last year tonight's game would have caused me to not sleep last night and have extreme anxiety all day. Today I've got some normal nervousness for my daughter because I know how much she wants this win, but I'm not anywhere close to freaking out. 

 

I'm glad to hear about your bouts of fatigue, because I get them also. It kicks up my health fears as I read once about a symptom of heart attack is extreme fatigue. That stupid heart attack fear again!  It must just be that our bodies have times of being worn out from working so hard at repair.

 

I hope to be able to report back with a win tonight!!

 

Love to you all,

HH

[[sa...]]

MikeJee -- Sorry to hear you are in a similar situation. Does she also have cancer too? So so sorry. I'll try my best for Disney. I have 3 months till then and I'm at 15 months into w/d. Hopefully I will be in better shape by then. Nothing like a little pressure when going through this.

 

She is away in Vermont with my son. Gone to her sisters for feb vacation. Being alone in the house knowing this is how it will be someday really sucks. Normally I'd enjoy a little guy time but not now. Not anymore. The intrusive thought and benzo fear are running wild with all of this.

 

I hope everyone gets out of their respective waves before the weekend. Tough couple of weeks...

[[Co...]]

Thanks Drew,...for me, I would have noticed this along with other sx.  It is better now ...and I only slept for about 2 hours last night...I think K it might be what some BBs refer to as toxic naps...not really sleeping just sinking into paralyzing fatigue and then having the intrusive thoughts and images. ..

....Hoping for a better day tomorrow.  For you too...hope you are out of the soup by tomorrow.

......HH...you are sounding so good...it is immensly encouraging to those of us right behind you. I and Drew and you have all had cardiac evaluations so I think the bone crushing fatigue is w/d, but like you I start spinning with health fears. I have also heard the fatigue/heart attack connection. How can we not hear all the health fears they are advertised every 2 minutes on tv....I avoid all medical programming , articles and googles...Good luck tonight with the big game. 

.....

coop

[[mr...]]

Hey gang,

 

Just checking in. Its been an "ickier" couple weeks: "benzo fear", those stupid irrational benzo thoughts that "threat" with "you can't cope", "you can't do", or "you're 'done' for" -- all LIES I KNOW. But sheesh -- friggin' LEAVE already. During the "heat" of withdrawal, I had lots of benzo irrational fears pop up. Many have left, but some just nip and bite at my heels still...SO looking forward to DEMISE-ING them FOREVER. They are so ridiculous, and I NEVER had them pre-benzos. Roar!! They need to kick the bucket already! Can anyone else relate? Stupid irrationals... :tickedoff:

 

My apologies for some gripes, gang. I would really love to hear some reassurance that this CRAP gets FIRED at some point, lol. I mean, I know that it will, but its so good to hear (and re-hear and re-hear).

 

HH, so good to hear of your good day! So happy for you Green, Sky, Coop, I understand how you feel. Green, is it you with the elevated heartrate? I find this can happen for me, if: I consume a larger amount of simple carbs or sugars, even natural sugars like fruit, milk (lactose is still a sugar), etc. Also if: j eat a large meal - like pretty much any restaurant sized meal lol. I usually need to split it in half and take half home. Also if: I eat "rich" flavored foods, like buttery, salty, heavy seasoned, etc. They taste so gooooood though! But I work at keeping them in balance, which is not always easy! I know you've noticed this occurs sometimes after eating, do you notice certain foods too? I used to be heavily affected by certain times of day, too. I'd read up on cortisol peaks & dips throughout the day, and I discovered that some people don't only experience a "peak" in the early AM hours - there are some folks who experience a "peak" sometimes in the afternoon/early evenings. I think this was (is) me also - my worst symptoms used to "peak" between 3-6pm sometime, and then slowly settle down into the evening hours (sometimes into the VERY late evening / early next AM hours!). I rarely notice that anymore, which is great. Excepting the past week of so Do you notice it at certain times of day? Tachycardia used to be one of my "least fav" symptoms, and I am grateful for the progress I've made there. Onward, yes please!

 

Sasq, MJ - you guys are so awesome and so strong. Sasq, I believe she will probably be fine - I'm on faith for you, bro. Keep in mind that, even if her doctors have given you a "less-than-desirable" report, doctors often are expected to sorta provide the "worst case" because they don't want to get sued later just in case, you know? I've known plenty of cancer survivors who have been told...we'll just say that they beat the "odds". I believe your wife will, too, buddy

 

OK, off to walk w/ Mr. Thanks for listening to my gripings tonight. Love to you,

 

Mrs.

[[Co...]]

Hop on the bus Mrs....Yes I can definitely relate. I don't think I have read any posts, progress journals or success stories in which intrusive thoughts and fears were not a major theme. Mine were wicked in acute through month 7/8 and then got better and now have been revisiting in months 15/16. I will say that this time around they are not 24/7 and I can tolerate them better. ...Yes.  reassurance.. over and over and over.  It's all benzo...you have a great ability to resist the fear , but we all need to hear it 10,000 x and 10,000 more times....pretty soon this bus will stop and we will all get off.. .hold on Mrs.  Hope you have a very good evening without the yuks....coop

[[no...]]

those lies our head tells us in those times of waves DO settle down- remember that. I am inherently anxious, and those thoughts of not being able to----- (fill in blank) are part of my routine. They were of epic proportion while in the thick of withdrawal, and they are much less now, but there are still times they flare up. You have to try and accept it, and just sit with it there, but not fan the flames with imaginings. I have learned to let it be there, that irrational fear, and just think of it as raw emotion, but not to label it as fear, and definitely not start adding a storyline of omg narrative. When it happens, I say hello, and nod my head, and just think of it much the way I would a sudden headache- as a feeling that I try and experience as a raw bodily sensation without words. And when the words come up anyway...well, I consider it a challenge, a dare. And I accept the challenge and even say aloud- watch me do it anyway. Maybe it will be the "end of everything" but I am going down trying, not running away from it. It has worked so far.I have learned tons of coping mechanisms for fear. And in the end, it always eventually fizzles out like the imposter it truly is.

north

[[Ca...]]

Mrs dear,

  I read your post tonight after a particularly fearful/depressive day myself. I want to stop and offer encouragement. You've been there for me time and time again. Thank you friend.

  I just had a long evening walk with my dog talking to myself the whole way. Reminding myself that my anatomy and physiology are righting themselves and until they are functioning properly I may have these hard waves of fear and depression. I am right with you...enough already! A fear of raccoons?! It's almost funny. It's a hum of irrational raw fear. Even the sound of my breath can cause a reaction.

  I tell you this because just yesterday I felt pretty well. I was symptomatic but the fear was gone. It can come and go so quickly. For me it is usually accompanied by more intense physical symptoms. I think it is the pattern my healing at this snail pace low dose taper is taking. I better just face it and keep on moving toward zero.

  You asked me to let you know when I reach my final milestones. This week I am at . 25 mg of V. Getting ready to pass that baton!

  So dear one...keep looking forward. Believe in the process of healing. You've got everything you need to make this journey.

  Much love,

Carita

[[Gr...]]

I'm at 13.5 months myself and was hit with the mother of all waves right at the one year mark which happened to be Christmas. I found out that the food I was eating was making my waves MUCH worse. Histamine intolerance is what it was (is). Intermittent fasting has helped tremendously by skipping breakfast and of course eating a diet as healthy as possible. Look into these things, they just might help.

 

I just read your signature, RF.  That's a story from hell.  Also, that 12 month wave is very common, Coop and I got slammed by it, too.  Hope things are better for you now.

[[Sk...]]

Hey gang,

 

Just checking in. Its been an "ickier" couple weeks: "benzo fear", those stupid irrational benzo thoughts that "threat" with "you can't cope", "you can't do", or "you're 'done' for" -- all LIES I KNOW. But sheesh -- friggin' LEAVE already. During the "heat" of withdrawal, I had lots of benzo irrational fears pop up. Many have left, but some just nip and bite at my heels still...SO looking forward to DEMISE-ING them FOREVER. They are so ridiculous, and I NEVER had them pre-benzos. Roar!! They need to kick the bucket already! Can anyone else relate? Stupid irrationals... :tickedoff:

 

My apologies for some gripes, gang. I would really love to hear some reassurance that this CRAP gets FIRED at some point, lol. I mean, I know that it will, but its so good to hear (and re-hear and re-hear).

 

HH, so good to hear of your good day! So happy for you Green, Sky, Coop, I understand how you feel. Green, is it you with the elevated heartrate? I find this can happen for me, if: I consume a larger amount of simple carbs or sugars, even natural sugars like fruit, milk (lactose is still a sugar), etc. Also if: j eat a large meal - like pretty much any restaurant sized meal lol. I usually need to split it in half and take half home. Also if: I eat "rich" flavored foods, like buttery, salty, heavy seasoned, etc. They taste so gooooood though! But I work at keeping them in balance, which is not always easy! I know you've noticed this occurs sometimes after eating, do you notice certain foods too? I used to be heavily affected by certain times of day, too. I'd read up on cortisol peaks & dips throughout the day, and I discovered that some people don't only experience a "peak" in the early AM hours - there are some folks who experience a "peak" sometimes in the afternoon/early evenings. I think this was (is) me also - my worst symptoms used to "peak" between 3-6pm sometime, and then slowly settle down into the evening hours (sometimes into the VERY late evening / early next AM hours!). I rarely notice that anymore, which is great. Excepting the past week of so Do you notice it at certain times of day? Tachycardia used to be one of my "least fav" symptoms, and I am grateful for the progress I've made there. Onward, yes please!

 

Sasq, MJ - you guys are so awesome and so strong. Sasq, I believe she will probably be fine - I'm on faith for you, bro. Keep in mind that, even if her doctors have given you a "less-than-desirable" report, doctors often are expected to sorta provide the "worst case" because they don't want to get sued later just in case, you know? I've known plenty of cancer survivors who have been told...we'll just say that they beat the "odds". I believe your wife will, too, buddy

 

OK, off to walk w/ Mr. Thanks for listening to my gripings tonight. Love to you,

 

Mrs.

 

Mrs, and  all the buddies who suggested i check my diet, do I avoid fruit sugars altogether ? I have been eating tons of oranges for instance. THe carbohydrates have to go, or at least be drastically cut down, I make enough money now so I can afford eating something else. I have been eating according to my income that has been low, but now that  things are better, I can try to eat healthier.

 

But the palps come in my wavy day, so do I skip meals or fruit, carbs on the wavy day or every day to be safe ? Remember I have 24 hour waves, so this hell  for me will be back tomorrow.

 

Please, guys,  please answer me on this one. Yesteday was so awful, really awful, I want to do what I can to make things a little lighter if possible.

[[pe...]]

Sky-

I don't have the answer, not sure there's a lone size fits all solution. But I have cut out gluten and dairy, did this about a year ago maybe longer, and it seems to help. I also stay away from stimulants like caffeine and sugar. I eat fruit, but in moderation. This is everyday for me not just during waves.

 

Peace2

[[mr...]]

Sky, I need to get ready for work, but I'll get back to you later on today, on what I do (did) and don't do

 

Mrs.

[[je...]]

Sky-- I had to cut out fruit because it just didn't agree with me, and I had blood sugar issues early in w/d. I think I'd be fine now if I ate it occasionally, but I just choose not to. I juice every morning and I stick with strictly veggies, and have no problems. If you think the fruit is bothering you, I would cut it out and see if you feel better. Also, carbs turn into sugar so I would avoid that too if possible. Lots of protein and veggies. I am so sorry you had a rough time yesterday, I hope today is much better for you 

[[Co...]]

Sky, I recently cut gluten and reduced carbs ....definitely helped benzo belly and inflammation. If you Pintrest I have 2 boards ...one for Mediterranean food ideas and one for Paleo. Paleo is too restrictive for me, but I love the Mediteranan....I eat fruit but more veggies than fruit overall.

....hope you are feeling better Sky...Wishing you a very good day..  coop