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The Setback Support Group


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Hey Guys.  I am currently having a setback, and maybe you are too, or you have.  I wanted  space to talk about it.  My current setback is from having the flu plus overdoing it on a family trip for my husband's grandma's funeral three weeks ago.  This is not my first setback, but I don't remember how long it actually took to get better from my one in December.  I am keeping high hopes that this is just temporary and hopefully will not take too long for me to get back to my lovely windows. 

 

Anyone else having a setback?

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I am but its from grief and it's been going on for about 12 months and seems to get worse not better.....I was about 85-95% healed before the death that preceded this setback...Hope yours is only a short while..

 

Alan

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Thanks Alan.  I'm sorry you are having a setback from grief.  I think our emotional state can really influence setbacks.  I'm realizing that when I get stressed sometimes, I will get sick and have a complete setback over it.  Sorry for your loss Alan.  :hug:
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  • 2 weeks later...
I am about 3 months into a setback after 8 years of feeling fully healed.  I had know idea setbacks were possible, so you can imagine my panic and confusion when it was triggered.  I been to countless doctor appointments trying to figure it out.  Now I get it.  In some ways understanding it gives me some peace of mind, but for the most part it has me pretty freaked out.  The anxiety is intense.  There’s the anxiety that is part of the setback and then there’s the anxiety over the setback.  Together it’s pretty overwhelming.  I don’t really know what to expect in this process or how to manage it.  It helps to read other people’s experience and how they are coping.  It makes me feel less alone.
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Wow Lee, that's intense to have one 8 years later.  What are your symptoms of your setback?  Do you think anything specific caused it? 
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It was the perfect storm of vulnerabilities that came at one time that led me to have a panic attack.  I was sick with the influenza virus, I was on day 3 of a high fever, exhausted and taking Motrin and Tylenol so I could still go to work (dumb I know). I was exhausted and to top it all off I got my period (and I’m starting menopause so my hormones are whacked out). I got up and as I was getting ready for work my body had enough and I had a panic attack. The panic wouldn’t stop. I think the receptors that were effected by the benzo are left vulnerable and I think the panic attack nailed those receptors.  My symptoms are exactly like my symptoms in withdrawal almost to the tee.  I have severe anxiety that I can’t control, the nerves throughout my body are extremely agitated.  I’m having difficulties eating and sleeping.  I’m obsessing and OCD thinking.  Depression is starting set in.  I feel disconnected from normal life and everyday experiences.  So far the adrenaline rushes have stopped but I started Buspar and that might be why.  Overall Buspar has not been effective because this is not GAD.  This is a whole different beast.

 

I’m sorry you’re suffering too GreenCup.  I hope you are feeling better.

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Out of curiosity,  what is the difference between a wave and a setback?  I have periods of feeling better than ever in my life (mentally and physically), then waves crash in, and I feel like I'm dying, minus the mental symptoms mostly (just some OCD, which I can tolerate fine).  The past ten days have been quite hellish,  but thankfully windows get sprinkled in throughout the day to remind me that I'm getting close®.

 

Hang in there buddies.

WR

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To me a setback is a return of symptoms after feeling healed or a long period of time without symptoms.  A wave a bad days/weeks that happen with withdrawal or a setback.  That’s my interpretation - I don’t know if it right or wrong.
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To me a setback is a return of symptoms after feeling healed or a long period of time without symptoms.  A wave a bad days/weeks that happen with withdrawal or a setback.  That’s my interpretation - I don’t know if it right or wrong.

 

Thanks, Lee.  I guess I've yet to experience a setback,  bc waves continue to roll in on the regular.  My longest recent wave was 3 months, but thankfully ended with a big boost in my overall quality of life.  This last wave has been horrendous,  left me angry, sad, discouraged, worried.  I know everyone here understands.  I'm so tired of this fight.  But onward we go. 

 

Wishing you all the best. 

WR

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I wouldn’t get caught up on the words waves or setbacks. They are both periods of suffering so it doesn’t really matter what you call it.  I am definitely sad, discouraged and worried too.  But I had many good years in between and hopefully I’ll get many good years after this. What I’ll take from this is that I need to take care of my body and my mind. I probably wasn’t doing a very good job of either.  I need to make some lifestyle changes especially because I’m getting older and I really need to.  Having a support system and good friends (not just acquaintances) is important.  I’m trying to reconnect with old friends and making new ones.  Especially women my age who are in the same phase of life as me.  The struggle is horrible and the fight is exhausting.  My therapist wants me to work on experiencing joy in life despite the struggle.  That we can have both. I’m an all or nothing kind of person so that’s really hard for me.  But I’m trying because onward we go...😊
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Really nice, thoughtful post Lee. You sound pretty sane to me and thoughtful was well. None of this stuff is easy for many people. I envy those who don't go through a bad wd. But I did and you know what? I am SO much healthier and happier now, being of all psych meds. I never really had a psych problem. Turned out all my old  depression and most of my old anxiety was created BY the benzos and ADS I as on. I still find this truly amazing and horrible, all at the same time. I may be a nurse, but I had NO idea this could happen. Well, now I do. And wont ever make the same mistake again.

That this can and does happen, over and over, does not say much for how our governments regulate these drugs. That makes me feel - well, just awful.

Keep on going no matter how hard it is. The end result can be quite amazing, just as it was for me.

east

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Hahaha. Thank you east, I wrote it at a sane moment I was having in all this mess.  Since this setback started I spend most of my day an anxious/CNS disaster.  I am starting to get calmer nights now when I seem a little more sane.😂
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I think waves and setbacks can overlap.  For me, I used the term setback, mostly cause I had been doing SO WELL, in comparison to when this wave or setback hit.  It really surprised me.  Maybe these are just how my waves go.  For me, my timeline, went,  my stressful week was one month ago, then I was okay for a week after that, and then boom,  slammed with a flu, a fever, and throwing up all the time with muscle aches.  I wouldn't be surprised if the flu you had Lee, was part of the setback, as that's how it seems to happen to me. 

 

So, I'm coming on three weeks since I first started experiencing this wave.  Things are better but I still feel pretty exhausted.

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Lee,  I want to express first how sorry I am to hear about your setback.  It wasn't until now that I read your story, understood what happened.  I can't imagine how scary/discouraging this must be for you.  I think something similar happened to Don Killian (huge supporter in the benzo community for years, and then had a terrible setback, that he's slowly recovering from).  Not sure, but maybe it would be helpful to talk with him, and perhaps he could use the support as well.  I know his site is down, so not sure how to reach him, but others on BB may.  I'm so glad you came back to BB, to access support.  I imagine it wasn't easy, and that some here may not want to believe you, due to their own fear.  I just you to know that I do, and I'm rooting for you. 

 

I also relate to what you expressed about needing to LIVE despite the horrible symptoms.  I'm trying very hard to do this as well, but it's against my nature, big time.  I am one to hide away when feeling vulnerable and broken. but I'm getting better at this, and I think it has been helpful. For example,  I've planned my entire summer as if I'm well. Pushing through the waves and symptoms, reaching out to the world, even sharing my struggle with them.  Ha, I've even planned a vacation to Hawaii with my husband's whole family in August, then immediately heading to the Midwest to visit with my own family for a week.  Peppered in there are three weekend trips to see friends, camp, etc.  And host my family from the UK in Brooklyn.  WOW.  When I'm in waves, I still get very sick, but I know I'm healthy/happy/safe underneath the symptoms, so I'm going to do it, hell or high water.  Is that the right thing for me?  I honestly DO NOT KNOW!!  But we'll find out.  I had a glorious window a couple of weeks ago at a weekend camping trip with 50+ people I know from the art community here.  I felt better than ever in my life.  People that knew me before, were in shock at how transformed I seemed.  Then I came home, and SPLAT - back in extreme hell, wanting to curl in a ball all day and moan. 

 

Good to hear from you too, Eastcoast.  I've read your supportive posts to others, and I'm so grateful you're back here, rooting us on.  I relate to your story as well - years of feeling broken from these drugs, never knowing the full extent until getting off of them.  I'm so glad we are all doing this!! Life is too short to be drugged, suffer needlessly. 

 

Greencup, I'm holding you in my thoughts as well.  These waves are brutal.  Having these breaks from it all, tasting freedom, then getting pulled back into hell, is just brutal.  They are happening for a reason though.  This truly is what healing feels like, IMO.  I know this to be true (for me), b/c when the really bad waves hit, I come out of them with a higher baseline, and even better windows, every single time.  I really hope it breaks for you soon.

 

Hang in there buddies.

 

Best to all,

WR

 

 

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NYCWaverider - I am trying to plan summer activities that keep me busy and among people. Being social really helps and is a natural distraction. I’m a teacher, so I have my summer off and that’s a blessing and a challenge for me this summer.  I have a vacation with my husband’s family coming up in a week.  I think being with them in a different environment will be helpful.  We’ll do a lot of outdoor activity. I’m also a little nervous too. 

 

I think I am actually trying to do too much to manage this setback. I’m starting to feel stressed about having something to do everyday. I need to be ok with downtime.  I remember back in withdrawal that I feared down time and then at some point down time became good again.  I’m looking forward to that happening again.

 

Hang in there everyone.  We’ll get there!

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