18 - 30 Month Plus Group

Thanks for the update Saga, understand all you have said 

 

 

Oh God Sofa, I could have written your post 

 

Well I had a panic attack yesterday before going into the supermarket. Waited for half an hour, cried a little, did some breathing and then went in feeling like i was on planet hell. Not much better today. Feeling like this is going to beat me after putting up a fight for so long. Getting triggered easily too by next to nothing. Hate this shit!!!!!

 

Marj,

 

I know exactly how you feel.  My grocery store trips are still very tough.  Even though I do them ever 2 or 3 days, sometimes it feels as awful as it's always been.  The dread and detachment remind me that I'm in WD and it is so discouraging that such a seemingly simple thing to do is like climbing Everest.

 

People who are recovering from any illness don't feel well.  Uneasy sensations and disturbing symptoms keep pounding into our heads that we are still sick.  I keep telling myself that, if I could take a key and just shut off my thoughts, things wouldn't be so bad.  That is so much easier said than done.  I haven't yet figured out how to do it so, in the meantime, I just try to accomplish one or two ordinary things in a day that remind me that I'm moving through life like other people move, just not as effortlessly as I'd like to.  I keep telling myself this is a s-l-o-w and l-o-n-g process of recovery, but it is temporary and will be resolved in time.  The healing of other ailments can be accelerated by things we do, like taking antibiotics or keeping wounds clean, etc.  This is so different.  There is nothing we can do to fix this.  Our internal healing systems are in the driver's seat and all we can do to save our own sanity is try to stay calm and be good passengers until we arrive at our destination of complete recovery.

 

Love you, Sofa

Sofa, once again I relate to what you've said. I've just cut my lawn and tidied up in the garden a bit. That's all I can do and it freaks me as I was doing more previously. I think we get weary and maybe more sensitive idk. For instance I get triggered by my mum at times and I was pottering in my garden sort of ok and then she showed up, yikes sx ramped. Don't get me wrong, I love my mum but wow, I just can't handle her at times. OMG yes, if we could switch the thoughts of!!!!!

 

Love you too ❤️

Hi All,

 

My jump date was Jan24th 2014. 

I have been well since About the end of April 2015.  So i think about the end of 15 months going into 16 i felt completely well and have been good since then making it i would say almost 5 months but now i am down with colon and stomach issues.  This morning i raided CVS with all the over the counter meds for GI stuff.  So far ive had the Gaviscon white liquid over the span of 2 hours.  A bit better but am wondering what you all use to help with painful acid.  I am also getting 2 other things.  One is George's Aloe and Enzymatic therapy DGL ultra chewables. 

I'll report back if any of them help. 

"Let's keep buggering on"

I get these episodes of GI issues mainly acid reflux (GERD).  I take Zantac OTC and I have a prescription for prontnix for when it gets super bad.  These episodes come every 2-3 months and almost throw me back in acute because it disrupts my sleep and causes tons of sleep disturbances including panic attacks because the acid hits my voice box thus causing it to spasm and I wake up in panic unable to breathe.  This is the reason I was put on benzos when all along it was the GERD causing my symptoms. I saw a Naturopath who is helping me alkalize my body through diet to cure this once and for all. 

. For instance I get triggered by my mum at times and I was pottering in my garden sort of ok and then she showed up, yikes sx ramped. Don't get me wrong, I love my mum but wow, I just can't handle her at times. OMG yes, if we could switch the thoughts of!!!!!

 

Marj ,

Yes, this is exactly me when it comes to my mom and I have a close friend who is tapering, she feels the same way.  When mom comes over I'm desperate for her to leave, and yes I love her but in this state I can't handle her right now.  So don't feel bad it's not just you.

It's so helpful reading all of your posts. Thank you for sharing of yourselves. Like Sofa and others I used to read the success stories but it became too disturbing once I reached a point that most of them recovered much earlier than I did. I'm happy for them but I'd feel even more abnormal and damaged after reading them. Coming to this thread helps shore up my courage, reminds me I'm not alone, and I leave feeling inspired by how you all deal incredibly bravely with an enormous amount of suffering.

Hi All,

 

My jump date was Jan24th 2014. 

I have been well since About the end of April 2015.  So i think about the end of 15 months going into 16 i felt completely well and have been good since then making it i would say almost 5 months but now i am down with colon and stomach issues.  This morning i raided CVS with all the over the counter meds for GI stuff.  So far ive had the Gaviscon white liquid over the span of 2 hours.  A bit better but am wondering what you all use to help with painful acid.  I am also getting 2 other things.  One is George's Aloe and Enzymatic therapy DGL ultra chewables. 

I'll report back if any of them help. 

"Let's keep buggering on"

I get these episodes of GI issues mainly acid reflux (GERD).  I take Zantac OTC and I have a prescription for prontnix for when it gets super bad.  These episodes come every 2-3 months and almost throw me back in acute because it disrupts my sleep and causes tons of sleep disturbances including panic attacks because the acid hits my voice box thus causing it to spasm and I wake up in panic unable to breathe.  This is the reason I was put on benzos when all along it was the GERD causing my symptoms. I saw a Naturopath who is helping me alkalize my body through diet to cure this once and for all.

 

Hi Niners,,

Sorry you have to experience this GI menace that we all know is much more than just GI.  Its once again back in acute and panic with interrupted life and its domino effects...... remember this shall also pass.

 

My experience with IBS though horrendous at the moment is yet another symptom that has taught me something.  Yes i had GI issues before Klonopin with several endoscopies and a couple of colonoscopies for which they found and treated me for H pylori and then sibo.  But up to now during the past 20 months generally for the first time in my life i couldn't feel an upset stomach the way i used to before klonopin. 

Just like i have no feeling on some parts of my skin as the result of withdrawal or the shock of cold turkey  because my nerves had snapped.  So its a symptom that has just come on board, though did have a little taste of it here and there but i don't think it was like how bad it is now, but then again in this wd any pain is a no longer just pain but a hellish life changing disaster.

 

we are all so different yet so similar in a lot of our experiences in the 18-30 timeline.  Different because i experience periods of total and complete recovery, the last one was the past 4 months and then suddenly i get hit with STUFF, ex IBS severe enough to wish for death.  And of course our problem is we can't just go to a doctor willy nilly anymore.  That has already been established. 

 

For the IBS.  It started on Thursday and on Friday i started taking dgl licorice chewables and liquid Aloe.  The type of Aloe looks and tastes like water and has no soothing or relief.  The dgl helps.  Most of all baking soda and water helped me and eating v tiny amounts of food and staying away from saucy spicy delicious food.  Black tea has also helped me, it seems to mop up the excess acid.

 

 

 

 

 

 

I don't post here often but I had to chime in on reading the success stories...I use to cling to these stories then I also became very saddened reading of people who had healed at early times, the ones healed at 3months irritated me..then it was the 6 month ones...the one year ones.....the ones finished at 14 months just down right pissed me off...

 

Left me feeling like what am I ? Chopped liver? ... come on.......I'm very happy for all who have healed.. but it's our turn now...

 

I am very close, really nothing left to complain about...I've got one foot and four toes over the finish line just waiting for that last little piggy

Nomne

Nomne it sounds as though you are almost there! Nice! Reading the success stories is always bittersweet and human nature is after all human nature. We all want to be healed sooner rather than later.

 

Saga, so good to read your update – congrats on the sleep improvement, that’s huge!

I think of you often, knowing you’re fighting the opiate battle as well as the benzo battle, and I think your stamina and determination deserve applause.  You’re healing, and you’re figuring out all the challenges along the way. Wow!

 

In truth, I thought long and hard before I posted anything at all, so I’m really glad it was reassuring to you. When I posted my SS at 18MosFree I truly believed it was all over.  I felt incredibly good for months, and am stunned by my reappearing issues. But now I believe this happens to many of us.

 

Thanks Aft, really appreciate it.  Clearly this is going to take a lot longer than I'd hoped. Wish I'd known something/ anything about tapering and or stopping meds but then again I'm sure most of us would like a do over  or two, maybe 

 

My takeaway from your story is the undeniable fact you felt well for months. That's simply huge! You have the reassurance it can and will return, hopefully this is simply a tiny blip in healing. 

 

 

Well I messed that up didn't I  yet another reason I shouldn't post in the morning

 

Wishing everyone a calm day

 

Does anyone else have hypersensitivity to sound? My eardrums feel like they are going to burst sometimes. Sound hurts.

 

on and off.  My eyes are a way bigger issue with sensitivity

I don't post here often but I had to chime in on reading the success stories...I use to cling to these stories then I also became very saddened reading of people who had healed at early times, the ones healed at 3months irritated me..then it was the 6 month ones...the one year ones.....the ones finished at 14 months just down right pissed me off...

 

Left me feeling like what am I ? Chopped liver? ... come on.......I'm very happy for all who have healed.. but it's our turn now...

 

I am very close, really nothing left to complain about...I've got one foot and four toes over the finish line just waiting for that last little piggy

Nomne

 

 

Thanks for posting this Nomne. That's exactly how I feel, but don't like to say. Seriously glad you're getting there. I'm still chopped liver  Actually a bit better considering I got 1 hour sleep and work had been stressful. Got the breathing shit!! as Jen says.

 

Yup, still have hypersensitivity to loud unexpected sounds, bad brain fog, dizziness, blurred vision which changes daily, unpredictable sleep- from 4 hours broken sleep to 8 hours broken sleep waking every 1 1/2 to 4 hours, nausea, of course the crazy anxiety, constipation, bad shoulder and hip pain, numb toes with occasional electric shocks in them, skin rash with intermittent itching, bad blurred vision,  burning eyes, frequent back of the neck headaches hindering laying down on the pillow when trying to sleep,  all sort of air hunger breathing issues including when the anxiety dries out my nasal and throat membranes making breathing while trying to sleep a challenge ........  just seems to go on and on. 

 

That being said, I'm definitely better than 6 months ago, and sleep is gradually returning with more 7-8 hour total nights than 1-4 hour night as it used to be, but usually feel worse if I sleep longer number of hours. 

 

I've been doing regular low frequency neurofeedback and craniosacral therapy, both of which I credit with any improvements. in sleep and the fog.  Always feel less fog and overall discomfort after every visit.

 

So, after 40 months off klonopin and 25 months off Remeron, it seems like this will continue to be a long haul, but we can never give up, as resolution may be right around the corner, right?  Hope so, as that belief is what has kept me going all this time.   

 

Anyone else have any thought on how long this can take?  What a journey. 

Yup, still have hypersensitivity to loud unexpected sounds, bad brain fog, dizziness, blurred vision which changes daily, unpredictable sleep- from 4 hours broken sleep to 8 hours broken sleep waking every 1 1/2 to 4 hours, nausea, of course the crazy anxiety, constipation, bad shoulder and hip pain, numb toes with occasional electric shocks in them, skin rash with intermittent itching, bad blurred vision,  burning eyes, frequent back of the neck headaches hindering laying down on the pillow when trying to sleep,  all sort of air hunger breathing issues including when the anxiety dries out my nasal and throat membranes making breathing while trying to sleep a challenge ........  just seems to go on and on.

Anyone else have any thought on how long this can take?  What a journey.

 

I thought I was the only one that was experiencing strange sleep disturbances.  I get the dry throat and nasal dryness which makes it hard to breathe. I usually sip on ice chips throughout the night. Also burning tongue and the list goes on.  So hard to believe all the craziness that comes with discontinuing a benzo.  Hoping and praying this all passes very soon.

I am in the process of getting some LDN, low dose nalotraxone.  Check it out.  I know of other benzo folks for whom it has helped with sleep, pain, and general well being.  Supposed to be pretty benign.  Its for immune regulation, and neuro disorders.  I'd say we qualify. 

 

Hey Benzotired, I was doing a forum search and came across this post of yours from four months ago.  Wondering whether you went through with the LDN and, if so, did you notice any positive results at all?  I'm particularly interested in your feedback as regards pain relief. Thanks.

 

To everyone else, two words, this sucks!  Hard to read of all the suffering this far out, I'm sorry.   

So, GREAT to hear your update, Nomne, very happy for you.  I hope others will also pop in with some good news to help keep our spirits up.

 

 

PS:  Glad everyone's getting (re)introduced to Claire Weekes.  If I weren't so challenged (that's the gentle word I choose to use  ), I've have liked to have perhaps spearheaded and mentored a Dr. Claire Support Group, just that passionate about her, and feel so many here could really benefit.  Maybe someone else will get one going.  Oh, but then again, if I were able to do that, I highly doubt I'd be on BB very much at all.  So there's that. 

 

Hello...I have graduated to the 18 month off of klonopin....to be honest I have take three dosages of klonopin in that time but I consider myself off of Klonopin for 18 months.  It has been hard and my dr. wants me back on.  I have also been trying to wean off of antidepressants since this past year but crashed in January of 2016.  I can not sleep with out trazadone.  I am so frustrated that I can not sleep.  I have tried melatonin, B6, magnesium glycinate, progesterone/estradiol patch, etc. and nothing works except trazadone.  I still struggle with anxiety a lot!  I can't remember the last time I have had an entire week where I felt mostly relaxed.  My cortisol is all screwed up and I am sleepy in the morning and day and get alert and energy at bed time with out trazadone (25 - 50 mg).  My dr. wants me to switch to remeron because it will help with my depression and anxiety better than trazadone and helps with sleep.  I am scared to try it but guess I will give it a try.  I have become intolerant to ssri antidepressants they are too activating for me.

ABCD-  I tried the LDN with bad results, sorry to say.  I have a lot of it if you want some. I'll never try it again. It revved me up big time.  Regarding pain control, it didnt do anytihng.  I currently occasionally use aspirin and also tylenol, but for the most part, I take nothing any longer, except vitamin D and turmeric.  I  have tried every supplement known but everything turned on me and made things worse.  Even magnesium developed a paradoxical reaction and I had to stop that.  So, for those of you who are still trying out the supplement path, do yourselves a favor and forget about them.    I have a whole closet of those different items that made things worse, as do many of us.  As I understaind it, once you are better, you can then tolerate them again, but not while you are still in it the bad stuff.      I have found that things have gotten worse since month 18 off the last drug. I am now in month 25 off the last drug, so I'm hoping that maybe this is the storm before the calm.    Seriously, the only things that helped, for me anyways, has been meditation audios,  5 element acupuncture, neurofeedback and the best of all has been craniosacral therapy, which calms everything down a lot.I do that 3-4 times a week.  Sleep gradually returning has been huge , but it is still broken up 1-4 hours each time.  I then listen to audiobooks to get back to sleep once I wake up.    I can usually clock 6 - 8+ hours a night this way, not wonderful but so much better than the 1-4 hours a night I got not very long ago.     

 

I look forward to some small improvement every new day. As you all know, it keeps changing every few minutes throughout the day, but I'm confident that one day it'll stick and the sleep will return, along with the gradual loss of all the physical symptoms.

 

Downtongirl-  This is just my experience, but the Remeron has proven much worse than the benzo to get off. I'm sure that my current protraction is due to the remeron, as I"m 40 months off the benzo and 25 months off Remeron..  Dont trade some temporary sleep now for the hell that might occur after getting off Remeron.  imho.    I never thought I'd ever sleep again without taking something, but I am now currently sleeping, broken as it may be, without the use of anything other than 2 mgs of melatonin, and I dont really think that does anything.  Sleep does return, but it can be a rocky road getting over the hump where you do get more hours. 

 

Good luck to all of us.  We have gotten this far, and the end may be right around the corner.  Stay the course, and stay away from the recommendations of possibly well meaning, but ignorant MD's especially psychiatrists, and dont take any more psych meds of any kind.  Again, after years of this hell, this is only my experience, but I think I've experienced pretty much everything with the exception of the the mental stuff like the depression, dp/dr.  Somehow I was spared those things. 

 

Regarding the air hunger breathing stuff/dried out throat and sinuses, , I have found that sugar free cough drops help a lot and sometimes I sip on various herbal teas with honey, that I keep on my nightstand.    I'm told that this has gone away for a few others I know after about 18 months. I'm in my 16 th month of this air hunger and it's changing a bit, so I"m hopeful that maybe it;ll go away soon, which will make sleep a lot easier.

 

Bless all of us. We are truly warriors far stronger than we could ever have believed, to have gone through this and keep persevering.  When this is over, we will all be able to leap tall buildings in a single bound.  I think I can do that now. 

 

 

Benzotired ... yep, I can leap tall buildings with a single bound ... and it tends to increase the air hunger ...

 

Sleep ... a long time ago I just gave up and let it be as it was ... until it wasn't ... went 14 months with little or no sleep ... or so I felt ... I did "rest" but there was no recognizable sleep ... and I survived ... as have many others ...

 

For me ... adding another psychotropic just was not in the cards ... one drug was enough for this old fella' ...

 

We just keep staying the course and all will be well eventually ... 

 

BTW ... it was Claire Weekes and Robert Whitaker, way back when, that gave me the "ground" to start my process of recovery ... have found a few other voices along the way as well ...

Something I have to do each and every time I interact with a medical person - or - am seeking information myself ... trying to make a decision to add or subtract something that I am "taking" or "doing" ...

 

(1) ... First do no harm ... this is the tough one, and all too often does not have a clear cut path to follow ...

 

(2) ... Informed Consent ... this is the easy one ... when being asked to subscribe to a treatment, or intervention, or whatever, by a medical person ... the one making the "suggestion" has the obligation to list in detail all the possible treatments or interventions and their likely results that pertain to the suggested "diagnosis" ... the "choice" is mine, not the medical person ... and ... I have the responsibility to demand that the medical person do this ...

 

Asking how the diagnosis was arrived at, asking what outcome I may reasonably expect, and asking what are the consequences of my engaging a treatment ... all my responsibility ...

 

 

A buddy bumped this SS from 2013: “2.5 years out. Life looks good!”

http://www.benzobuddies.org/forum/index.php?topic=96511.0

 

GardenerForHealth came back at 30 Months to let people know that even though she wasn’t 100% healed, she was ‘healed enough’. At first I was drawn to her story because we share a history of abuse, but I think there’s something in this for all of us who are this far out and still struggling. This passage, among many, stood out for me:

 

“What I have learned through this nightmare are deep treasures…. I no longer feel "special" and "better" than anyone. My ego has been "right sized," thankfully. … I now know how to take better care of myself. When sx flare, I go on long walks. Or I garden. Or simply curl up into bed and watch a movie. Or I go to an AA meeting and mingle with my friends. I try not to focus on my thoughts, or the sensations in my body. They will only bring me down. I do my best to "stay out of self." …If you feel that you will never get better, I understand. I was hopeless for many many months, and years. (I began my taper in 2010.) I am not hopeless anymore. My receptors have repaired enough for me to see that recovery is just around the corner. Please hold on. Please keep fighting the good fight. It gets better. I gets SO much better. Even if these last few sx never go away, I can live my life now.”

 

Her story has reminded me that this is not only a physical journey, but also a spiritual one. And although organized religion and 12 Step programs are not my thing, I can see that I’ve been ignoring my inner self for too long now, and obsessing on my physical discomforts. Maybe it’s time to look inward again….

Mind Body Spirit Soul… it’s all about Balance.

 

I’ve been quite sick for a week now. My sxs have been exaggerated by a nasty cold. I’ve been panicking, irritable, and losing hope. This SS has helped me pull myself up again. I hope it may help some others here too. We're doing this!

 

A buddy bumped this SS from 2013: “2.5 years out. Life looks good!”

http://www.benzobuddies.org/forum/index.php?topic=96511.0

 

GardenerForHealth came back at 30 Months to let people know that even though she wasn’t 100% healed, she was ‘healed enough’. At first I was drawn to her story because we share a history of abuse, but I think there’s something in this for all of us who are this far out and still struggling. This passage, among many, stood out for me:

 

“What I have learned through this nightmare are deep treasures…. I no longer feel "special" and "better" than anyone. My ego has been "right sized," thankfully. … I now know how to take better care of myself. When sx flare, I go on long walks. Or I garden. Or simply curl up into bed and watch a movie. Or I go to an AA meeting and mingle with my friends. I try not to focus on my thoughts, or the sensations in my body. They will only bring me down. I do my best to "stay out of self." …If you feel that you will never get better, I understand. I was hopeless for many many months, and years. (I began my taper in 2010.) I am not hopeless anymore. My receptors have repaired enough for me to see that recovery is just around the corner. Please hold on. Please keep fighting the good fight. It gets better. I gets SO much better. Even if these last few sx never go away, I can live my life now.”

 

Her story has reminded me that this is not only a physical journey, but also a spiritual one. And although organized religion and 12 Step programs are not my thing, I can see that I’ve been ignoring my inner self for too long now, and obsessing on my physical discomforts. Maybe it’s time to look inward again….

Mind Body Spirit Soul… it’s all about Balance.

 

I’ve been quite sick for a week now. My sxs have been exaggerated by a nasty cold. I’ve been panicking, irritable, and losing hope. This SS has helped me pull myself up again. I hope it may help some others here too. We're doing this!

 

 

 

Yes me too, I saw this and it helped. So sick of this crap. It makes a nice change to read something inspiring instead of being triggered.

As soon as someone starts the 60 to 120 month club I think I'll just shoot myself   Please do not do it or I'll lose all hope :'(

Thank you for the "reminder" Aft ...

 

Indeed ... this moment is the one that matters ... that is where I am living ... 

 

Chop wood, carry water ... as best we can ...

Thought I'd give a good update...in the last two weeks I've had a level of mental clarity and no DR or inward thoughts that shocks me.  I've also had no anxiety or panics.  This includes yesterday which consisted of work, an annual physical, and my pregnant Laura's unexpected overnight stay in the hospital(she's okay but I think I'll be a dad a lot sooner than planned).  I was present mentally the whole time!  I still have lots of healing but this is the first time I can truly see this ending for myself.  It was always blind faith before this. 

 

Oh...never thought I'd be able to walk and sit in a hospital as a calm individual