6-12 month thread....

[[Li...]]

Jth...  I'm sorry, that had to be difficult to get through with the DPD defficiency.  That's something I've never heard of before.  Chemo in itself can make changes in our blood levels, couple that with benzos, and you've got quite a mess. 

 

MTfan.... I've had and still have most of what you mentioned.  At this moment my upper stomach feels warm and burning.  Yesterday I had a spell of vertigo...I had to walk slow and hold on to walls, furniture... it lessened by the evening.  What a crazy time we all have with this!  I know I say this a lot, but I mean it... you're all in my prayers...

[[Be...]]

Hi,  I'm 8 months off Remeron and 23 months off Klonopin. Several months after stopping the Remeron last Sept, I noticed that breathing at night was becoming difficult where I felt like I had to inhale much deeper with each breath to finish the breath.  Felt  sort of like I was suffocating.    This continued to get worse and I now have this the worst when laying down at night, but also now all day long.

 

This has made any sort of sleep pretty impossible as every breath feels like it needs attention.    I finally did a sleep study test expecting it to be normal, but it showed that I had mild to moderate Sleep Apnea !!

 

I never had any troubles with breathing at night or in the daytime before I jumped from the last dose of Remeron.    HAs anyone else had this?  I know that the air hunger is a common symptoms, but mine has persisted and gotten much worse so that it is no longer ocassional, but all the time, and now I have sleep apnea?  I also now seem to have trouble with my swallowing, as if my throat is closing off.

 

Is it possible that the withdrawal has caused muscle constriction in my bronchi, lungs, etc. and that this will go away when this nightmare is over, or am I now stuck with sleep apnea for the rest of my life?

 

I haven't slept a wink now for several nights and even the MJ I use for sleep no longer is effective.  Once up and around this deep deep queasy, nauseating dizziness sets in which last the whole day and evening.  My world is getting smaller and smaller.  I have not had any windows at all , just the same intense dizziness, nausea, GI stuff, insomnia,  and anxiety all day every day.  When will some of this abate?

 

I appreciate any comments about this air hunger issue, which apparently is pretty common, but I would really like to hear from anyone who also developed sleep apnea from the air hunger  during this awful journey.

 

Many thanks.  BT

[[Li...]]

Hi benzotired.. So sorry you're really going through it at 8 months off.  I'll be 8 months off tomorrow, and I'm having a rough time too. I haven't developed sleep apnea, but have had trouble getting a good breath since tapering and jumping.  If you don't get anyone with similar problem, you could put sleep apnea in search and see what comes up.  I have found lots of info this way.  Hope this gets better for you soon...

[[Ba...]]

Benzo tired,

 

All through withdrawal I've had to pull in my breathes and force them out. Is this what you mean by" air hunger" ?

 

The closing of the the throat is a common symptom of withdrawal. It felt to me like a small claw grasping at my throat and mad it difficult to swallow.

[[Be...]]

Bailey,  For me, I have to extend the inhale greatly to feel that I've finished the breath, even though the breath was actually really finished.    So I 'm breathing way too deeply on the inhale which gives me sore lungs/chest the next day and hurt during the process

 

I now have this during the day as well as when in bed.  IT as been one of the all time worst symptoms as you feel like you are going to suffocate. 

I hope the CPAP machne helps once I get it.  No  illusions that it will be the answer though.  I think th only rel answer is to have the anxiety go away and then all of this other stuff will also fade.

[[...]]

Well I remember reading posts in the 6 to 12 months thread when I was a couple months off. I remember thinking I would be better by now.

 

Almost 7 months now. Still here.  Better but still have a way to go. This is such hard work. Playing mindgames to keep yourself going.

 

I am thankful I figured out that it was the Ativan , that I have made it to here

 

Wonder if I will be writing on the 12 to 18 month.

 

Rough day  Beautiful outside. Went to a staff meeting from my old job.

 

I am such a baby I want my life back

[[ra...]]

It sucks when the weather is so beautiful and you feel like you can't enjoy it. I want my old life back too! I don't know that I have a "good attitude" about coping at all anymore. So I can relate to how you feel. This is just so unfair and it's awful to be stuck here.

[[MT...]]

Rapunzel and 1729, I think the attitude comes and goes. Some days I couldn't find a good attitude with a script and a cheerleading squad. Other days I have it for part of the day and then lose it or vice versa. Other days it's just there. Today started out with baaaaad attitude, hopeless, wanting to quit (and do what, I always wonder?). But I'm a bit calmer this afternoon. How far I am from sleep has something to do with it. And nausea. Not great for attitude.

 

About a year and a few months ago I was in wd but didn't know it (and was thus taking Klon. about 3 times/week since I thought it was behind me and I wasn't sleeping). I was seriously ill with fever, severe GI stuff, weakness, fatigue, headaches, and a ton more. I saw a story about a little boy who faced a year of chemo. I thought, if that boy can do that, I can. So I thought of it as a year thing. Had I only known...but still, it was a good idea. So now I probably have at least that long to go but with likely gradually diminishing symptoms. There is an end, we know what it is, and recovery will come. Those are our life preservers. Keep up the good fight.

[[...]]

I'm 4+ months out and still have these 4 am wakeups everyday.  Sometimes go back to sleep sometimes not.  Sometimes wake up drenched in sweat and legs twitching.  Sometimes wake up with crazy LSD like stuff happening.  One time got up to go to bathroom and my body seemed huge like a giant and my head was gonna go thru ceiling and my body was walking in front of me F#!ing weird.  Another time light bubbles popping in my head close eyes could see hear and feel them popping.  Sometimes visual aura open eyes and have flashing light kaleidoscope vision.  Sometimes wake up body feels like it's vibrating.  When it comes this stuff last 10 minutes to hour.  Anybody know what's going on?

 

Just this one crazy symptom left mostly--Otherwise not doing too bad especially if I do get back to sleep feel OK most of the day.  Still can't handle stress and lot more OCD than pre Benzo.

[[MT...]]

Jth, some of what you describe sounds like a form of DP/DR. But I also wonder if you're having hynagogic hallucinations. Those are a kind of hallucination that are a manifestation of a sleep disorder kind of thing. My thinking here is that with the REM rebound that comes from benzo wd, we have more intense, intrusive dream states that set us up for the hynagogic thing. Here's a wiki link that describes much of what you experience: http://en.wikipedia.org/wiki/Hypnagogia

 

When I had them I would open my eyes and still be able to see (or hear) the vision as if it were right there (Darth Vader has made some very terrifying appearances in our bedroom) but with the lights on and some time passing the sight or sound faded away (how much time varied, but it was usually pretty quick until I had wd insomnia and those took longer to fade). I hope this helps. Wd is so freaking bizarre!

[[...]]

MYfan  thank you for your reply.  Good link and it makes me less nervous if others are having it too in W/D and it's less likely to be some other health problem especially since it only happens waking in early morning no other time.

[[ra...]]

Rapunzel and 1729, I think the attitude comes and goes. Some days I couldn't find a good attitude with a script and a cheerleading squad. Other days I have it for part of the day and then lose it or vice versa. Other days it's just there. Today started out with baaaaad attitude, hopeless, wanting to quit (and do what, I always wonder?). But I'm a bit calmer this afternoon. How far I am from sleep has something to do with it. And nausea. Not great for attitude.

 

About a year and a few months ago I was in wd but didn't know it (and was thus taking Klon. about 3 times/week since I thought it was behind me and I wasn't sleeping). I was seriously ill with fever, severe GI stuff, weakness, fatigue, headaches, and a ton more. I saw a story about a little boy who faced a year of chemo. I thought, if that boy can do that, I can. So I thought of it as a year thing. Had I only known...but still, it was a good idea. So now I probably have at least that long to go but with likely gradually diminishing symptoms. There is an end, we know what it is, and recovery will come. Those are our life preservers. Keep up the good fight.

 

This is a great post! I definitely relate to this. I am trying not to expect myself to be healed by any specific point in time because that's just been making me feel worse so far. I think "I should be healed by now" and feel discouraged because I know I'm not. But as long as I keep getting through the days I am getting there!

 

And you're right that the attitude goes up and down. I know it's healthier when I can realize it's for a reason, like you said—I can think "this feels worse now because I'm hungry" or whatever. Not that I feel great even when I'm well-fed and well-rested, but that helps me not to catastrophize when things get worse for a little while.

 

Good to keep in mind that terrible symptomatic mornings don't necessary foretell terrible days. I hope you're having a good day today!

[[MT...]]

Rapunzel, I think the kinder we can be to ourselves, using acceptance and self-compassion, the more easily we can nurture even the smallest sparks of good attitude and hope. Self-bashing is soul-crushing. But it's such an entrenched habit for some of us, made worse by wd, that we have to constantly catch ourselves. Still, doing that is less work than carrying around the extra load of meanness to self, hopelessness, and bad attitude.

 

I'm dealing with some additional dizziness and fatigue today but I'm not upset about it. I have a plan. How are you today Rapunzel and the others out there?

[[mo...]]

Hi all,

 

First post on this thread.  I am almost 7-1/2 months out.  Some things are better, some seem worse.

 

jth, I just wanted to let you know that I get the internal vibrations too...almost every night still.  Usually for me, it's just as I am falling asleep...I will be asleep for maybe a few minutes, then wake up to feel like my legs are shivering, but they aren't cold...yet if I look at them or touch them, they don't seem to be moving.

 

I still get muscle twitches throughout the day...it doesn't seem as frequent or annoying as it used to.

 

I was put on benzos for suspected anxiety, after I developed gastroenterological issues (bloating that didn't go away, excessive burping, a dull ache under my right rib).  My doc ordered an ultrasound of my stomach and checked my gallbladder.  Everything normal there...so I got introduced to Ativan...then Celexa....then had a migraine event that seemed stroke-like...had catscan, MRI, etc...told to stop Ativan and Celexa.  Two days later, first panic attack started....was switched to 1.5 mg (daily) Xanax, on that for 3 months, still up and down with panic, got crossed over to Clonazepam (1 mg daily), and was on that for about 5 months (taper included)...for a total of 8 months on benzos and now 7-1/2 months off.

 

My main issue right now is with my neck/throat and stomach.  I am seeing a GI doc and he's going to do an upper endoscopy just to check a few things, but I seem to have the issues with excessive gas again.  Burping throughout the day...so much pressure in chest and sometimes throat that its like it automatically sends me into a panic attack, even though I know what it is and know if I can burp some, I will likely feel better.  It gets to the point where I can feel a bit dizzy or lightheaded.  I like to exercise, but I tried jogging after eating 2 weeks ago and I swore I felt like I was going to pass out.  I can usually run several miles without an issue, but I was gasping for air at the end of a few blocks.  I'm a healthy 36 year old...slender, non-smoker, exercise, etc...I'm confident it's not actually my heart.  But, I'm not sure if it's excessive acid/gas being produced or what...

 

I've been doing my best to live my life in the meantime.  My quality of life is down probably 40% of what it used to be prior to all this.  It's hard to put a number to it.  To me, what I hate is having DAILY symptoms that really interfere with how I'm feeling/motivation/happiness.  Mornings and after eating seem to be the worst.  But, on the flip side...I'm not bed-ridden, I still work full-time (though struggle for a few hours some days), and I even ride motorcycle.  My wife and I just took my 3-1/2 year old daughter down to Disney World for the first time this week.  So, I'm doing my best to stay afloat and not let benzos dictate my life.

 

The internal vibrations still freak me out a bit, but are generally harmless.  I just hope that these other daily reactions soon decrease.  I wasn't really dealing with panic-like attacks after the first month of jumping, until like 3 weeks ago.  It still feels more like a physiological trigger rather than a mental/emotional one.

 

Anyway, I'm interested to go back and read more of this thread and see how others are doing here.  I thought I was doing pretty good around the 6 month mark, but now I am waiting to see how things go and in the meantime, try to rule out anything outside of the realm of benzos that might be going on...

 

moto joe

 

 

 

 

[[MT...]]

Moto, you're doing remarkably well with managing your symptoms and moving on with your life as you wait for this to let up. It's disappointing for all of us that we're still here with as many symptoms as we have. If it weren't for BB I think most, if not all, of us would think something terrible was wrong besides w/d. At least we know this ends. Welcome to the thread.

[[ra...]]

Rapunzel, I think the kinder we can be to ourselves, using acceptance and self-compassion, the more easily we can nurture even the smallest sparks of good attitude and hope. Self-bashing is soul-crushing. But it's such an entrenched habit for some of us, made worse by wd, that we have to constantly catch ourselves. Still, doing that is less work than carrying around the extra load of meanness to self, hopelessness, and bad attitude.

 

YES! You are so right about this... I am trying to find a good balance between pushing myself and being kind to myself. It's hard because my motivation is so incredibly low. Just getting out of bed feels like pushing myself. And I'm still figuring out how to motivate myself without being mean. But I am doing so much better than I was months ago so I try to remind myself of that as encouragement.

 

I love that you have a plan! I hope it involves lots of self-care. Dizziness and fatigue are really annoying symptoms. My head is definitely sick of them!

 

Moto, I agree with MTfan that you're doing remarkably well. You're really good at describing your symptoms and being able to recognize that they don't define you. I'm so glad I have this forum so that I can keep a perspective on my symptoms. The doctors I see are really unwilling to accept that recovery from benzos could go on this long, but we are the evidence. It seems to go up and down a lot but I think we're in a good place. There seems to be a good percentage of people who feel major differences at a year out. I'm hoping that we're almost at the end of the phase where symptoms really take over every day, and soon we will be managing them on the sidelines but mostly just living the lives we want!

[[St...]]

I'm six and a half months out and the fact that my nervous system is so wrecked that I still can't even watch any kind of TV programme is freaking me out! My CNS just can't take the stimulation of looking at the TV screen, if I force myself to do it I just feel awful afterwards. I can't read more than a handful of pages of a book either, it's like my brain just can't take any more information?!?! I know there's a lot more to life than watching TV but it's clearly indicator for how screwed up my CNS is.

 

My only positive for six and a half months off is that I can now sit in the sun in my garden where as before my sensitivity to light was so bad that I couldn't do that.

 

Doctor is telling me to reinstate and do a slow taperr, but I really don't want to do that unless I absolutely have to. I've read such bad things about kindling etc.

 

Was anyone else in this group as bad at six months off and did they see improvement without having to reinstate?

 

Thanks

 

[[ra...]]

I was super bad off at 6 months out. Definitely couldn't watch TV or read, could barely eat. I was in a constant panic fear. But I didn't reinstate benzos! And things definitely got better.

 

My doctor at the time had me up the dose of my antidepressant, but I think that just made me even more agitated and prolonged the symptoms. I'm back down now and much closer to getting off.

[[...]]

I'm six and a half months out and the fact that my nervous system is so wrecked that I still can't even watch any kind of TV programme is freaking me out! My CNS just can't take the stimulation of looking at the TV screen, if I force myself to do it I just feel awful afterwards. I can't read more than a handful of pages of a book either, it's like my brain just can't take any more information?!?! I know there's a lot more to life than watching TV but it's clearly indicator for how screwed up my CNS is.

 

My only positive for six and a half months off is that I can now sit in the sun in my garden where as before my sensitivity to light was so bad that I couldn't do that.

 

Doctor is telling me to reinstate and do a slow taperr, but I really don't want to do that unless I absolutely have to. I've read such bad things about kindling etc.

 

Was anyone else in this group as bad at six months off and did they see improvement without having to reinstate?

 

Thanks

 

I'm 7 1/2 months off and I'm sick too.I did a long slow taper of 10 months last year, and I feel like shit.

 

I've been in acute for 4 1/2 months this sucks.

 

I will say that my CNS my anxiousness /panic symptoms have gone down. But now I get the physical ones. Benzo flu, sick vibe, dizzy, hangover, sick, muscle aches blah, feeling. It's 70% that and 30% mental.Before this year, it was 70 mental 30 physical.

 

It took me a long time to sit in front of the TV too. MONTHS.

 

But I'm better now. I can do it. That part will fade.

 

I just wish this Benzo flu shit would stop!

 

Tho, the last 14 days have been a bit less hardcore. The sxs do seem a bit milder....

[[...]]

I was super bad off at 6 months out. Definitely couldn't watch TV or read, could barely eat. I was in a constant panic fear. But I didn't reinstate benzos! And things definitely got better.

 

My doctor at the time had me up the dose of my antidepressant, but I think that just made me even more agitated and prolonged the symptoms. I'm back down now and much closer to getting off.

 

When did you start to 'turn a corner"?

 

I'm 7 1/2 months off and I've got bad physical symptoms. Menatl too a bit, but the Benzo flu/hangover feeling is what's hitting me hard.

 

How were you at 7/12 months?

[[ra...]]

It's hard to say because I didn't really "turn a corner," just sort of gradually got better at getting through the days and then now if I look back several months I know the effect is dramatic. I think I was probably better at 7.5 months, in the sense that the physical symptoms had mostly gone away and I was just dealing with the mental stuff. I still have a lot of mental symptoms but they're not completely taking me over the way they used to. I can do a lot of things in spite of still feeling them.

 

Reinstating benzos never really seemed like an option to me because I didn't think that would really help. I know we're all different though.

[[...]]

Yeah, I know. I don't really want t reinstate..but this is taking WAY longer then I ever thought it would.

 

Also, I'm much, much, much, sicker now OFF benzos then I ever was on it. Going off it, for me, has made things much worse.

 

I only took Xanax 3 days a week. But when I tried to stop, All hell broke loose.

 

 

I'm hanging on. We'll see....

[[ra...]]

Best of luck. I think in withdrawal and recovery we can definitely feel a lot worse for awhile, but it's on the way to getting better.

[[MT...]]

Yeah, I know. I don't really want t reinstate..but this is taking WAY longer then I ever thought it would.

 

Also, I'm much, much, much, sicker now OFF benzos then I ever was on it. Going off it, for me, has made things much worse.

 

I only took Xanax 3 days a week. But when I tried to stop, All hell broke loose.

 

 

I'm hanging on. We'll see....

 

JACD, I'm sorry you're getting so nailed with such minimal usage. Like you I feel much worse off of benzos overall but I've seen health conditions get better after coming off of them and some time passing (CFS, migraines, fibro, etc.) I'm seeing some progress though, finally.

 

Rapunzel, I struggle with the zero motivation thing too. I used to be a motivated person and now I have to set goals like: make my breakfast, get through email, etc. Really small things.

[[Li...]]

Wanted to stop by and report that I'm coming out of 4 weeks of a gut wrenching wave.  This was the worse wave ever!  Even went to my doctor, and she gave me a prescription for colofac which helped with the cramps in my intestines.  I'm to have blood drawn on thursday to look for inflammatory markers, and some other tests.  But wont hear from that for another week.  She knows it may all be benzos.  I'm feeling better for the last two days, but still on a bland soft diet.  No more cramps and I've stopped taking the colofac.  I had so much anxiety, and CNS stuff too going on.  I'm not shaking as bad today.  Could this be my last bad wave?  Yeah, I know.. no one can really tell..  but I'm hopeful..