The Long Hold Support Group

[[Va...]]

I'm so grateful to all of you. I have hope even though things are still bad. Love you all!

Liza

[[la...]]

I second that LIZ...I am hopeful and love reading these posts

 

today was not a good day  gut has been bad all day.  1st it was the pain all morning and this afternoon a bit nauseated which is unusual for me

 

who knows...certainly haven't eaten anything different.

 

anyways I am just going to stay right where I am although I am soooooo tempted to cut because that's what we were "trained" to do

 

please everyone keep posting and updating daily

 

I am just like Liz...have no idea how long etc.

[[be...]]

Have you guys read Nova1 thread, I think it is called the "has anyone done a long hold 2 months or longer" on Withdrawal board, she has some good

ideas and she is doing a long hold now too. I know we are all going to have Wellness and Recovery. Hang in there.   Again a shout

out to Valium Um for being here to answer, and help you all, having someone near is a big plus. Have the best day you can.

[[Va...]]

I second that LIZ...I am hopeful and love reading these posts

 

today was not a good day  gut has been bad all day.  1st it was the pain all morning and this afternoon a bit nauseated which is unusual for me

 

who knows...certainly haven't eaten anything different.

 

anyways I am just going to stay right where I am although I am soooooo tempted to cut because that's what we were "trained" to do

 

please everyone keep posting and updating daily

 

I am just like Liz...have no idea how long etc.

This is the crazy part of holding. Symptoms cycle and run their course. The one thing I've learned is my body's symptom pattern. I've also noticed that the improvements are subtle but come with time. I'm sure you'll know when to cut again as you're learning to listen to your body. That's what I'm  finding. I'll know exactly when it's time to cut as I will feel mentally and physically ready. I feel really good at this point, but I'm not ready to jump right back in. My body still says no.  I'm sure you'll do fine by listening to your body. Don't let the mindset of having to taper regardless of symptoms get to you. We're all getting off and making progress. I consider holding making progress just as much as tapering. They're both part of the process. The important thing is getting off with our sanity still intact.

[[Va...]]

Have you guys read Nova1 thread, I think it is called the "has anyone done a long hold 2 months or longer" on Withdrawal board, she has some good

ideas and she is doing a long hold now too. I know we are all going to have Wellness and Recovery. Hang in there.   Again a shout

out to Valium Um for being here to answer, and help you all, having someone near is a big plus. Have the best day you can.

Thank you!

[[fr...]]

  I'm still holding also, its been 4 weeks now.  Today my feet were burning and tingling so bad so I know it isn't time to cut again yet.  The dr. wanted me to try gabapentin but I refused it for now but if that type of burning went on for long there is no way I could stand it.  I hope it goes away.  Hang in there fellow long holders, we will get there when its time and not a day before. 

[[li...]]

That's what bothers me most--that we rarely know if we are doing the right thing. We hold waiting for sxs to abate and then something flares and we question if we've waited too long. I'm still hoping at 30 days that 60 days will make me more stable. Praying and hoping for all of you who are trying to discern holding vs tapering.

Liza

[[li...]]

How are you doing Nova?  You're at 6 weeks?

[[os...]]

I can chime in here with some good news.

 

Today has been a good day for me, the best since I started this taper a very long time ago, this isn't just because I am low in symptoms but more to do with the clarity at this lower dose.

 

A recap on this hold so far for any new readers...

 

It took me a long time to realize I tapered too fast in the beginning, losing 70% of my dose in just over 7 months. I thought my suffering was "normal" and figured I had been on so many years I would likely have it worse than many, I also saw many others on the site here suffering also and that was probably a contributory factor into thinking what I was going through was standard and yet now I look back and see I was so far gone I didn't even grasp the trouble I was in, I was really messed up and when I crashed it was shocking how I got even sicker when I thought it couldn't possibly be any worse.

 

Any way, after the crash I used many holds and stabilized enough to eek my way down from 4 mg Valium equivalent to 2.9 mg equivalent and there I hit a wall and so I pretty much has no choice but to do a long hold but this was advised to me by my new doctor who was actually really impressed that I went from the equivalent of 12 mg Valium to 4 mg in 7.5 months, he genuinely thought I did very well to make that much progress yet I could write a book on that alone, I really suffered to get down that much but now I look back and see that I was simply tapering way too fast and that's why I suffered and even eeking my way down to 2.9 mg, I was always guessing what stable was without ever really getting there.

 

This long hold has been great for me, as I have said here before, at the start of last year, I was fatigued and not well and that was when I started to hold, 3 months later I was practising photography and was feeling much better although I still had some fog and some fatigue and yet these symptoms lessened and I was able to live pretty well for the most part of last year.

 

I spent a lot of my time studying business and photohraphy and a would have strangers over to my home to do photo shoots and it was fun, a little stressful and hard work but I really enjoyed it and in the summer I learned photoshop and took lessons in retouching and I learned so much in the space of 6 months.

 

When December came around I flew to the UK and walked the airports from check in to security and then to the lounge and then then long walk to the boarding gate, at the other end the same and then caught a train nearer to my destination, I did this all on my own and a year prior there was no way I could have navigated the airports on foot, I would have needed wheelchair assistance and even more than that, I would never have been able to travel alone, no way, so that was proof enough for me that this long hold was working.

 

The only thing I noticed during my time away was a little low energy and some brain fog, yet it was slight but enough to bug me, I still felt slightly impaired and that frustrated me but much of the time I was able to largely forget it and I enjoyed Christmas for the most part, appetite was good and I felt pretty much 85% on a good day and rarely thought of withdrawal.

 

When I returned home at the start of January, I started to feel the effects of the trip, it had been over the Christmas period and family stress was quite high as is with many families at that time of year, I was glad to be home but then I threw myself back into studying and yet I somehow knew I should really take a month out to just chill as I started to feel a bit off, then come the end of January I wasn't feeling so great and figured I needed a holiday to get over my holiday and so I decided not to put any pressure on myself to get back to the photography for awhile, I felt like I needed some time out and I suspect the trip took more out of me than I realized.

 

February came around and I wasn't feeling great and then when I was almost out of pills, I emailed my doctor and he answered to say that he was retired and could no longer prescribe me and that was when my anxiety came back, I mean, I am sure you can all appreciate the worry of being cut off and I became very anxious and I could feel myself sliding backwards.

 

I did get a new doctor and all was sorted but it took weeks and it was very stressful but all was resolved in the end yet I found myself in a very anxious state and then I guess I had my first wave... I felt terrible for about a 2 weeks straight, bad stomach issues, high anxiety, loss of appetite and fear and depression, I was back in the nasty stuff again and it really worried me as I thought maybe I had reached tolerance or something and I was literally at a complete loss as to what to do but I held and eventually things got better again, yet when in the middle of the wave, something happened, everything became much more vivid with my vision and outlook and yet it was not pleasant as everything was over stimulating, I hated the TV and music and I had hypercausis also, everything was so loud, it was horrible BUT when the wave passed, I noticed that the brain fog I had before was mostly gone and in it's place I have a clarity that I had not had since I started this taper or even started the drug, so something good happened in that wave and yet it has taken me awhile to adjust to this new level of clarity.

 

The GOOD news is I feel better, I am not having a "window" but I am starting to feel comfortable at this level now, I think the stress of the trip and then studying without a break and then my doctor retiring simply proved to be too much stress for me, I also had financial worries at the start of the year also which was not good for me either, so lumping all those things together, it really is no surprise I ended up suffering a set back, I do not know if that wave was inevitable, it likely would have happened any way as without it, I would not have this clarity that I have now, the wave was likely a part of the stabilizing process and now I can say that I am starting to feel truly stable for the very first time since I started this taper, I felt pretty good flying to and from the UK, about 85% well and yet I did not have the clarity I have now, it's not 100% clarity but it feels like I am 90% there and I am figuring that maybe, just maybe, my healing is finally catching up to where I am right now, I do not expect to be totally symptom free as I do not consider stable as being 100% well but I can say that I am definitely heading in the right direction now.

 

Again, this is not a window but today has been a good day, I have swept my house and have felt pretty normal for the most part and my mind has never been this clear, I can actually feel that I am more connected to life than ever before, I feel different to when I was away on holiday and I feel different to last year, I feel more awake and alert and I definitely feel more clarity.

 

It was a rough past month and I will admit that I am still a bit fragile from it but I am starting to feel even better, I noticed today I was starving hungry and I have not felt that feeling in over a month and so my appetite is back...

 

Lastly, I just wanted to stress that although I am not done tapering yet, I feel better and have more clarity than ever, it's almost like I can sense a little of authentic life again, almost... in my wave, I think my senses kicked into overdrive as that is a part of healing and all I had to do was wait and then adjust to this new level of normal and yes, it's a shock at first because I am not used to this kind of clarity so for awhile I was like a rabbit caught in headlights and yet now I am starting to enjoy this feeling now, it may take a few more weeks or even months but I am on my way to feeling better than ever.

 

I know I have to go back to the taper at some point and yet maybe, just maybe it won't be as bad as it was before, yet it might be, I just don't know but I do know that if I had not held for this long, then I would not have been successful in getting lower, I would have had to reinstate... I am hoping and praying that I continue to get truly stable and when I restart my taper, it will be tolerable, smooth even although I am not expecting that, yet it could happen, I won't know until I start to reduce again.

 

I am logging out of BB's after this week for awhile and will come back when I have finished my nutrition studies and will post a ton of lists and daily values in stuff in the foods that help us heal support group and I will post here in this thread every month with an update but as I am not tapering until after the summer, I want to try and get back to my photography for the spring and summer and maybe live life a little also but I feel good and although it may take awhile longer for my stomach to right itself, I genuinely feel this hold is working, again, like I say, maybe the wave was a necessary part of that but I am sure the stress triggered it but I feel better for it and I am starting to feel LIFE for the first time in years.

 

I think I needed this long hold to make up for the over rapid taper, finally I feel things are starting to sync and so do not be scared of holding, if you feel bad now, tapering will not fix it, holding until everything improves is the best way forward, if we are physically and mentally not good, take a real break and let the brain and body catch up, it may take time, initially it took me three months, so for those 6 weeks or so into a hold, keep holding, things WILL start to settle, trust me on that, it really will get better.

 

Thanks to everyone who has contributed to this thread and elsewhere, long holds allow us to recover and catch up, I am convinced of that so be kind to yourselves and take time out if symptomatic because that is a sign that we need a break, we have to listen to what our brain and body is saying, sure, we all want done but far better to aim for some wellness and if that means a long hold, take it and give the brain and body and nervous system a chance to recover, then start tapering again when you feel strong enough, extremely high cortisol and constant stress is not good for the brain and body, so have a rest and be patient, wellness will come.

 

 

[[os...]]

That's what bothers me most--that we rarely know if we are doing the right thing. We hold waiting for sxs to abate and then something flares and we question if we've waited too long. I'm still hoping at 30 days that 60 days will make me more stable. Praying and hoping for all of you who are trying to discern holding vs tapering.

Liza

 

lizagal, please read my post above, when you start to stabilize, you will no longer stress or need to pray, you will be fine. Try and stop worrying, Builder held his dose for 2 years, I have been holding 15 months now... all it has done is allow me to feel better.

 

 

[[Va...]]

"I think I needed this long hold to make up for the over rapid taper, finally I feel things are starting to sync and so do not be scared of holding, if you feel bad now, tapering will not fix it, holding until everything improves is the best way forward, if we are physically and mentally not good, take a real break and let the brain and body catch up, it may take time, initially it took me three months, so for those 6 weeks or so into a hold, keep holding, things WILL start to settle, trust me on that, it really will get better."

 

[[li...]]

Thanks so much OSCAR!! Knowing you pulled out of the wave by holding is so encouraging because you know in the middle of trying to figure out if you should hold, updose or taper, you make yourself crazy. Blessings to you in the days ahead!  Enjoy the photography--the things you posted are beautiful!

[[os...]]

Hi Buddies!

 

I have been meaning to write in this thread as I am considering a new hold in my K taper 

 

My last significant hold lasted 4 months last summer through to November after months of tapering from 4mg down to 2mg. I was so glad to get to this "half-way" milestone and be done with the hassle of having to cut & weigh my doses as I only needed to work with whole pills again. I had a great summer and felt symptom-free (still fatigued but that's the way I've been since I was put on meds, more or less  ) People were telling me they could see differences in my personality coming out 

 

I took a break from BBs, a break from the "identification" with benzo withdrawal. I know it did me A LOT of good.

 

After the summer, I knew I needed to resume my taper but kept putting it off LOL.

 

However, late in October, symptoms just re-appeared seemingly out of nowhere and I knew it was time to start cutting again. And it was, at least it alleviated my symptoms.

 

I was hoping to get down to 1 mg before holding but my fatigue seems to be ramping up just now, and it is the reason why I initially decided to get off K. So when I decide to hold I'll make sure to come post here - I am quite positive that I will be able to write about progress 

 

We all need a break every once in a while, our bodies go through tremendous amounts of stress and I do believe that holding is a form of self-care  An investment in being benzo free 

 

Best wishes!

Julz

 

Thanks for posting this Julz, another BB who has found respite in a longer hold.  :thumbsup:

 

 

[[os...]]

 

Thanks so much OSCAR!! Knowing you pulled out of the wave by holding is so encouraging because you know in the middle of trying to figure out if you should hold, updose or taper, you make yourself crazy. Blessings to you in the days ahead!  Enjoy the photography--the things you posted are beautiful!

 

lizagal, please remember that I took a flight to the UK on my own, I went to a huge party the day after I arrived in the UK, so I had not even recovered from my flight, a week later it was Christmas and it was stress, stress, stress with family but that's Christmas I guess, then I returned home and had financial stress, then at the same time threw myself into studying again without having a break and believe me, I needed one, yet I also wanted to get back to my learning and then when my doctor retired, that proved to be too much and so really, it was just a case of excessive stress that likely lead to my wave, yet I think it might have happened any way as I was not truly stable (although not far off it), the wave cleared my brain fog and I now feel awake for the first time in years.

 

Sometimes, we have to let this go and trust in the ability of our brain to figure things out, the brain is a truly amazing organ and we need to have more faith in that it will right itself given enough time, we do get stable but this can take 2 - 3 months (Reg Peart said 2 months, for me it was 3 months), my point is, it takes as long as it takes, just be patient, you will start to feel better soon BUT the less you stress about it, the better, the less you stress the sooner you will start to stabilize, don't worry, time is all it takes and you will get there too.

 

Lastly, when you do start to stabilize, try and stick to very safe places on this site and even better, take a break and focus on other things for awhile, this will further cement your wellness and you will feel heaps better, by this I mean that taking a break from benzoland is so good for us and allows us some sanity and true respite from all of this, use this time wisely when you feel better, take it easy but spend time doing things you love and really give yourself a true holiday from anything withdrawal related.

 

Don't be freaked out by my wave, it was 2 weeks and it wasn't pleasant and I panicked and thought all sorts, read my posts over the last 6 weeks, I was desperate and thought the worst, when in fact, my brain was likely just doing the last bit of catch up, I feel better now that I felt last year, on a good day last year I was 85%, now I feel I am 88% and will likley feel 90% if I carry on holding, I truly do feel as if I have woken up and it makes sense that I hold here and allow myself plenty of time to adjust to this new clarity, it's happening, I am not saying hold for a year or two years, I am just saying give it up to 3 months and you will feel better, then you can choose whether to carry on having a break or carry on tapering, just try and stop worrying, holding never hurt anyone, if anyone ever gets in trouble, I believe they simply have moved up and down too much, tapered too fast or done something wrong, if we hold at a steady dose, given enough time we will feel better, trust in it as stressing about it will only cause more anxiety, try and have faith, all you gotta do is be patient and let time pass... all will get better, I promise.

 

 

[[os...]]

 

Now I am off here to live life a bit now... I might take awhile to fully feel comfortable here but it's happening, for me, after 26 years, it's common sense that waking up is going to feel strange, so I am allowing myself this time to get used to this clarity, it's all still very new to me but I am starting to feel really good now... all holds are really are a way to allow our brain and body the chance to adjust and calm down and when that happens, symptoms start to dissipate and anxiety starts to lessen and then stability comes, it just takes patience but far better than pushing ahead when feeling bad as this never helped anyone feel better, it's evident here in spades, if we hold, we allow our nervous system time to calm down and settle and when it does, we automatically start to feel better.

 

Take care everyone, I'll check in in a months time.

 

 

[[wa...]]

Hi - all

Just want to follow this thread -- maybe I already have.  I'm struggling with underlying health issue which is really getting overwhelming in my taper and think I have to hold.  WBB

[[...]]

[...]taking a break from benzoland is so good for us and allows us some sanity and true respite from all of this, use this time wisely when you feel better, take it easy but spend time doing things you love and really give yourself a true holiday from anything withdrawal related.

 

:thumbsup:

 

The word "respite" is spot on!

 

Lizagal, I truly empathise. We are doing the best we can with the information we have, and that alone earns us all a huge pat on the back! It can sometimes be a trial and error process, but at least if you try, you'll know how this pans out for you at this time. Of course I do hope you will find relief through holding 

 

The "science part" about holding is that even though we are no longer making reductions in our doses, drug plasma concentrations still decrease for awhile depending on the rate of your reductions and half-life elimination. The longer the half-life, the longer it takes for this concentration to stabilise. "Theoretically" that would mean that our bodies are still going through withdrawal for weeks or even months after our last reduction, if that makes sense. So we are really allowing our bodies to catch up with the cutting we've been doing. IMO...

 

My fatigue is really making me think I should take this break from my daily micro-taper and hold at 1.25mg... there is more to life than a long black tunnel 

 

Best of luck to All!

Julz xxx

 

 

[[li...]]

Thank you so much Julz!!! I feel so blessed to be here on BB instead of the microtaper group I was in on FB. I got surly responses when I asked questions about why I was having such difficulty and was told not to hold more than 2 months cuz of tolerance. I finally feel like I'm being talked to like an adult who has some hope of this getting better!!  I'm still only at 32 days so hoping for better things and a better summer than last summer.

 

After two horrible Ashton tapers back to back in 2010-2011, I would love to be able to show the world it's not only possible to survive this, but to even somewhat thrive in the midst of it. I had no hope of anything but time healing me, but even after 3 1/2 years I was only 85% healed. I would take 3 1/2 years to get off now if it meant quality of life and no more psychotic insanity and a brain that is mush and s body that is so fragile that getting out of bed is a trauma.

 

Thank you all again!!

Liza G

[[...]]

Lizagal, I am very glad you have found BBs and feel so much better here  If we know something about benzo withdrawal, it is that there are no rules  hence having to do what YOU feel is best for YOU. It's not all about getting off the drugs but also to learn to LIVE without any chemical assistance we signed up for one (sad) day, not knowing what it was going to put us through past the few weeks of relief it might have provided... it's about turning a new leaf and this journey will all strengthen us - not only in our ability to cope with horrible symptoms - but we are learning WHO we are again. It is so much more than just "a taper"... I don't always feel that optimistic LOL but it is true, we are getting ourselves back and we will all get there, at our own rhythm, our bodies are incredibly resilient and we need to keep taking care of ourselves.

 

I really wish you all the best,

Hugs,

Julz xxx

 

[[Va...]]

To all long holders-hang in there. At just over 2 months, I'm feeling pretty good. Yesterday was just so so, so there are still ups and downs. The things that have improved are sleep (I get deep sleep without getting up every hour), cog fog is gone, muscle pain has cleared up, fasciculations still come and go but are less frequent, I actually want to get out of the house and do things instead of forcing it, attitude is better, I'm a safer driver (lol), I'm getting more done, I can relax, feelings are coming back, I can think clearly and remember better, joint pain is greatly improved, and I no longer feel like I'm in an alternate universe. Still holding because of the up and down healing pattern. Yesterday indicates I need to hold longer. I can say I'm having more good days than bad now. It gets better, I promise.

 

As a genaeral rule, it takes the blood plasma levels of the drug 2 months to drop to the level of the cut and I think that's why so many are afraid of holding longer. The problem with that reasoning is how it corresponds to the body's ability to heal. If we cut too much or too fast, we go through a mini ct in my opinion and have to follow the same healing course (albeit not as long) as those who did a ct or tapered too fast to get off. I believe if you're in a really bad way, 3 months is a minimum. Once you have consistent good days, it will be a lot easier to get back to tapering at a rate your body can tolerate. We have all these definitions of tolerance, but they are meaningless once you start a taper IMO. We have to make a paradigm shift and think in terms of taper tolerance meaning tapering at a rate that your body can tolerate and you can remain functional with minimal sxs, which includes holds when needed to maintain the tolerance of your taper and not get hit hard with sxs.

 

Nova has some really great quotes on her thread. Well worth visiting and reading! 

 

[[de...]]

Buddies i sure need some input and also some help..

 

I need to do a long hold ..I have been told that after 32 yrs of 4mgs ok klonopin that going from that to 1.75mgs in 19 months was fast..i didnt think so..but what do i know..the s/x s that come on and effected my heart rate and made me sit in a chair for 3 days was more than i could handle so i updosed to 1.93mgs.. I am hating myself at the moment cause i got better like 2 days later and thinking why couldnt i just hang on and ride it out..

 

now i am stressing the updose disappointed in myself..and now holding for what i am thinking maybe 3 months 6 months dont know at this point..

 

then i found myself making another paper with the .001gm cuts holding for 2 days instead of 1 made 2 cuts in 6 days and now not doing so well again..why cant i just except that i need to stop this and just heal some if thats possible.

 

My husband told me to stop..just stop..it doesnt matter how long this takes..but to me i am so desperate to get to zero that i have great intentions to hold til i am better even my docs told me to hold after losing mom and my son last summer more than a month but i didnt listen and i think alot of this has just built up over the last 8 months and has bitten me.

 

how do i except this updose and holding here for awhile??? I really need to do this..but then when i have a good day then that makes me think i can continue my microtaper..and i know we are all different but then i read peoples drops and think why cant i just do that???

 

thanks for any help to do what i know my mind and body needs

 

 

deep

[[Va...]]

Buddies i sure need some input and also some help..

 

I need to do a long hold ..I have been told that after 32 yrs of 4mgs ok klonopin that going from that to 1.75mgs in 19 months was fast..i didnt think so..but what do i know..the s/x s that come on and effected my heart rate and made me sit in a chair for 3 days was more than i could handle so i updosed to 1.93mgs.. I am hating myself at the moment cause i got better like 2 days later and thinking why couldnt i just hang on and ride it out..

 

now i am stressing the updose disappointed in myself..and now holding for what i am thinking maybe 3 months 6 months dont know at this point..

 

then i found myself making another paper with the .001gm cuts holding for 2 days instead of 1 made 2 cuts in 6 days and now not doing so well again..why cant i just except that i need to stop this and just heal some if thats possible.

 

My husband told me to stop..just stop..it doesnt matter how long this takes..but to me i am so desperate to get to zero that i have great intentions to hold til i am better even my docs told me to hold after losing mom and my son last summer more than a month but i didnt listen and i think alot of this has just built up over the last 8 months and has bitten me.

 

how do i except this updose and holding here for awhile??? I really need to do this..but then when i have a good day then that makes me think i can continue my microtaper..and i know we are all different but then i read peoples drops and think why cant i just do that???

 

thanks for any help to do what i know my mind and body needs

 

 

deep

He anxiety to cut hits us all.  Just force your mindset to switch to accepting a 3 month hold.  It may not take you that long, but you're finding out the non linearity of healing during tapering.  You will have good days followed by bad days.  If you're still having bad days, it's a sign you need to keep holding.  Listen to your body and you intuition, not your anxiety about getting of the drug and you'll do find.  Try not to obsess about it and embrace those subtle improvements and good days.  Holding is just as important as tapering.  We all get there at some point and I would hate to see anyone in this group or on BB have to join the protracted group (bless their hearts) because we were in such a rush to get off.

[[Va...]]

Quote from a benzo wise psychiatrist:

 

"There is absolutely no need to hurry withdrawal. Many people take over a year to do it. Healing is a slow process – your body and brain need time to readjust and regain control of the functions that have been affected by the benzodiazepines. Withdrawal symptoms gradually get better, and some people get little or no symptoms at all. Slow withdrawal will allow you to continue with your normal life and create alternative strategies for living without benzodiazepines. With you in control, a slow and steady withdrawal is nearly always successful."

[[Va...]]

From benzo beware site:

 

Listen to your body. It will tell you if you are cutting too fast or cutting too much. Don't be afraid to slow it down or spread out your doses.

 

Hold your taper if symptoms become more intense for a couple of days in a row. Holding is a powerful tapering tool, is part of tapering and gives the brain and body a chance to catch up from accumulated cuts. How long to hold varies from person to person. For some, a week is all it takes for things to settle down. Others hold longer – up to a month or even longer.

 

 

[[li...]]

It's this "couple of days in a row" in my microtaper that I was doing and it wasn't working so I thought I was failing. That's why I'm hoping the longer hold will stabilize me and help me actually cut faster