Post Benzo Protracted Withdrawal Support Group

[[pa...]]

Hi, pattylu hear, just found this blog, my hubby is 12.3 months off, he'll for him.  I know so many of you bbs have been off so much longer, but I posted this to be able to find blog thru my posts under profile.  I,m so sorry everyone is suffering so much; I see it with my hubby, dear God... There are at times, does anyone hear any of you, us?  Glad I found this blog, I know based on how things have been through this entire thing for my hubby, we will be on this blog w both all of you.  I am also very careful what I post for the newcomers or tearing, it would scare the he'll out of them, the don,t need it.  Wish that colin could have a secure section for longer time suffers from ths that could silently be acessed.  My blessings to all of you.  Hugs, Pattylu

[[st...]]

Hi all,

 

Just venting that I am going through another miserable wave.  Symptoms are: head pressure, blurred vision, dry/red eyes, breathing difficulties, very tight diaphragm, burning left foot, horrible weakness, anger, anxiety, interrupted sleep, chills, tight throat, achiness, etc.  I never know from one minute to the next when the waves will hit.  Mornings are always bad with adrenalin rushes and lately the evenings are just as bad.  I am grateful the mucus has greatly reduced the past couple of months.   

My grandaughter has a birthday party on Saturday and I am keeping my fingers crossed I will have a decent window during the party.

Well, onward and forward for all of us.  One day.......

 

Love,

 

Patty  xo

[[we...]]

thanks for posting. as discouraging as it is, we need to share.  I'm glad you kept on posting on bb for all this time.  Do you know how long your waves ususally last?

[[st...]]

Hi wellness,

 

The am waves usually last 2 to 3 hours.  I had a period of a few short months that i though the anxiety level had gone away but it came back around the 18 month mark.  Weakness (not so much that horrible fatigue) hits around 1pm lately and doesn't let up until 9pm or so.  Anxiety revs up again around 5-6pm.  With the anxiety comes the other symptoms.  Please don't let my long-term effects discourage others.  There aren't too many cases past the 3 year mark.  Also, I took Xanax after having a toxic effect from Levaquin which also affects the GABA receptors.

 

I think it is great that this blog is here for us.  We need to state how these drugs can hurt some of us for quite a long while.

 

Patty  xo

[[sa...]]

Hi Patty,

 

Sorry you're feeling bad.  It's so miserable to be sick for so long and not to know when it will get better.

 

Well, I found out that I do not have a thyroid issue.  Dr. thinks I am bipolar, and I'm starting to think he may be right. 

 

Good news:  I found a couple things that helped me feel better today.  Evening primrose oil, Seraphos, sunshine, and exercise.   

[Guest [ru...]]

Well, ruthie, I am hardly the person to be trying to reassure you as I'm an absolute mess this morning.  But I can say that, yes, if your cns is still messed up it's normal to feel that you're emotions are in a blender.  I feel that way.  I can't seem to think straight, and I'm so scared.  I didn't sleep last night more than about an hour, and I feel like every emotion causes a sensation of swarming bees inside.  I'm supremely miserable.  And as you know, I'm three years out and dealing with a relapse. 

 

Ruthie, I'm sure you will heal eventually.  I know it's taking forever, as it is for me.  But our bodies keep trying to move towards normalcy.  It doesn't feel that way today, but I'm sure it's true.  I don't know you, and I dont' know if you are at all religious, but for me, prayer is a vital lifeline right now.  I feel lost without it.  I still suffer, but not as acutely when I pray.

 

Thanks for your reply Sagemom.  I can really relate to the not being able to think straight & feeling so scared because of that.  It is supremely distressing.  So sorry you are feeling the same way.  Yip I pray everyday, dunno how much it helps though.  It sure doesnt change the protracted wd for me.  I just hope & pray we all come outta this soon!!!

[[sa...]]

Well, ruthie, I am hardly the person to be trying to reassure you as I'm an absolute mess this morning.  But I can say that, yes, if your cns is still messed up it's normal to feel that you're emotions are in a blender.  I feel that way.  I can't seem to think straight, and I'm so scared.  I didn't sleep last night more than about an hour, and I feel like every emotion causes a sensation of swarming bees inside.  I'm supremely miserable.  And as you know, I'm three years out and dealing with a relapse. 

 

Ruthie, I'm sure you will heal eventually.  I know it's taking forever, as it is for me.  But our bodies keep trying to move towards normalcy.  It doesn't feel that way today, but I'm sure it's true.  I don't know you, and I dont' know if you are at all religious, but for me, prayer is a vital lifeline right now.  I feel lost without it.  I still suffer, but not as acutely when I pray.

 

Thanks for your reply Sagemom.  I can really relate to the not being able to think straight & feeling so scared because of that.  It is supremely distressing.  So sorry you are feeling the same way.  Yip I pray everyday, dunno how much it helps though.  It sure doesnt change the protracted wd for me.  I just hope & pray we all come outta this soon!!!

 

What I've learned is that God rarely removes our pain for us, but he can certainly make it easier to bear by sending us support from our friends and loved ones.  I'm starting to do a little better.  Who knows how long it will last, but I'm grateful for it right now.  I hope you feel better soon too, Ruthie.

[Guest [ru...]]

Thanks Sagemom - I replied to you in an private message.

 

Just wanted to share with everyone else that may be having trouble sleeping - last nite I forgot to take my Magnesium & was still awake at 3am  .  Took my Magnesium & the racing thoughts calmed & was slowly able to drift off to sleep finally, so it definitely helps with sleep to some degree. 

 

Hope that helps others who want to try it for sleep problems! (FYI I never had sleep problems before all this). It's about the only supp that doesnt have "paradoxical reactions" for me now.

[[sa...]]

Thanks Sagemom - I replied to you in an private message.

 

Just wanted to share with everyone else that may be having trouble sleeping - last nite I forgot to take my Magnesium & was still awake at 3am  .  Took my Magnesium & the racing thoughts calmed & was slowly able to drift off to sleep finally, so it definitely helps with sleep to some degree. 

 

Hope that helps others who want to try it for sleep problems! (FYI I never had sleep problems before all this). It's about the only supp that doesnt have "paradoxical reactions" for me now.

 

FWIW, I too take magnesium and it does help, especially with the racing heart.  Hope it might help others too.

[[st...]]

How much  magnesium do you guys take daily?

 

Patty  xo

[[Ga...]]

Thanks Sagemom - I replied to you in an private message.

 

Just wanted to share with everyone else that may be having trouble sleeping - last nite I forgot to take my Magnesium & was still awake at 3am  .  Took my Magnesium & the racing thoughts calmed & was slowly able to drift off to sleep finally, so it definitely helps with sleep to some degree. 

 

Hope that helps others who want to try it for sleep problems! (FYI I never had sleep problems before all this). It's about the only supp that doesnt have "paradoxical reactions" for me now.

 

Ruthie,

I take magnesium, too really helps sleep!!

[[sa...]]

I use magnesium powder.  I started at 1 tsp and worked my way up to 3 tsps.  I add vitamin C crystals as well when I drink this.

[[sa...]]

Well, my beautiful day-long window slammed shut.  I didn't sleep very well last night, and now I'm so very depressed and anxious and tired.  I'm so tired of adrenaline, it's the worst natural substance ever.    And I'm so tired of my ears being so congested I want to rip them off, and of feeling so many strange, scary symptoms and not being able to focus on anything else.  I'm soooo sad that I've lost my health.  It means I've lost everything, all that it was important to me to accomplish is now gone.  I feel so empty, everything is meaningless.  :'(  I want my life back.  How many times do we hear that on this forum?  It's seems to be the universal outcry here. 

[Guest [ru...]]

How much  magnesium do you guys take daily?

 

Patty  xo

 

Hi Patty,

 

I take 1 in the morning & 1 or 2 in the evening.  Last nite I had to take a 2nd one cos once again the thoughts were racing/uncontrollable til 4am .  It does loosen you up so to speak, but thats no biggie if the payoff is sleep!

 

Mine is "Nutralife Magnesium Complete" 300mgs per tab.

[[st...]]

Thank you, girls.  I had a window today.    I am just hoping it keeps up until after tomorrow.  The wave was intense and lasted 8 days with no let up.  I secretly keep thinking that maybe after a huge wave that will be the end of it. 

 

Sage, I am sorry your window ended.  How long do your waves usually last?

 

Patty  xo

 

 

[Guest [ru...]]

Thank you, girls.  I had a window today.    I am just hoping it keeps up until after tomorrow.  The wave was intense and lasted 8 days with no let up.  I secretly keep thinking that maybe after a huge wave that will be the end of it. 

 

Sage, I am sorry your window ended.  How long do your waves usually last?

 

Patty  xo

 

YW Patty.  Yeah I have heard that the "windows" of normalcy get longer & longer & the "waves" get shorter & shorter.  It's definitely a positive sign of better things to come for you Patty.  That must be so heartening/encouraging!!!

 

I so wish I felt better.  My comprehension is SLOWLY getting better & I can handle the physical stuff pretty much, its just the mental & emotional stuff that is still pooh.  Feeling so blunted & yet super low & super sensitive on a deeper emotional level    :'(. 

[[sa...]]

Thank you, girls.  I had a window today.    I am just hoping it keeps up until after tomorrow.  The wave was intense and lasted 8 days with no let up.  I secretly keep thinking that maybe after a huge wave that will be the end of it. 

 

Sage, I am sorry your window ended.  How long do your waves usually last?

 

Patty  xo

 

Well, this current wave has lasted for about a month or so.  It's really the first truly terrible wave I've had in a couple of years.  I've had bouts of insomnia and anxiety, but nothing like this.  Stress is horrible. 

[[on...]]

holey moley. i'm crying right now, at least partially out of relief.

 

i'm 12 months benzo free, and still have many symptoms. the research i'd done on protracted withdrawal made it seem very rare, so i have been feeling like a weak hypochondriac for a long, long time. the realization that my pain and process are real, and that i am really strong to have made it this far with very little support or even acknowledgement of my struggle is such a big, big deal. thank you all, for real.

 

i look forward to getting to know more folks here.

 

-pass

[[sa...]]

holey moley. i'm crying right now, at least partially out of relief.

 

i'm 12 months benzo free, and still have many symptoms. the research i'd done on protracted withdrawal made it seem very rare, so i have been feeling like a weak hypochondriac for a long, long time. the realization that my pain and process are real, and that i am really strong to have made it this far with very little support or even acknowledgement of my struggle is such a big, big deal. thank you all, for real.

 

i look forward to getting to know more folks here.

 

-pass

 

It's totally normal to have a long withdrawal process after a CT.  You're not crazy or a hypochondriac.  I was mostly healed a year after my CT, but I've had lingering symptoms for the past 3 years.  I recently had a recurrance of many of the most horrid w/d sx after dealing with some serious grief and stress.  So don't feel bad for having sx only a year out.  This is a good place to be if you need support.

[[ve...]]

holey moley. i'm crying right now, at least partially out of relief. i'm 12 months benzo free, and still have many symptoms. the research i'd done on protracted withdrawal made it seem very rare, so i have been feeling like a weak hypochondriac for a long, long time. the realization that my pain and process are real, and that i am really strong to have made it this far with very little support or even acknowledgement of my struggle is such a big, big deal. thank you all, for real.

i look forward to getting to know more folks here.

-pass

 

Hi OnlyP.  At 12 months off, I don't believe you are considered protracted.  I had significant waves at 9 months and 14 months but was able to write a success story at 18 months off.  I have read that one is not considered protracted at one year out, more in the time frame of 18-24 months.  It might be a matter of semantics.  Nevertheless, it is frustrating to still be symptomatic beyond about 3-6 months, which for some is all it takes, "the lucky ones".

 

Hang in there,

 

Vertigo

[Guest [ru...]]

Another night & I still cant sleep  - it seems to go in cycles these racy thoughts.  Found this & thought others might find it encouraging/inspirational.

 

http://www.benzosupport.org/inspirational_quotes.htm

 

I especially like this one "If you can find a path with no obstacles, it probably doesn't lead anywhere."

 

& OMG I've just realized after reading some of that how INCREDIBLY BRAVE we've all been!!! Like honestly how many obstacles have we all faced? Heaps!!!!!  Tis a no wonder we're wrung out. I think we deserve ALOTTA PRAISE for what we've all come through!!! And still going through.

 

PRAISE & ENCOURAGEMENT are powerful tools...please lets continue to use them ALOT.

 

All the best to everyone for finding your UNIQUE blend of SOLUTIONS that help you.  xoxoxo Ruth xoxoxo

[[Ve...]]

I'm so glad to find this thread.  I'm 11 months free of benzos, and I'm having another wave.  I feel very anxious, especially if I'm not doing something.  Yet, doing something is hard- because I feel so anxious!  It's like a catch-22, and it is VERY frustrating.  I feel extremely tired, and if I sit on the couch and try to watch some TV to relax, I literally start to doze off while I'm sitting up.  As I doze, I get severe butterflies in my stomach and my face flushes very hot, and I get a little dizzy and swimmy-eyed.  All I want to do is lay down and rest, but this makes everything worse.  I'm hungry, but I have no appetite, and this is always a problem for me during a wave- I usually live on oranges.  Well, all I have is apples today and I tried to eat one but it was just too sweet.  I had a small bowl of oatmeal earlier... this wave is not as bad as previous waves, which seem to come in incremenents of about every 6 months now.  I had the flu last weekend, a terrible flu, and I think all the rest and the neocitran (bad idea!) sent me into a wave.  Now I feel like I need to exercise off all the excess energy, but i feel too puny to exercise.  I'm just so glad to know that I am not alone.  It's easy to go on with life forgetting that I'm still in withdrawal and that it is still normal to have an occassional wave- it seems like this should all be over by now.

[[on...]]

hey vertigo, that's good perspective. i suppose i am still early in the game.

 

something that is problematic is that i live at home with my folks (moved back in when health got very poor a couple years ago), and they are of the mind that i've drawn my benzo withdrawal out to get attention or out of laziness or dramatics. so i've been hearing since i was four months benzo free to stop making excuses for myself and to pull myself up by the bootstraps, even as i am taking on more than feels realistic a lot of the time.

 

at the same time, my pdoc has never really acknowledged my withdrawal symptoms as being at all related to benzo withdrawal. and mainstream media sources do acknowledge that people experience bad withdrawal for weeks, or months in extreme cases, but generally do not normalize w/ds at a year +. i have really been struggling with feeling like it's all in my head and that i'm a bad person because i just can't get it together (by others' standards).

 

even when i jumped from 1mg of klonopin i didn't take a break from my life for even a day. didn't get help with my son, didn't get any medical support, didn't even tell any friends or family. i did it completely alone, while single parenting, cooking, cleaning, grocery shopping, helping friends with their children, etc. i think i have some serious grief about going through something so hard with no acknowledgement or validation that it was even happening. i am ready now, finally, a year later, to validate myself, and to say, "this is what's going on for me. it's real. i'm not making it up. you don't have to believe me and you don't have to help me, but i am going to find the help i need to get healthy. i have the right to do that."

 

this feels really big and emotional and hopeful for me.

 

-pass

[[sa...]]

hey vertigo, that's good perspective. i suppose i am still early in the game.

 

something that is problematic is that i live at home with my folks (moved back in when health got very poor a couple years ago), and they are of the mind that i've drawn my benzo withdrawal out to get attention or out of laziness or dramatics. so i've been hearing since i was four months benzo free to stop making excuses for myself and to pull myself up by the bootstraps, even as i am taking on more than feels realistic a lot of the time.

 

at the same time, my pdoc has never really acknowledged my withdrawal symptoms as being at all related to benzo withdrawal. and mainstream media sources do acknowledge that people experience bad withdrawal for weeks, or months in extreme cases, but generally do not normalize w/ds at a year +. i have really been struggling with feeling like it's all in my head and that i'm a bad person because i just can't get it together (by others' standards).

 

even when i jumped from 1mg of klonopin i didn't take a break from my life for even a day. didn't get help with my son, didn't get any medical support, didn't even tell any friends or family. i did it completely alone, while single parenting, cooking, cleaning, grocery shopping, helping friends with their children, etc. i think i have some serious grief about going through something so hard with no acknowledgement or validation that it was even happening. i am ready now, finally, a year later, to validate myself, and to say, "this is what's going on for me. it's real. i'm not making it up. you don't have to believe me and you don't have to help me, but i am going to find the help i need to get healthy. i have the right to do that."

 

this feels really big and emotional and hopeful for me.

 

-pass

 

Good for you!  Part of healing is acknowledging the reality of what you are going through.  Getting support and validation like this is a huge step in the right direction. 

[[Ve...]]

@Only.passenger, yes good for you!  I can't imagine doing this while living at home.  I was raised by very old-school grandparents, and though my grandfather has passed away, my grandmother still has a hard time understanding my anxiety problems.  As a child, I would complain of heart palpitations and they would say, "Well what do you want us to do?  Call an ambulence?"  They were of the mind that I should just "buck up" and get over it.  Well, some things aren't that easy.  It's okay that they don't understand, your parents and mine, all that matters is that WE understand what is going on with ourselves, and that we are patient with ourselves and allow ourselves to heal.  Wishing you the best.  :-)