The Long Hold Support Group

[[Fa...]]

Hi Faith, I understand wanting to do something but holding is doing something and giving your brain a break. I only used for 12 days in October after very very very bad medical advice. I checked three sources and the pharmacist didn't say anything either. In my country, no other doctor seemed to have prescribed or encouraged it and most pharmacists (have to) warn you. My withdrawal has been terrible though. And there are no resources like private clinics and benzo wise doctors or therapists or at home IVs and so on like in the US to try.

 

Hi Cocodot,

 

I hope you read my revised reply...as I stated, I am in a wave, and I really need to press pause and review before I press post.

 

I am so sorry that you were injured after such a short term use.  What country are you in?

 

I am in Canada, and there would not have been easily accessed and informed help here, either.  And, that is the reason we find ourselves in this predicament.  We have to find out for ourselves.  The information is out there, but you have to know where to look first, and that is not in standard medical journals or on med sites on line.  It is by the community...those who are/have gone through this.  Those who have come before us and are starting initiatives.  Benzo Information Coalition is one, sites like this one, and there are others.  And, we all do it by ourselves when we somehow get the feeling that something is not right, and our intuition leads us to our first piece of information that blows the door wide open.

 

I have a counsellor I talk to.  During my sessions via Zoom, I spend my entire time educating her about what is going on with respect to the benzo crisis.  Now, this is beneficial for me during the session because I know that I am reaching one clinician who can in turn perhaps reach others.  I send her links to info, and she has seen the devastation that occurs due to these drugs through working with me.  And, that makes me feel somewhat as though I am helping this cause during this time where I cannot be out 'doing' something to spread the information.  However, when I am healed and well enough, I am pretty certain that my life path will include advocating in some capacity for this cause.

[[Co...]]

I'm from Europe. May doctors here would not have prescribed it at all or given explanation about it being addictive so to say but they do not know more than that. So I'm very unlucky. I have filed a complaint against the GP as I specifically asked something habit forming, wrote a very bad review about the therapy center and had a psychologist drop the psychiatrist of their list of recommendations and talk to her colleagues about it. I'm also trying to write a letter to the minister of health care as he's looking at proposing a new patients' rights bill. And although I am certain this would not happen to anyone else - definitely not the way it has happened to me - I still want to protect my October self.

 

I probably get so sick from this because I'm highly sensitive and cannot even handle ibuprofen. That's why I wanted natural aids. Also, because I was in cortizone withdrawal without realizing and no doctor explaining me properly. I guess that makes me kindled. I felt extreme fog on this those 12 days though. It was stupid to continue taking it and not really realize enough. But had three sources telling me to take it. I don't get how people can take 0.5 mg during the day. It knocked me out. Another clue it wasn't safe.

 

All I wanted from the center was therapy. I left a lot worse than I came in. I still cannot believe it. Never again therapy for me.

[[Fa...]]

I'm from Europe. May doctors here would not have prescribed it at all or given explanation about it being addictive so to say but they do not know more than that. So I'm very unlucky. I have filed a complaint against the GP as I specifically asked something habit forming, wrote a very bad review about the therapy center and had a psychologist drop the psychiatrist of their list of recommendations and talk to her colleagues about it. I'm also trying to write a letter to the minister of health care as he's looking at proposing a new patients' rights bill. And although I am certain this would not happen to anyone else - definitely not the way it has happened to me - I still want to protect my October self.

 

I probably get so sick from this because I'm highly sensitive and cannot even handle ibuprofen. That's why I wanted natural aids. Also, because I was in cortizone withdrawal without realizing and no doctor explaining me properly. I guess that makes me kindled. I felt extreme fog on this those 12 days though. It was stupid to continue taking it and not really realize enough. But had three sources telling me to take it. I don't get how people can take 0.5 mg during the day. It knocked me out. Another clue it wasn't safe.

 

All I wanted from the center was therapy. I left a lot worse than I came in. I still cannot believe it. Never again therapy for me.

 

Not this kind of therapy, anyway.

 

Kindled is when you are on a benzodiazepine, have come off at one time, and then go back on it again.  That is kindled.  So, you have not been kindled with the cortisone.  So, that is a good thing.  You have had a bad reaction to a benzo.  And, you have done all you can to help yourself and to help others.  That is all we can do.

 

You have done a lot to correct things in the system there.  That is great work!  A great achievement.  I have great respect for that.

 

Now, we hold.  And, you are on an amount that will be very manageable to come off of.  I know it has been very difficult.  But, you will hold, stabilize, and come off the remaining small amount well.  And, we will have both learned much in this.

[[Co...]]

Thanks for the positivity, Faith. I just came back from a new GP and she's a good doctor. She read all the info I gave her last time and is the only one so far willing to go over all my symptoms. She also recognizes it's the benzo. She can't believe my unfortunate story but at least she'll follow up and help taper me very slowly.

[[Fa...]]

Thanks for the positivity, Faith. I just came back from a new GP and she's a good doctor. She read all the info I gave her last time and is the only one so far willing to go over all my symptoms. She also recognizes it's the benzo. She can't believe my unfortunate story but at least she'll follow up and help taper me very slowly.

 

That is great news, Cocodot.  I am very happy for you!

 

Warmly,

F

[Guest [...]]

Hi Faith

 

It’s perfectly natural for most of us to bounce back and forth from accepting a long hold to fearing the potential for prolonged suffering, but you cannot taper in the state you’re in.

 

At the moment, you are seeing everything (including your future) through a filter of intense fear. Try and notice those moments where you experience fleeting moments of confidence that you are on the right track where the mental battle in your head falls away momentarily. That’s the state of mind you want to become your default setting, that’s the state of mind you want to cultivate along the way. The more time you spend in that state of trust in a positive outcome, where acceptance seems to come more easily to you, the less stress hormones you will release and the more your symptoms will decrease.

 

Remember that this coach is speaking from their own personal perspective, based on their own personal experience, just as I am only giving you my perspective based on my own personal experience, and just because one person doesn’t seem to be able to stabilise on a longer hold (for reasons we cannot possibly know), doesn’t mean that the next person won’t benefit and stabilise from a longer hold. So for a coach to put everyone into the same basket and say that prolonged holds only prolong suffering, well, we already know that this is absolutely false in many cases, as the evidence here to the contrary speaks for itself. So I’m not saying they are wrong in all cases, I’m just saying they are wrong in many cases. I thought I would never stabilise again, however, by days 35-40, I finally started to notice subtle changes which continued until I felt ready to taper again after 100 days, and all of a sudden I could reduce at a higher rate without any intense symptoms at all. Can you even imagine trying to taper whilst you are so symptomatic that you can’t watch tv, read a book, listen to what was once your favourite music, all of which now only increase fear based reactions, not to mention the AKA?

 

How do we know the coach wasn’t experiencing less intense symptoms compared to you, baseline symptoms that didn’t get better with a hold because they were already baseline symptoms, so of course they wouldn’t get better. This only points to the whole debate about “what does stability mean.”

 

The thing about experiencing the heightened state of fear you are in at the moment, is that when your symptoms decrease, they will almost feel like a walk in the park to you because of the deeper level of suffering you have just been through. But if someone who had never been through this benzo process experienced this lesser degree of pain and discomfort, they would be absolutely horrified. Experiencing the deeper levels of pain and suffering actually conditions us to accept and appreciate the lesser levels of pain and suffering which then often appears to be more like discomfort than suffering. And we can work with this!

 

As you stabilise, that filter of fear will greatly diminish, and the lens through which you view your present and future will appear much more bright and clearer.

[[Fa...]]

Thank you WS,

 

This was print worthy, and I have it on my fridge to read often.

 

Much gratitude,

 

Warmly,

F

[[Ri...]]

I feel worse when I take the dose for a few hours the later it gets the more I feel better not always but mostly I sleep pretty well broken sleep but I say about 6 hours my main symtom I can’t handle is the brain fog dp should I try a longer acting benzo and take it at night what should I do before I jumped my nights we’re amazing all the time dosing only once a day

[Guest [...]]

Hi Rino

 

I experienced a kind of paradoxical affect after dosing when I was unstable also, but it diminished once I stabilised. I c/t’d clonazepam for 19 days and then reinstated on valium, after which, it took a considerable amount of time to stabilise. As I stabilised, these paradoxical type symptoms resolved and I haven’t experienced them since. I think you are still recovering from the shock to your system from jumping after such large reductions. If you are feeling reasonably ok before you take your daily dose (not noticing symptoms increasing well leading up to dosing), I would continue with what you’re doing… dosing at the same time each day until symptoms gradually decrease. Just make sure you’re not actually experiencing inter-dose withdrawals prior to your dosing. If you do, then let us know. It can be very difficult to detect even the slightest improvements as they occur when waiting to stabilise, which is why it’s good to write all your symptoms down every day and give them all a rating out of 10. This will help you detect and keep track of any of those slight improvements. I had no symptoms at all on the clonazepam, but once I c/t’d, I never got back to that same symptom free state, but I did eventually stabilise, and my day to day life and sensible taper rate have been quite tolerable since.

 

I wouldn’t be contemplating crossing to another benzo at this stage, as it would have to be a slow crossover, not a direct switch, and crossovers do come with their own potential complications, so it is kind of a last resort option.

 

As much as possible, try to distract yourself from focussing on your symptoms, as this will help keep your system from entering a highly stressed state, which only ever causes symptoms to increase with the release of stress hormones. Just try and accept your symptoms (as best you can), know they can’t hurt you, and trust they will resolve considerably in time.

 

Please keep us informed as time passes, Rino, and feel free to reach out for support at any time.

[[Fa...]]

Hello All,

 

As I awakened this morning, on my phone I saw a notification for a YouTube video by the benzo coach that I had referred to in my previous comment.  And, the video was titled 'Is it ever okay to hold our benzo dose while tapering.'  I thought what a coincidence.  This is now the second video he has made regarding this...and, quite frankly, I am wondering if I am hearing things through a sound mind.  Am I picking out small words and focussing on the negative?  Is there really any negativity at all in the video, or is it my lens skewing how I am hearing it?  I simply feel scared.

 

I was afraid to listen to it.  Fear is always so much more potent in the morning.  But, I listened.

 

In conclusion, his opinion is that it's okay for a month...maybe a few.  But certainly not for many, many months.  I'm not going to post it on here.  If interested, you can easily find it.  He still does not agree with tapers that last years and years likening it to taking one huge punch versus being punched over and over and over again.  I can't explain the whole video, and I certainly do not want to turn this into a debate.  I just felt very triggered because I know how much I'm struggling, and I know I am at risk if I don't manage this properly.  There has been just too much trauma.  Everyone can handle things differently.  I know that I am not handling things well.  My NS is not handling this well.  Mentally, emotionally, psychologically, I am not handling this well.  And, life circumstances have a lot to do with it...that is only natural.  For me, this turned into a life saving mission in November.  AKA plays a large role in this.

 

So, I just needed to share this because I feel quite vulnerable right now.  I may feel stronger as the day moves forward.  Right now, I feel as though I have failed myself.  I had a second chance to approach this properly, and I still rushed it and got myself into a heap of problems.  I am praying that I can move myself out of this so I can continue to move forward.

 

I want to mention that I am not saying that this benzo coach is not good.  I have had a session with him, and he is a very nice and caring person who has faced his own version of hell coming off benzos.  They say the worst pain is your own pain.  And, there can never be comparisons...ever.  At this juncture in time, I am simply not in a position to afford coaching.  If I could, would I?  Sure.  But, in Benzo WD, we are not very reassure able.  It would take talking everyday while in this state, and that is simply not affordable even for many who are still able to work and are in a better financial framework.  We need constant reassurance.  Are we going to be okay?  Are we going to heal?

 

Really...this is just some ramblings as I am feeling triggered and quite afraid.  I do what I can in my circumstances to work at healing as I move through this taper which is now on hold.  But, why do I feel as though I am never doing enough to help myself?  I can say this...I have had one window for a few hours over a month ago now.  I saw things as my 'old self', and none of what I am talking about now would even phase me during that window.  I just knew I was going to be okay.  Everything dropped away.  This nightmare dropped away for a few hours.  I wasn't 100%, but I was probably 70% myself.  So, I am very aware of what the brain is doing.

 

Didn't really accomplish much with this post other than just getting some thoughts and feelings out.  Again, I am not trying to speak badly about anyone.  It is my body's reaction to information that it feels is a threat...and, nothing in the video was threatening to a healthy minded person who is stable.  But, for a benzo brain, it takes very little to scare us.  I just don't want to be 'that person' who completely loses themselves to this.  I am trying to reconcile all that has happened and I am really trying to see the light at the end of the tunnel as I hold this taper to find more peace in this.

 

Warmly,

F

 

   

 

 

 

 

 

 

[[Co...]]

Hello Faith,

 

This forum is for getting your thoughts and feelings out so it's good you are posting them. I do think personally it's better to hold when things are bad. It probably won't work for everyone but I have experienced improvements with a three month hold. I also do think small slaps in the face regularly are easier to deal with than one huge punch. But to each their own. It's good to get other's input but this journey is so individual that's why everyone recommends to listen to your body. Although that's difficult and I don't always understand what my body is trying to say.

[[Fa...]]

Thank you for your reply, Cocodot.

 

What improvements did you experience during your three month hold?  What was the reason for your decision to hold?

 

Warmly,

F

[[Co...]]

My GP had cut me by 40% and I was completely bedridden. Couldn't sleep, couldn't eat or drink or hold down anything. Ended up in the ER but here they didn't want to give an IV because my organs were still okay. I couldn't think or speak anymore. I was a complete zombie. I saw blue spots and had auditory hallucinations. Those things went away with holding and my cognition improved. I still have the tremors and burning skin and tingling and very bad sleep as baseline, among other things.

[[Co...]]

But wow, Faith, you took for 10 years and came off without incident. That was lucky. First time user for 12 days and horrible taper/withdrawal.

[[Fa...]]

But wow, Faith, you took for 10 years and came off without incident. That was lucky. First time user for 12 days and horrible taper/withdrawal.

 

I know!  That was many years ago.  It was in 2007.  Who knows why these things happen.  There is no rhyme or reason for it.  Now, the second go around I got snagged...and, snagged badly.

 

It is not fair that you are going through this after only a 12 day run with the med.  I am so sorry you have had to endure this.  And, there are so many just like you.  I was shocked to learn of this reality when I first started to really educate myself about what was happening to me.  I may as well have been on it for the first time because like you state, my first taper was just walking off.  I didn't even know what a benzo was even during my second period on it.  I was ignorant.  And, I worked in the medical admin field for all sorts of practitioners including psychiatrist, psychologists and social workers.  I just never gave it a second thought.  So, it leaves me speechless.

 

I am going through it now in a big way.  Many times in hospital.  Two stays.  The Akathisia has really had the largest impact.  So, lucky the first time, but it would only have been a useful experience if I had known just how lucky I was and what it was I actually walked off...the dangers of it.  But, I never knew.  So, I couldn't use that experience to help me to not make the same error in taking it again.

[[Ri...]]

Hi thanks for helping me out the thing is I’ve been holding now it’s almost 3 months some of my symptoms r getting worst some better but I was better on first month than 2nd I don’t know if there interdose withdrawals I just want my brain to come back to me the brain fog and unable to do anything with my brain is reall worrying me should I updose or dose even at night I don’t know what do do please give me guidance I write all my symptoms down everyday and they have been the same ones cycling now for a month weakness head spinning lightly head squeeze lightly sweating armpits brain fog and analogy to focus on stuff. Weak appetite gets better time to time waves of depression I don’t know what to do

[[Pa...]]

Hi thanks for helping me out the thing is I’ve been holding now it’s almost 3 months some of my symptoms r getting worst some better but I was better on first month than 2nd I don’t know if there interdose withdrawals I just want my brain to come back to me the brain fog and unable to do anything with my brain is reall worrying me should I updose or dose even at night I don’t know what do do please give me guidance I write all my symptoms down everyday and they have been the same ones cycling now for a month weakness head spinning lightly head squeeze lightly sweating armpits brain fog and analogy to focus on stuff. Weak appetite gets better time to time waves of depression I don’t know what to do

 

Lets discuss interdose withdrawal, I'll describe what it feels like and if you can, let me know if you feel this.  Medications are designed to meet certain needs, take Ambien a sleep medication, its purpose is to put us to sleep but only for a certain number of hours so it designed to wear off quickly, we call that a quick acting drug or a short life.  Valium on the other hand is designed to provide many hours of therapeutic use, its called long life or long acting.  Ativan is a short acting benzodiazepine, its designed to get in, fix the problem and get out.  The problem with this is once our body becomes dependent on the drug, it begins to wear off way before our next dose and we feel it, big time.  While tapering Ativan, many members have to split their daily dose to keep their blood serum levels of Ativan constant, many Ativan users will dose 3 times a day.  Can you tell us if you're experiencing heightened symptoms during the day or night well before its time for your next dose?

 

 

[[Ri...]]

My symptoms are more hightened when I get up an hour after I dose I feel very weak and getting weaker by the day with my head spinning and night gets better but the brain fof and concentration stays with me all day long feel like every day passes I’m getting to be bed bound I’m really scared

[[Pa...]]

It sounds like your reinstatement has been a nightmare, no relief and you're getting worse.  I honestly don't know what to tell you, you have choices but they're all bad.  Go higher in dose, hold longer in hopes things will settle or press on with your taper and hope reducing will provide some relief, and if it doesn't, then at least you'll be benzo free and your body can begin to heal.

 

I'm so sorry, I know you're in a bad place.  Are you taking any other medications, I really wish you'd fill out your signature or provide us with more detail so a team member could add it. Add your history/signature

[[Ri...]]

My doctor gave me vallium what do u think if I switch over to vallium and hold at least I know interdose won’t be a problem

[[Pa...]]

My doctor gave me vallium what do u think if I switch over to vallium and hold at least I know interdose won’t be a problem

 

I'm not sure you're dealing with interdose but before crossing to another benzo (which can be challenging) I'd split the Ativan dose and try that first.

[Guest [...]]

My doctor gave me vallium what do u think if I switch over to vallium and hold at least I know interdose won’t be a problem

 

Hi Rino

 

I agree with Pamster - I would probably try splitting my doses of Ativan and dosing 2 or 3 times spaced apart over the day and see if this helps, just in case inter-dose withdrawals are behind your inability to stabilise.

 

If you eventually choose to go with the Valium, just know that not everyone does well crossing to valium, so there is a potential level of risk associated with that crossover. From your post, it’s seems that your doctor expects you just replace one (the Ativan) for the other (the Valium), which is a direct switch, not a slower crossover. The problem here is the short half life of the Ativan and the long half life of the Valium. When you stop the Ativan, your blood serum levels will drop very fast as the medication quickly leaves your body, and the Valium can’t buffer or compensate for the loss of the Ativan because it takes quite a long time for your blood serum levels to reach a therapeutic level to compensate or buffer for the Ativan because of the long half life of Valium. This could cause a considerable increase in symptoms for those initial several days or a week after the switch. Valium is also a very different drug to Ativan, so it could potentially take some time to adjust to the different affects of the Valium. The first few weeks of Valium can also leave you feeling overly sedated and drained of energy until you adjust. A number of members also find that Valium causes a level of depression initially, which does seem to subside over time.

[[Ri...]]

Thanks guys I appreciate it my main symptoms right now are extreme weakness for about the first 2 hours I wake up squeezing of my head and my head spins pretty much all the day and my brain has hard time focusing and brain fog not myself in general my dose is really small .25 to cut into 2 doses is possible but not more would it be better for me too up dose to .25 when I wake up and .25 at night and hold there till I stabalize I need to be somewhat functional I rienstated only 6 days after being off how can that do all this damage I always had windows of normalcy during my hole taper and at .25 I had windows now I have zero

[Guest [...]]

What strength are your tablets, Rino?

[[Ri...]]

My strength of tablets are 5 mg for diazepam if your asking