Big Setback at 2 Years Off - Need Feedback from Long-Timers

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I am approaching 24 months off next month and I am in the middle of the longest and most intense setback I have had yet.  Ever since March of this year, I have shown marked improvement across the board, with a lot of "almost normal" days and short, less intense waves.  About 6 weeks ago, I started noticing a few symptoms return that had gone away over a year ago.  Ever since then, I have had one bad day after another, with almost no breaks. 

 

I am just wondering if any of the people who have been off for a while, say 18+ months, have experienced anything like this.  I have not changed anything in my diet or lifestyle that would have brought something like this on and it's really beginning to freak me out. 

 

Ryan

[[Pa...]]

Hi Ryan,

 

I'm sorry to hear you're still getting hit with symptoms, stoneyco (Patty) has a blog in Buddie Space and she's kept fairly good records of her recovery, which has been long and tough.  She might be able to give you some input to your questions if you stop by her blog. 

[[...]]

Thanks, Pam.  I am hoping it's the "storm before the calm" or the "darkness before the dawn" or whatever the cliche du joure is.  It just seems more relentless than any wave I've ever had.  Ugh...

[[sh...]]

Ryan, I passed 24 months yesterday and feel like I am back to the worst state so far.  Not trying to scare anyone but things were improving and now I feel like its such a huge set back.  I know its all individual but I feel so alone.  Lets hand in there together. 

 

Sharil

[[Lu...]]

Wow...I am glad you posted this.  I am at 19 months off and am also going through a major setback.  It really sucks because I had a relatively long period of no symptoms.  Its now been at least a month of constant symptoms with little break.  It was rough before but this seems harder because I thought I was past the issues.  All I can say is keep going and don't let it get to you.  It will pass.  Good luck.

[[sw...]]

I'm sorry you guys are having a rough time after such improvement.  This is something I contemplate a lot when I tried to figure at what point I'll be able to safely return to work (I work in a high demand high brain power profession).  When you say you're being hit by a wave this far out, if you don't mind my asking, would you say that it's so bad that it severely interferes with your ability to do work?

 

I hope you all feel better, soon.

[[...]]

I'm sorry you guys are having a rough time after such improvement.  This is something I contemplate a lot when I tried to figure at what point I'll be able to safely return to work (I work in a high demand high brain power profession).  When you say you're being hit by a wave this far out, if you don't mind my asking, would you say that it's so bad that it severely interferes with your ability to do work?

 

I hope you all feel better, soon.

 

For me, it definitely effects my ability to work.  I am not completely incapacitated like I was at the beginning but it is very difficult to focus when I am feeling this way.  I am very fortunate that I have a flexible, low pressure schedule right now so I can work around these symptoms.  These flare ups at 2 years out seem to be much more common with those of us who tapered too quickly.  I would not worry about this if I were you.

[[zo...]]

I got hit HARD at 21 months off. I was doing fine, was almost symptom free although still sensitive to stress. However, at 21 months off I flew half-way around the world and spent a couple of weeks on vacation. Really did a lot and enjoyed myself, but I think I over stressed myself. One day after arriving home and foggy from jetlag all hell breaks lose. It felt like my initial c/t almost. Its been three months since, im just now getting back to normal. NO MORE traveling for a long time for me!! Our bodies are still sensitive, even when you have felt fine for several months DO NOT overdo it. Slowly work back into it, I learned the hard way.

[[dj...]]

I too am at 22 1/2 months out from basically a cold turkey of 5 months usage of 2MG per day Xanax XR.  plus some lexapro for 7 weeks.  Quit them both roughly a week a part. 

 

I'm beginning to think that given I'm this far out and still feel quite ill (though improved for sure), that I have some sort of permament damage.  That this is as good as it gets.  I had a meeting on Monday of this week that I felt quite well for.....not 100%, but better than I have for the past two days.  I've been patient, but the constant back and forth and the amount of time this takes......I'm ready for this to be over and to write a success story.  I just think there won't be one for me......I think there is damage. 

[[Je...]]

Ryan,

please don't feel alone, I am almost 19 months off, did a very slow taper and yet am dealing with my worst wave yet. I too am extremely frustrated as I have no idea why this would happen so intensely this far out. It feels like I'm at the beginning again ;( I haven't changed anything in my diet or incorpirated anything new so I know it's not that. This has absolutely no rhyme or reason. Currently I'm dealing with slight vertigo, nerve pain all over, twitching, depression and restlessness. I pray to God this ends soon. I hope you know you're not alone. I truly hope u feel better soon.

Jenna

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I too am at 22 1/2 months out from basically a cold turkey of 5 months usage of 2MG per day Xanax XR.  plus some lexapro for 7 weeks.  Quit them both roughly a week a part. 

 

I'm beginning to think that given I'm this far out and still feel quite ill (though improved for sure), that I have some sort of permament damage.  That this is as good as it gets.  I had a meeting on Monday of this week that I felt quite well for.....not 100%, but better than I have for the past two days.  I've been patient, but the constant back and forth and the amount of time this takes......I'm ready for this to be over and to write a success story.  I just think there won't be one for me......I think there is damage. 

 

Don't feel this way my friend. There hasn't been any documentation that benzos can cause permanent damage, at least that I'm aware of. Possibly there can be long term cognitive damage but nothing like the symptoms you're experiencing.

[[ta...]]

19 months off and I thought I was healed. The past few weeks had been great. Stress with the job picked up and now I have the tingling back, as well as sore muscles and something else I only had briefly early on. I can't focus for long when reading or on the computer or I get a wobbly sensation like someone pushed me from the side. Anyone else have this one?

[[dj...]]

My previous response in this thread did not mention that I had felt I was improving, and since mid september i've been in a wave that feels like the beginning.....not quite as bad I suppose, but things had returned that I thought were gone.  Now here it is November and I don't feel as bad as I did in September, but I don't feel as good as I did say in August.  I don't know what I've done, but from the responses in this thread it sounds kind of normal.  It's so hard to be patient when I've waiting so long.  And I have children that I miss being there for in my previous capacity.  I hate feeling sick.  Yes, tarheel, when I'm in a stressful situation I feel slightly dizzy.  This was not happening at all a few months ago....nothing has changed as far as the situations i'm in.  For example, I have a teenager at home.  he's a good kid, but as teenagers do, sometimes he speaks a little rudely.....A few months ago this situation wouldn't have done anything, I would have addressed it.  But now if this happens, I can feel my heart flutter, feel dizzy, etc....just from the emotion of a normal situation.  Or if i'm asked a question at work by my boss.  I'm not nervous or anxious, but I start feeling like I am....dizzy, shaky, etc.  This was not happening a few months ago.  It's like the beginning almost. 

[[dj...]]

So I try not to go looking for trouble, but today on the way back to work after lunch , I tried not wearing my sunglasses.  It is very sunny here today.  Sitting at my desk, my left eye began twitiching and my head feels evern worse.  It has to be directly related to the sun exposure.  Feeling frustrated, I went to the internet to find some encouraging stories.  I stumbled across this :  http://www.benzo.org.uk/stories.htm

 

I'm now extremely worried, as most stories I read are from people that after several years off the drugs have not healed completely.  Anyone else worried that if by 2 years you aren't healed that complete healing is probably not going to happen?

[[He...]]

Ryan,

So glad you posted this. I am a week or so from 20 months out and have a return of sxs too.

I have been traveling and am now doing my turn taking care of a family member with a debilitating illness. I do think I am stressed and that accounts for the return. It is very disconcerting to say the least! The head pressure,anxiety, morning terror, DR/DP, inability to focus, cog fog and sensitivity to everything I ingest is all back!!!

 

As we always do, I began to fear these sxs point to some disease because I am so far out!

Do you have new or added stress in your life?

[[st...]]

Ryan (and all),

 

I got slammed at the 18th mark off date.  A few of my symptoms didn't return but I was very sick from many symptoms.  Some of us protracted members have to continue using our coping skills to get through this long process even though it is so hard at times.  The last year has gone by pretty fast so don't be disheartened by the length of time it takes to heal.  I am 38 months off Xanax (also had a toxic reaction to Levaquin thrown in the mix) and although I still have symptoms lingering I can function much better than at the 2 year mark.  Our patience off BIG TIME!  Hang in there, buddies.  It WILL be OK.

 

Love,

 

Patty xo