6-12 month thread....

[[No...]]

It feels good to be part of the 6-12 month crew ! 

 

Even if my sleep is still messed up and usually it amounts between 4 and 6H30 in (waking up 2 to 4 times, usually to pee) it's still a blessing being able to not feel everyday on the verge of dying as I used to.

 

I started walking 1Hours+ a day since last months and I noticed great improvement. Now my next goal is to reach the 7hours + sleep average and less broken sleep and being able to weight train and that would be FANTASTIC !

 

I hope a lot of you here are seeing more and more improvements !

The only advice I can give is stay away from all kind of meds (that's what I do now) and exercise (walk).

I noticed that while I was walking i usually get to a phase where I just feel numb and "great" like the first benzo feeling when you're not accustomed to it, or like the feeling of exercising endorphin rush.

 

I wish you all strength and courage to continue this healing journey ! 

[[Gr...]]

Hey Guys

 

6 1/2 months off Xanax now.

 

And sick a lot. Like 5 out of every 7 days. Only got one window in six months, for 10 days last month. Now back to 5 days sick every week.

 

Benzo flu, hangover, and anxiousness all the time.

 

I thought 6 months in, that this was supposed to 'get better" by now...

 

I thought I did everything right,,long slow 10 month taper...nope. This sucks. When do we turn that corner.

 

I'm sicker now then I EVER was when I was on Xanax.

 

Yay! I'm 'drug free'..

 

But who cares? So what! if I feel like shit every day and have no life.

I'd rather go back on a drug but be able to function. This is bullshit.

 

I'm sick of being sick. This is WAY worse then any 'problems; I ever had when taking Xanax.

 

But,  I guess I'll continue to wait. and wait. and wait. and wait. and suffer. and suffer. and suffer.....

 

Hey, JACD

 

Hang in there, because it definitely gets better.  That was my fatal, fatal error the first time I stopped benzos!!  I gave up and reinstated.  I said exactly what you did, why shouldn't I take them if I'm going to feel like crap.  If only I had waited, hung on.  Instead, I reinstated, and it was another four years before I was able to get off, and by then I had kindled and it was exponentially harder!  So hang on, you're getting there.  Benzo withdrawal is definitely not for sissies.  When you get there, healed, you're going to feel amazing!

[[...]]

Thank you guys!

 

Love to you all!

 

Well, I'm still sick. Again.

 

Today marks the start of Month 7!!

 

I've been so sick lately , well for 4 1/2 months. Benzo flu really bad, day after day, chills, aches, scared, sick, fear, panic, cold, hot, vibrations, burning muscles, on and on. Back to back days, Week after week.And all this started 2 1/2 months AFTER I jumped. So, even though I've been off it for starting 7 months today, nothing really hit untill 10 weeks off. But since then, I'm a mess.

 

I'm sick , REALLY sick, 5/6 days out of every 7 days. Benzo flu/hangover sick.

 

I've been sick 20 out of the last 28 days this month. In April, 19 days out of 28 days, in March 18 days, out of 28,In Feb 20 days out of 28. In Jan 12 days sick, and Dec 12 days sick.

 

What is this?? Am I healing? or not? Is the fact I'm getting hit day after day, month after month with no let up a 'good' thing? Does this mean it's 'working' or 'ending"?? This is madness.

 

Any advice?

[[MT...]]

Hi 6-12 monthers. I hit 24 weeks on Wednesday but I won't hit 6 months by the calendar until 6/14. Like most of you I really thought I'd be through this, or at least be remarkably better, by now. I'm trying to notice what is better and what went well, though. For much of the first months I didn't know how I could possibly survive the day, let alone the week, month, and so on in order to survive to 6 months. So just making it to this point feels like a bit of an accomplishment

 

My worst symptom is insomnia. I only sleep when I take medication (and I mean that literally, zero sleep the other nights) so for most of these months I've only slept 3-4 nights per week. My sleep on the nights I take meds isn't that great, very broken, but it sure beats zero sleep night after zero sleep night. That's miserable.

 

I'm also still struggling with cog fog, extreme fatigue, some weakness, food cravings, burning skin sensation, tingling/feeling of wetness on my face, tinnitus, irritability and anxiety and depression sprinkled in.

 

I've had a few windows of decreased intensity of all the symptoms but insomnia of hours to a day and then some waves that go on for longer. I'm currently in about a month long wave (a few breaks here and there but overall everything worse).

 

I really want to believe that I'll see some progress soon with sleep and that by a year all of this will feel tolerable. I wish you all strength and healing.

[[...]]

Hi 6-12 monthers. I hit 24 weeks on Wednesday but I won't hit 6 months by the calendar until 6/14. Like most of you I really thought I'd be through this, or at least be remarkably better, by now. I'm trying to notice what is better and what went well, though. For much of the first months I didn't know how I could possibly survive the day, let alone the week, month, and so on in order to survive to 6 months. So just making it to this point feels like a bit of an accomplishment

 

My worst symptom is insomnia. I only sleep when I take medication (and I mean that literally, zero sleep the other nights) so for most of these months I've only slept 3-4 nights per week. My sleep on the nights I take meds isn't that great, very broken, but it sure beats zero sleep night after zero sleep night. That's miserable.

 

I'm also still struggling with cog fog, extreme fatigue, some weakness, food cravings, burning skin sensation, tingling/feeling of wetness on my face, tinnitus, irritability and anxiety and depression sprinkled in.

 

I've had a few windows of decreased intensity of all the symptoms but insomnia of hours to a day and then some waves that go on for longer. I'm currently in about a month long wave (a few breaks here and there but overall everything worse).

 

I really want to believe that I'll see some progress soon with sleep and that by a year all of this will feel tolerable. I wish you all strength and healing.

 

Hey MTFAN

 

I'm in a month long wave too. This sucks. I'm at the first day of month 7 today.

But all of month 6 leading up to this was hell. I've been sick since Feb,really. Benzo flu sick. For 4 months off and on. But mainly very ON.

 

Hope this ends..

[[Li...]]

Hi all... I'll be 8 months out next saturday.  I've had a few windows since jumping in October, but not any lasting for more than a couple of days.  I'm used to having symptoms every day to some varying degree.  The worse issues have been digestive with upper stomach pains, burning, intestinal cramps,  and going on three weeks now I've had the stomach cramps and can't eat anything but bland liquid to pureed food.  Anyone else having issues like these this far out?  Misery loves company I guess..just looking for encouragement.  Thanks....

[Guest [Ma...]]

Hi Lilly,

 

I will be 8 months on Friday . I m not having as much physical sxs ... But struggling with " brain freeze " ...or maybe better explained as a brain tugging when trying to articulate thoughts ... They are there , just can t get them out ! Not so bad in the morning but begin to decompensate as the day goes on. Do you have this as well or anyone else here ?

 

Got you on my praylist Lilly 

[[Li...]]

Hi Mary... yes I have those, only I didn't know it was called brain freeze.  lol. I didn't know what to call it, but I try to focus on something like a question someone asks me, and the more I try to get the answer from my brain, the more I feel my brain warping or folding.. It's very unsettling.  My husband and I were trying to recall something that happened yesterday and I really struggled with it...  I had to move on and forget about it for awhile.  How naive of me to think I would be doing so well by now, but I can still hope!  I pray we both improve.    I so appreciate your prayers!!

 

Lilly555

[[MT...]]

Lily, I used to have a lot of GI issues-pain, bloating, nausea, lack of appetite and diarrhea. I still have all but the nausea. Mostly the diarrhea I get after my nights of zero sleep. It's all very distracting. We're sick but we have to go on with our lives. Ug.

 

Brain freeze. Yes! I have lots of trouble with word finding and recalling memories is very messed up. Sometimes I feel like I have a touch of amnesia. It's hard sometimes not to feel totally stupid so I have to remind myself that it's wd and insomnia not being brain damaged permanently.

[[ra...]]

I'm just about at 9 months! Depression and anxiety are so high. I would really love to hit a window. But I am grateful to have made it this far.

 

I had GI issues for a month or two, but I've been doing pretty well lately. I hope you don't have to suffer that for too much longer, Lilly!

 

Constant butterflies in my stomach, head pressure like I've got a bad head cold, and dizziness/mild brain zaps. My cognitive issues are much, much improved but I still find myself struggling to search for the right word or to remember something that just happened. I'm still trying to taper my AD so I don't know how much of this has to do with that. It's all so confusing.

 

Love and hugs, fellow 6-12 monthers. I hear a lot of people saying they noticed major improvement after a year so I feel like I'm holding out for that! While also not trying to get my hopes up too much and just be grateful for each day as it comes. Each day is another day of healing.

[[MT...]]

At least we're more likely to see improvement in these coming months than the 6 that just passed. Every day is a little bit closer.

[[Li...]]

Thanks MTfan and repunzelblue... :-)    I agree that it's best to be on the back side of month 6, than just beginning it.. I guess I won't be surprised in the future if I have a long window, then am slammed out of the blue.  But I have never had a window that lasted beyond 2 days, and even then the nights could be bad.  But I'll take a window no matter how short lived they are... 

 

I was on clonazepam for ten years... within that time was given strong chemo drugs.  So my immune system is not as good as the next, but withdrawal from clonazepam is much worse than anything I ever suffered during chemo. 

 

I'll be a year out in October, and I'm praying that by then I'll see lot's of improvements... I pray that for everyone here as well...

[[ra...]]

MTfan, you're right! I'll try to keep that positive mindset.

 

Lilly, thank you. I'll definitely be hoping for the same for you!

 

When I read about others having windows and then getting slammed with bad waves again I'm scared of that happening to me. But I feel like I've had no windows. Maybe one or two that lasted for half a second? I do think I am getting better, but it's so gradual I mostly rely on my parents to tell me that I seem to be doing better. Thank Heaven I have them! I'll have to find a way to just accept my process as it comes.

[[Li...]]

Family and friends who support you are so vital through all this... I'm glad you have your parents too.   

[[ra...]]

Thank you, Lilly! You're so right about supportive family and friends. And supportive BenzoBuddies.

[[MT...]]

Thank you, Lilly! You're so right about supportive family and friends. And supportive BenzoBuddies.

 

Definitely. Going through this without family, friends and BB would be even more awful. I often feel so impatient to be better that it's easy to get discouraged and not notice progress. It seems to me like I'm more exhausted than I was before hitting 20 weeks. It feels like my body is wearing down.

 

Lily, I've read of other BB who've fought cancer and done chemo and they also say benzo wd is worse. That's so shocking. If only people knew this they wouldn't get on these meds.

 

Hang in there buddies.

[[ra...]]

MTfan, I know how you feel. I am sooooo tired all the time and I try not to think "how much longer will this take?" because that makes me feel hopeless. I know we can handle it if we just take it day by day!

 

I agree that it's totally shocking to hear people comparing fighting cancer and benzo wd. But it does kind of make me feel like it's OK that I'm having such an incredibly hard time with it!

 

Another day closer to our goal. Way to go, all.

[[Li...]]

Yes it amazes me that people are going through withdrawal and a debilitating desease too. Going through divorce.. loss of loved ones.. financial problems..etc.. everyone on this site is in my prayers every night. So many souls suffering, and just think of all the people who are in torment and don't realize it's their medication causing it.

[[MT...]]

Being on BB there's so much evidence of the strength of the human spirit. While it's sad that there's so much suffering, it's also inspiring how folks carry on and encourage each other. It's simply amazing how many of those who've gone before us still share their gifts with us. I'm honored to be a part of all of this and here with each of you :smitten:

[[re...]]

Hi all...just wanted to chime in, love all the positive people on here!...I am hitting 6 mos. on June 12th...I too thought I would be done with this by now, but low and behold new sxs keep popping up...recently have these weird spells, not really dizzy, but things look like they are on an angle, like rocking back and forth?...really scary, didn't have that in acute...my eyebrows look uneven (one looks higher than the other)..haha kinda funny really...I hate the fact that you can't trust yourself to feel good from minute to minute...how do people work and then go into a wave?...I would just have to run away and go back home!...scary..I have to get a job but I don't trust myself to be able to do it for more than an hour or two... :'(

[[MT...]]

Hi all...just wanted to chime in, love all the positive people on here!...I am hitting 6 mos. on June 12th...I too thought I would be done with this by now, but low and behold new sxs keep popping up...recently have these weird spells, not really dizzy, but things look like they are on an angle, like rocking back and forth?...really scary, didn't have that in acute...my eyebrows look uneven (one looks higher than the other)..haha kinda funny really...I hate the fact that you can't trust yourself to feel good from minute to minute...how do people work and then go into a wave?...I would just have to run away and go back home!...scary..I have to get a job but I don't trust myself to be able to do it for more than an hour or two... :'(

 

Redfox, I'm just 2 days behind you. This is a crazy process and you're so right with how hard it is to trust yourself. Working is rough. I can't imagine working more than a couple of days a week. You would probably surprise yourself with what you could do. You've got guts to have made it this far.

[[re...]]

Thanks MT....when I feel good I think, "oh I could work, no problem", but then when a wave hits I feel like I could never get up and go to work....its just so frustrating right now....do you work?....what are your major sxs that bother you?....

[[Li...]]

Hi MTfan and redfox...    I could work from home if, and I say if I didnt have a spell of cog fog, and was able to concentrate.  And you have to have a clear head to work.  And if the agoraphobia set in it would be like a combat zone.. throw in dizziness and upset tummy and I'd go home and lick my wounds.. :-(  Really if this was recognized as a true disability, (which it isn't recognized)  we would be getting help with all of this.  There would be paid leave of absence to recooperate, etc.. I get angry that hardly anyone even acknowledges this as being a true condition.  Wouldn't we all rather be feeling good and living life to the fullest, instead of becoming hermits with almost constant misery?  Who in their right mind would fake all this??  I'm so glad that people here understand. 

 

Redfox... the thing I hate is when going down stairs I feel as if there is no solid ground underneath me.  I have to go slow and hold on for dear life.  Everyone else racing by me.. It's quite embarrassing to say the least.  The steps going down from our front door are only 6 to get to the sidewalk, but every time I go out there to go somewhere, I feel like I'm descending the steps of Chichen Itza in Mexico... yeah I had to look the spelling up.. lol.  That would terrify me to climb up or climb down that without being in withdrawal, but now?  They'd have to send a helicopter to come and get me down.  That's what it feels like when I go out my front door.  Thank goodness there is a railing! 

 

So we keep pressing onward... we're one day closer to less symptoms!! 

 

Lilly555

[[...]]

Lilly555

I too had chemo but with a DPD deficiency - look that one up.  Another instance where the FDA fails us miserably by not requiring testing prior to administering 5-FU.  Anyway that's what landed me on benzos BUT my dibilitating reaction to the chemo was not as bad as the withdrawal from the benzo.  That's how bad benzodiazepine withdrawal syndrome is.  So for what it's worth fellow suffers yes you have suffered or are suffering horrors that  the medical community refuses to recognize as it is of their on making and an insult to themselves which cannot be borne.  You are all highly commended for getting thru this horrific journey with so little support or understanding.  Someday these drugs will be exposed for what they are in the meantime we have to save ourselves and do what we can to inform and save others. 

[[MT...]]

Lily, jth, and Red, it seems most people can't work during wd. For me it has been extremely difficult and stressful but also helpful and rewarding at times. I just work two days a week and it's sedentary stuff that I've got lots of experience doing. Some days I white knuckle it. I totally agree that going through wd should be supported in some way. It's horrible that this is worse than chemo.

 

You asked about my symptoms, by far the insomnia is my worst symptom and one that I've made no progress with in all of this time. I've also had all of the GI symptoms (but they're improving). I also have fevers, rapid heartbeat, palpitations, adrenalin surges, cog fog, some h/a, hot and cold, some anxiety and depression (depends on the day and week),  burning skin and a weird face/scalp paresthesia (it feels tingly and like it's wet). The last two fluctuate quite a bit.