18-30 MONTHS AND UPWARDS

[[Ho...]]

I can relate to Klungo Butterfly, month 21 and 22 where horrible (acute all over) with a few normal moments, but many days of physical torture. For a normal human being the feeling I have in month 23 is still crap, but in comparison to 21 and 22 it’s relatively doable. Yes the waves get me on my knees for some hours, but on the other side symptoms drop after each time frame now. So I can say healing is happening. The brain is focussing on specific nerves for 2-4 weeks and than move to another.

 

The lows are still very nasty, but I am back to baseline much faster.

So in general there is hope for the upcoming months. Tough, but improving.

 

Fingerz crossed, all the best to everybody.

[[Li...]]

Most of mine has been really severe anxiety in Months 21 - 22 that has caused a lot of conscious breathing/air hunger and intrusive existential thoughts. Really ready for all of this to get better.

[[tr...]]

Month 36. My remaining symptoms are extreme weakness, and breathless. I'm wondering, if the weakness is due to inactivity and stress, for such a long time. Is anyone in the same situation?

[[Kl...]]

I'm only 29 ish and have a lot of fatigue.. it does seem to be common, and I imagine that not being active could contribute to it further. It's good that those are the only remaining symptoms for you though.

[[NY...]]

Good to hear from you, Translator.  Sorry the fatigue is still so strong, but wonderful news so many other symptoms have passed!  Yes, I still have fatigue as well, and spend most of my day laying horizontally.  Strangely, I feel pretty decent when I'm out and about, walking and running errands.  But when I'm home, and stationary, it's almost impossible to sit up at my desk.  Not sure if just due to fatigue though.  I can read fine when I'm laying down, but sitting up, it's as if it's too stimulating, or something.  I've never figured it out, and probably never will.  Just waiting for it to pass.

 

In waves, I still get MAJOR fatigue at times, where I can barely move.  It's infrequent, but when it does come on, it's really intense, as if I've been drugged.

 

All the best,

WR

 

 

 

 

[[br...]]

 

Need all your support and loving thoughts today . :'(

 

Just got a call back for a repeat mammo . High anxiety but I'm reminding myself that this is not unusual and in most cases means nothing. It's just another ' Expect the Unexpected ' . 

[Guest [Lu...]]

im around 21 months out, and its so weird that while i know my overall baseline is better, its still intolerable when im at my worst and boy do i despair, my stamina for all this after a 3 1/2 year battle all told is just totally shot. im drained to 0, mentally and physcially.

 

if i felt the way i did now 2 years ago, i might a said, eh, im not toooo bad, but im just so unbelievably freakin tired of this, my lows still floor me.

 

i think its because this withdrawal has been so bad, that while relatively speaking im better, for a "normal" human, its still way too much discomfort to conduct a normal life. even feeling better, i still feel lousy. i still cant really go out for extended period, still cant handle a concert or sporting event. still get dizzy and disoriented in public. still cant get back in a band and play live.

 

but the agoraphobia is better, the toxic dying horribly from poison every morning feeling isnt nearly as bad (mornings still hard though)

 

whew, man this is something else.

 

still feel like im a ways away from saying im "healed" still cant really imagine that. what a helluva price this has been to pay, even if i recovered soon benzo withdrawal really annihilated my life, my reputation, my music, my writing, relationships, freindships. just annihilated. many people will never look at me the same, many people think im completely full of crap and crazy.

[[NY...]]

Rabbit - so sorry you have to deal with this stress.  Thinking of you.  I've had that call before (very common). In my case, they actually did find a mass, and I competently freaked out of course, but there was no need.  Had it biopsied, and it was just a dead mass of nothing that dissolved on it's own.  No procedures or follow ups necessary. But it sure scared me.  I know how hard it is to deal with the unknown while going through this.  I had to take my cat to the vet today b/c he's sick, and I felt like I was going to pass out b/c so scared they'd say it was something terminal (he's okay).

 

Luke - I related to every single thing you wrote.  I think many of us do.  We just need to keep getting through the days, and one day soon we'll have ourselves/lives back 

 

I had a window today for ten minutes, where I felt clear, healed, joyful...  all symptoms gone.  Now I'm back in hell, with terror, dp/dr and the rest of the hellish stuff.  Gross.

 

Hang in there buddies.

WR

[[2t...]]

 

Need all your support and loving thoughts today . :'(

 

Just got a call back for a repeat mammo . High anxiety but I'm reminding myself that this is not unusual and in most cases means nothing. It's just another ' Expect the Unexpected ' . 

 

 

Fingers crossed for you Rabbit.

My girlfriend/Wife always gets called back, seems she has dense breasts and they should use a 3D scan? It puts her on edge and I cant for the love of it understand why they dont just use the 3D test up front, probably insurance crap.

 

2trusting

[[br...]]

 

Thanks NYC and trusting . I'm calmer today thank they Lord. I went into the imaging place and requested a copy of the follow up order . Comforting in a way because there is no mass , just a lot of dense breast tissue and sure enough they have to do the 3D thing plus sonagram . I guess the good thing is that even at my age I have nice firm girls and not the floppy dust rag boobs that my sisters got blessed with . ( Shout out and a thank you to my deceased Mum who blessed me in so many ways  )

[[Ry...]]

I have a bit of randomness I'd like to share. Lately, I've had an increase in headaches, ear pressure, & sinus pressure. On a whim, I decided to try some Claritin D. First off, I'd never be able to touch this stuff earlier in withdrawal, but caffeine doesn't hurt me these days, so I thought I'd give it a try. I was very wary of the ephedrine and how I would react. To my surprise, it worked great. My head ache improved and my sinus pressure did as well. On top of this, my mood improved a ton. I didn't know much about ephedrine, but decided to google it today. Turns out, ephedrine stimulates dopamine and serotonin and that's why my days were better. Probably went from feeling like 75% to say 85%.

 

After reading more, I've decided to trash the remaining pills. There are too many negative reports on how this drug acts on the brain. What I took from this, is that once my brain decides to produce adequate amounts of dopamine and serotonin, I will be feeling much better. Guess I knew this anyway, but a little physical evidence makes me feel some what more at ease about this process. Back to waiting.

[[pi...]]

I relate to alot of what luke skywalker said as well. so good to see so many familiar names on here. Glad to find this thread again. Your all champions, all of you.

 

I relate alot to skywalkers post - i was out of fuel this time 18 months ago. Right now im burning anything that I can throw in the tank with very mixed results. Some days i run on anger, other days i drift by in an apathetic fog, some days i just embrace the misery and nihilism and say come and get me death, i dont care anymore - losing the daily struggle to swallow the fear. Then a few days later as things turn, i shake my head at where I was mentally the last few days. On good days i try to just stop and enjoy the clear air. But the machine just keeps on spinning and im exhausted.

 

I will say im grateful to have you all along this journey with me and I feel hope returning this month as I see my and many others symtpom profiles decrease into the single digits. We may still be in hell but were on the right path out. And we have each other to bear the journey with.

 

Rabbit - wish you courage and strength for another horrible experience ontop of all that youve been through. Please keep whistling past the graveyard as you always do. I always find your posts full of positivity which is great.

 

I hope we can all dig deep and find some emotional reserve for the last leg of this. Oh and Im down to a few core symtpoms like sleep issues, night terrors, anxiety, bowel inconsistency and sleep deprivation assoc. sxs like cog fog. Bowels seem to be the next thing moving in the right direction, thank god.

 

Wish you all well,

 

Pinky

 

[[NY...]]

Hey Buddies,

 

Sorry I haven't been very active here.  Still in a wave - long, hard, intense, for over two months now :'( :'( :'(.  I'm trying to stay hopeful by convincing myself - again - that it's the last big one, but kinda losing steam and hope.  If anyone has a success story of someone that had a long awful wave at the end, I'd love to read it.

 

Hope everyone's hanging in there.

WR

 

 

[[Kl...]]

Hey Buddies,

 

Sorry I haven't been very active here.  Still in a wave - long, hard, intense, for over two months now :'( :'( :'(.  I'm trying to stay hopeful by convincing myself - again - that it's the last big one, but kinda losing steam and hope.  If anyone has a success story of someone that had a long awful wave at the end, I'd love to read it.

 

Hope everyone's hanging in there.

WR

 

 

 

I'm with you NYC. Sorry you are still suffering too.

 

It's almost 6 weeks for me now, it's been unbelievable.. Intense waves every day.. like first year shit. I'll get windows here and there, i had one Saturday for 4 hours feeling more or less healed, but then back into it again.. I am really struggling. Lots of crying spells / hopeless feelings etc.

[[NY...]]

Hey Buddies,

 

Sorry I haven't been very active here.  Still in a wave - long, hard, intense, for over two months now :'( :'( :'(.  I'm trying to stay hopeful by convincing myself - again - that it's the last big one, but kinda losing steam and hope.  If anyone has a success story of someone that had a long awful wave at the end, I'd love to read it.

 

Hope everyone's hanging in there.

WR

 

 

 

I'm with you NYC. Sorry you are still suffering too.

 

It's almost 6 weeks for me now, it's been unbelievable.. Intense waves every day.. like first year shit. I'll get windows here and there, i had one Saturday for 4 hours feeling more or less healed, but then back into it again.. I am really struggling. Lots of crying spells / hopeless feelings etc.

 

So sorry to hear that, Klungo  :'(  I'm just really in disbelief - still - that this is happening to me/us. I guess even after 4 years, I still don't accept the process.  I can kinda/sorta still "feel the healing" underneath the awful torment, but it's tough. 

 

Good to hear you're getting breaks here and there. 

 

Hang in there friend.  Thanks for reaching out.

 

WR

[[Kl...]]

Hey Buddies,

 

Sorry I haven't been very active here.  Still in a wave - long, hard, intense, for over two months now :'( :'( :'(.  I'm trying to stay hopeful by convincing myself - again - that it's the last big one, but kinda losing steam and hope.  If anyone has a success story of someone that had a long awful wave at the end, I'd love to read it.

 

Hope everyone's hanging in there.

WR

 

 

 

I'm with you NYC. Sorry you are still suffering too.

 

It's almost 6 weeks for me now, it's been unbelievable.. Intense waves every day.. like first year shit. I'll get windows here and there, i had one Saturday for 4 hours feeling more or less healed, but then back into it again.. I am really struggling. Lots of crying spells / hopeless feelings etc.

 

So sorry to hear that, Klungo  :'(  I'm just really in disbelief - still - that this is happening to me/us. I guess even after 4 years, I still don't accept the process.  I can kinda/sorta still "feel the healing" underneath the awful torment, but it's tough. 

 

Good to hear you're getting breaks here and there. 

 

Hang in there friend.  Thanks for reaching out.

 

WR

 

It's brutal, I can't honestly believe this is so hard again either.. it will definitely be the worst I've been since 21/22 and overall I can say it's not as bad, but the mental stuff has been awful and the physical too, but if it was just physical I could handle it better for sure.

[[NY...]]

yep, ditto.  last time it was this tough was month 22 for me. I've even had new symptoms,  like pain so bad in my legs that it's hard to walk.  Thankfully that one seems to have passed yesterday .  ugh, what the hell?  And yep, mental stuff galore. ..weeping, dp/dr, OCD, depression, panic, paranoia, on and on.  gross.

 

Hang in there Klungo.

[[Kl...]]

Yes lots of pain here too especially legs. Been waking up crying most mornings.. just feeling like I'm going crazy with all the agitation in my mind and body..

 

Never need more reassurance than lately in a LONG time.

 

[[lo...]]

I had pretty good 2-3 weeks with bouts of anxiety here and there.

not working / traveling / distraction definitely helps, I had a good short vacation where I did not think about any w/d issues.

 

[[NY...]]

Locutus - great news, thanks for sharing!  so glad you were able to enjoy time away

 

Klungo, the leg pain is new to me.  I just carried on as I normally would - yoga, walking, etc.  It didn't seem to make it better, or worse, so I just kind of viewed it as "phantom pain" vs. something actually wrong with my muscles.  Who knows.  I'm so used to discomfort as this point.  And yes, I empathize with your frustrations and fears.  Windows prove to me this is what healing feels like, and recovery is on the horizon, but it's so hard to believe when it gets bad like this. 

 

Sending healing thoughts to all buddies here. 

 

WR

[[br...]]

 

I have had pretty consistent on and off leg pain all through my taper and recovery . It first appeared when I was in tolerance and was much , much worse in acute . I have also had the same sort of pain in my forearms . Although awful and worrying it is simply a sign that the receptors are doing their best to return to the normal state of balance and harmony and that healing is happening .

 

I got a good report on the second look mammo . It feels great but ten long days of waiting for the test loaded my C.N.S. with extra stress . I am in a bit of a setback as a result but I'm still much better than I was just a few months ago .

 

So my friends hang in and join me in my favourite mantra . ' Everyday in everyway we are getting better and better ' . Believe 

[[2t...]]

I have pain, neck and arms that seems to be getting worse and only large volumes of motrin seem to help but I hate taking NSAIDS as they mess up your stomach and liver. It started off as muscle cramps at the end of my taper and through my withdrawal and progressed.

I am a bit worried about the pain, joint and muscle so I am investigating who to go and see about it.

Rabbit great news on your second test, Although I seem like I am a bag of illness I to have to go for an upper GI next week to see if I am 3 years clear from lymphoma. That's why I was put on klonopin in the first place.

I really just want a normal life back, to top it off I had to fly today from my home in Southern Florida (read warm) to Buffalo NY and it is really cold (15 degrees going to 11 tonight) and looking out of my hotel room window it snowing and windy.

I still remember July 2015 when I was oblivious to Cancer and Benzos, 3 1/2 years seems like an eternity ago.

 

2trusting

[[Ne...]]

NYCWR , thanks for pointing me in this direction. I feel a little less stressed reading that there are others who feel similar. I’m at 30 months off. I get a few days here and there where I can get out for a few hours, but I’ve been mostly housebound. The physical symptoms are weird and sketchy, like pinky joint pain and some stabbing head pains that come and go. And the never ending insomnia and all that comes with it😩 But the mental symptoms are the worst...

the looping thoughts, health anxiety, and fear of never getting better are causing depression and lots of crying. I’m also really needing to hear some success stories at this far out. Anyone? Bueler?? Thanks for inviting me over. Even if I’m shy about posting, it feels good to read through. It seems like a “safe place”. Still in the world where family and friends don’t get it, so thanks to you all here.

❤️New Girl

[[br...]]

 

Glad to have you with us . The good thing is that we all will recover from the benzo nightmare . The bad thing is that for some of us it takes a long , long time . I'm 80% there and very grateful . At the moment I'm having a set back because of the stress brought on by a second look mammo . But even with the setback I'm way better than I was a few months ago . If you look at the ' Ashton Manual ' you will see the long list of symptoms . Many are really bizarre  and all of them are unpleasant and can mimic just about any illness or mental condition out there .

 

You will get through this . You are way stronger than all of this .

[[NY...]]

2Trusting - sorry to hear about the pain issues.  I know this has been a difficult road for you, and I'm wishing you complete relief asap.  Good luck with the move back to Snowy NY.

Braverabbit - thrilled to hear about the mammo results .  Thanks for always being a source of hope and encouragement on these boards.  Excellent news that you're felting around 80%!

 

NG, good to see you here!! I'm in this with you until the bitter end, my dear friend.  I've read that 30-36 months off is when a lot of folks heal, and even if it takes us a bit longer, we've made it through the worst part.  Mental symptoms are by far the worst aspect of this for me as well, but it WILL end, for us both.

 

Love and hugs,

WR