Looking for others who have tried many things and can't stabilize

[[tr...]]

Fuzzy, I know what you're going through. I have also felt strange in my own home. I was afraid of my own bedroom, and still lying on the couch. I was terrified that someone would call the door and disconnect the bell. It's strange, the nervous system gives terrible symptoms during the healing. So I understand you so well.

[[Aj...]]

Fuzy I'm in a similar situation but not been as long as you and can't imagine having the symptoms I have foe a year or more.

 

I am seriously considering reinstating and trying to stabilize but, like you, am terrified it won't make the new symptoms go away.

 

I was just reading this thread

http://www.benzobuddies.org/forum/index.php?topic=169871.0

 

It is quite interesting.

 

[Guest [Fu...]]

There seems to be a debate on whether or not once one is kindled and in tolerance that there is no stabilization and that person just has to suffer through a much more difficult taper than someone who isn't kindled or in tolerance vs those who say updosing or holding will always help. I think everyone is different and know that for me updosing has never helped and holding hasn't seemed to either.

 

I'm also not sure about method of tapering as I have always micro tapered but it seems that some think that is actually worse as it give a the brain no time to adjust. However I'm so sensitized right now that I don't think my system could handle any cuts beyond tiny ones. I just don't know what to do moving forward there is absolutely no guarantee in any of this.

[[Ma...]]

How long did you try to stabilize?

 

From what I understand after kindling a lot it will take you much longer to stabilize on a dose, if you've only tried one month that might not be enough, from what other people mentioned on the forum it can take 3, 6 or more months for some people after they've gotten messed up.

 

I've been stabilizing for a month now and some symptoms have gone (anxiety, insomnia etc.) but the visual symptoms and atrocious Tinnitus remains. I'm in the dark too and extremely scared that those will not improve, but the general consensus is to give stabilizing a longer try.

 

You absolutely need to stop messing around like that, your signature is insane and it's no wonder you're so kindled now. No matter what state you are in there is only one proper way out from there on, you have to stabilize (I can't tell you how long that would take) and then taper as slowly as your CNS lets you. In your case that might take years. It'll take me 2 years to get off 2.5mg Valium because of how sensitive I am, it's unfair and many people have it easier but that's how it is, life is often unfair.

 

Updosing seems to be a bad idea unless you're very recently made a cut that was too big, it can make you even worse. If liquid tapers don't work for you then buy a scale and dry cut, that's what I do.

[Guest [Fu...]]

Yeah my history is insane that's why I'm scared that I'm not going to stabilize and I'll be in this horrible, unbearable state for the duration of my taper.

 

But at the same time I've talked to people who were cold turkeyed off 4 mg's and reinstated and put on and off other many other psych meds and I seem to be just as bad as them despite never having cold turkeyed. I didn't realize how serious making changes were but now I'm paying the price. I don't think I'll ever stabilize until I'm off and I'm doubtful I can get there in this state.

 

Also I was always told here and in FB groups that "kindling" only happens when someone goes completely off and reinstates so I had no idea how badly I was screwing with my CNS BUT I certainly feel like an idiot looking back at it now. After my initial failed taper I could not tolerate liquid so I panicked and just tried to find some sort of taper I could handle all the while making things worse. That's why I made this thread, to talk to others who have done the same I know not everyone has a squeaky clean linear taper. In fact that is probably more rare than someone who has had failed tapers and tried updoses and other meds and the like.

 

If you kindled each time you took an Ativan dose every four days then imagine what I did taking a Valium once a week for months last year in addition to all the changes I made. I'm F*CKED!

[[Gr...]]

For the first two years of my taper, going from 2.5mg of k to 1.5mg, I used xanax as needed.  I didn't even realize that it could cause problems and it wasn't until I joined benzobuddies and read other peoples' experiences that I decided to quit my xanax as needed.  I do think that the beginning of my taper was rougher because of that, but it wasn't anything close to the pain of kindling, where nothing at all would relieve the anxiety and the magnification of everything to my senses. 

 

Everytime I see you type out your timelime, I try to remember how mine went.  So here is what I can remember:  I reinstated from .25mg of k to 1.5mg, and then slowly moved up to 2.0 and then 2.5, and then 3.0 and then added in more xanax regularly.  I started my reinstatement in Nov. 2008.  I was feeling very very awful in March 2009.    All of 2009 was pretty awful.  My downstairs neighbors complained about our noise, in January 2010, and I got so anxious about it I was afraid to walk around and finally we just decided to move.  It was the Spring or Summer of 2010, that I finally started to feel okay again.  Not great mind you, I was still having anxiety, just from taking benzos, and I was also depressed, which was new for me, but I was functional and able to have fun. 

[[Ma...]]

The thing is there is no difference between CTing and cutting too fast, I don't know why people distinguish it here, it does the same thing to your body, it causes damage that will give you symptoms for many months or sometimes years. These symptoms will still happen even if you are still on the dose.

 

In cases like ours when we 'kindled', going back on the dose isn't what causes damages, but we're suffering months afterwards from the cut that was too fast. When you stabilize, you stop creating further damage, but the existing damage you caused still gives you symptoms for a long time, that's why people think they can't stabilize, they are getting delayed symptoms from the damage they have caused before.

 

So neither me or you can expect to feel 'good' while stabilizing after a few weeks, we'll feel better than while cutting, and theoretically we might feel better and better overall (and go through waves and windows just like someone who got off 100%), maybe if we stabilized for years we might mostly heal the damage, but nobody wants to stay on the meds so long for that. We're damaged and more sensitive, and the only way forward is to AVOID FURTHER DAMAGE, which means to never ever cut too fast again.

 

That's just my take from spending way too much time on this forum and my own experience, others feel free to disagree.

[[tr...]]

This text about stabilization can be found in Ashtons manual:

 

Updosing during withdrawal? Some people hit a "sticky patch" during the course of benzodiazepine withdrawal. In many cases, staying on the same dose for a longer period (not more than a few weeks) before resuming the withdrawal schedule allows them to overcome this obstacle. However, increasing the dose until a longed-for plateau of 'stability' arrives is not a good strategy. The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system.

[[NJ...]]

This text about stabilization can be found in Ashtons manual:

 

Updosing during withdrawal? Some people hit a "sticky patch" during the course of benzodiazepine withdrawal. In many cases, staying on the same dose for a longer period (not more than a few weeks) before resuming the withdrawal schedule allows them to overcome this obstacle. However, increasing the dose until a longed-for plateau of 'stability' arrives is not a good strategy. The truth is that one never 'stabilises' on a given dose of benzodiazepine. The dose may be stable but withdrawal symptoms are not. It is better to grit one's teeth and continue the withdrawal. True recovery cannot really start until the drug is out of the system.

 

I don't agree with this. I held for six months last year after an updose and felt better at the end of those six months holding at .5 mg of Klonopin than I did when I began the taper at 1 mg. Many people have had the same experience.

 

I believe 100 percent that people heal on the way down. And that if you cut in tune with symptoms, you can remain mostly stable. I mean I sort of feel like crap 75 percent of the time but I go to work every day and by all accounts live a "normal" life. I am even changing jobs next month.  I completely disagree that you should grit your teeth and push through. I think that is how some people end up in a very bad place.  I tried a more rapid taper previously and was in a very bad place--sobbing in bed hoping for a better day is not the way I am going to do this. Obviously, some people just can't get stable no matter what they do, which is heartbreaking. But pushing through just because Ashton says we should does not make sense to me at all.

 

 

[[Su...]]

I'm with NJ on this one as well.   While Ashton did amazing work for all of us, her work is old and we now have lots of examples of people who have had no acute phase after quitting by slowing way down -- much slower than Ashton suggests-- and by holding for extended periods of time.

People do heal as they taper -- many of us are living proof of that....

 

My longest hold has been about two months, but it did wonders for so many of my sxs.  I wasn't in that bad of shape or I would have held longer.  The Buddies I have met here who have held for extended periods 6-7-8 months have had great success with the rest of their taper or with getting off all together.  Not a "jump off" but a walk, saunter, snails pace step off.

 

So Fuzzy, with all the changes that you put your system through I think a long hold might be helpful.....imho.....

I know the tiniest change can cause havoc for a while in my body and you've made some major changes... lots of them

 

Wishing you the best!

SS

[[Lo...]]

In cases like ours when we 'kindled', going back on the dose isn't what causes damages, but we're suffering months afterwards from the cut that was too fast. When you stabilize, you stop creating further damage, but the existing damage you caused still gives you symptoms for a long time, that's why people think they can't stabilize, they are getting delayed symptoms from the damage they have caused before.

 

I have read all kinds of CNS kindling theories here, as well as on the wiki pages, but am starting to doubt it, as I haven't seen a single explanation of CNS kindling that would explain these kinds of horrifying symptoms. Yes, I may be in a bad spot, but speaking of myself, I have no doubt I would have been much worse off had I started taking Ativan every day. So, in my case, it has to do more with a prolonged use of benzodiazepines and the protracted nature of the symptoms while on long benzos long-term, rather than any kindling issues. It's most likely a neuroplasticity issue where, in some of us, the GABA downregulation and Glutamergic overactivity happen at a faster rate, regardless of how these benzos were taken.

[[Su...]]

In cases like ours when we 'kindled', going back on the dose isn't what causes damages, but we're suffering months afterwards from the cut that was too fast. When you stabilize, you stop creating further damage, but the existing damage you caused still gives you symptoms for a long time, that's why people think they can't stabilize, they are getting delayed symptoms from the damage they have caused before.

 

I have read all kinds of CNS kindling theories here, as well as on the wiki pages, but am starting to doubt it, as I haven't seen a single explanation of CNS kindling that would explain these kinds of horrifying symptoms. Yes, I may be in a bad spot, but speaking of myself, I have no doubt I would have been much worse off had I started taking Ativan every day. So, in my case, it has to do more with a prolonged use of benzodiazepines and the protracted nature of the symptoms while on long benzos long-term, rather than any kindling issues. It's most likely a neuroplasticity issue where, in some of us, the GABA downregulation and Glutamergic overactivity happen at a faster rate, regardless of how these benzos were taken.

 

I found some explanations in the Chewing the Fat section in a thread something like Explaining this to a layperson.  There are lots of scientific articles to sift through but I found in the end that the idea of kindling -- that when we have come off previously -- does indeed change the neuroplasticity factor. We are less "elastic" in bouncing back.  Seems to be true for me.  But I had to take a close look at my history to understand.  Over a lifetime these things were handed out to me far too many times....

 

Regardless we have what we have at the moment don't we?  And we're all in this together on this forum.... Or that's what I like to think.

SS

[Guest [Fu...]]

I agree with regards to Ashton. I respect her for being such a pioneer at a time when nobody was bringing any attention to benzos and how they work or how to properly come off of them but even though she obviously has experience her work should not be touted as gospel as it so often is on this forum and in the Facebook groups. Everyone is just so different and there simply are no rules when it comes to these drugs. She says that 10% is a fine speed to taper at but it ended up being much too fast for me. She recommends that everyone switch to Valium when I and many others have had disastrous experiences attempting to crossover to it. Updosing works for some and not for others. Holding works for some and not for others. There are simply no guarantees that anyone, including Dr. Ashton, can make.

[[Lo...]]

I agree with Dr. Ashton's withdrawal schedules being too fast.

 

This one seems downright laughable, considering how fast and impossible it is:

 

https://www.benzo.org.uk/manual/bzsched.htm#s1time

 

And, as the time goes, I am starting to become a huge opponent of her stance against supplements. If she says it is ok to occasionally drink alcohol, why is it not ok to take passionflower, drink chamomile tea, take valerian root or some other beneficial herbs? The natural supplements are certainly better for the body than valium. And I don't understand why she was adamant on using Valium. There are other long lasting bzds such as Librium, Tranxnene, Medazepam. Why pick the one that doctors are so unwilling to prescribe and has the worst reputations of all bzd's out there?

[Guest [Fu...]]

It has a long half life but so does Klonopin. But because I kept being told to follow the Ashton Manual I tried for literal years to find a doctor who would cross me over to Valium and as you said they are all reticent to prescribe it especially at high doses so that was time I should have spent just starting my taper from a much more stable place. Again she did a TON of good work but I think it can be downright counterintuitive to tell everyone that they have to follow her every word to the letter.

[[Lo...]]

It has a long half life but so does Klonopin. But because I kept being told to follow the Ashton Manual I tried for literal years to find a doctor who would cross me over to Valium and as you said they are all reticient to prescribe it especially at high doses so that was time I should have spent just starting my taper from a much more stable place. Again she did a TON of good work but I think it can be downright counterintuitive to tell everyone that they have to follow her every word to the letter.

 

Agreed 100%

[[tr...]]

Benzo is nevertheless a chemical preparation, a "poison". So the question is, as Ashton writes, whether you can really stabilize as much as you want when it's left in your body?

 

For each day you take a tablet the withdrawal is extended, and continues to damage the body. That's said to be, but I don`t  know if it's right, for a month as you take benso it takes a year for the poison to get out of the body. For each tablet I felt I got poisoned, and I felt a breakthrough my nervous system even more.

 

When I made a dropdown I never waited for stabilization. Stood for a few weeks, and then I continued to lower the dose (5-10%). I didn`t  want to have it left in the body more than necessary.

 

These were my kind thoughts

 

 

[Guest [Fu...]]

I agree with you on that for sure. I have also talked to people who have felt better as they have tapered and I'm certainly hoping I'll be one of those people. That's one of the toughest parts of this whole process is that we all want this poison out of our systems as quick as possible but in order to not gave horrific symptoms we have to take it ridiculously slow. If this took a few weeks or even months it'd be one thing but living like this for years is just insidious. It's robbed me of my soul, I can tell you that. I don't even remember what feeling like "me" feels like at this point.

[[Lo...]]

As toxic as benzos can be, if it keeps people alive when they reach this state of instability, I wouldn't call it poison. If it was just a poison, than removing it completely would solve the problem, right?

 

I don't think we're damaging our body more with each new dose in these kinds of unstable situations. Maybe we are, but the body has no way to oppose the extra Glutamergic activity, because its own mechanisms are not working. So, at this point, the benzos become a parachute, whether we like it or not.

 

A single dose of benzos given to someone with a seizure activity can actually be neuroprotective. It's just that it becomes neurotoxic when taken for a while. But even then, it still works as a neurotoxins and neuroprotectant at the same time, protecting the body from the toxicity it caused, while it keeps causing further toxicity. But the toxicity it causes is our own bodies adopting to the presence of it, as well as the toxicity benzos cause.

 

So, yes, we're talking about the emergency drug that can be a lifesaver, but also a life wrecker when taken for a while. Both problems while taking it and problems withdrawing from it. What a pickle.

[[Su...]]

Well said LorazepamFree!  a pickle indeed... sweet and sour.

SS

[[tr...]]

When I did a (completely insane) CT I've done several escalations. (but at that point I didn`t know that it was withdrawal, which meant I started again with the tablets). When I knew that I struggled with very slow escalation, but never experienced any stabilization. Because I hated the tablets it was just to cure, and I bleed hard for every step down.

 

What made me so sure was that I knew that the actual healing did not start until I completely left the tablets. Then begins the very slow build up of the nervous system again. So the sad question is whether you can get the stabilization you want?

 

Translating may mean I sometimes don`t understand. Have I understood correctly: are you still on K? How long have you been on the last reduction?

 

Sincerely!

[Guest [Fu...]]

Yes I am still on 2.5 mg's of K and in horrible tolerance withdrawal. But as bad as it is any time I try to taper I feel every tiny cut. I'm trying to remain positive but this feels impossible and I'm so terrified. I don't think I can do this.

[[Gr...]]

Hey Fuzzy, just wanted to pop in here and say how unfair it is that you are going through this.  Sending you hugs. 

[[An...]]

Hi Fuzzy,

 

I feel for you. It's been almost a year since I went through over a month of cold turkey off 2 mg of K usage of almost 2 decades. I then tried to reinstate at my normal dosage of 2 mg a day and stabilize planning a taper from there. I was never able to stabilize once I went through that initial CT though. So, I cut pretty fast to 1 mg and started my taper from there. I'm now almost 2 months off completely and although my suffering has been pretty tough, albeit, the toughest thing I've ever been through in my life, to date, I am beginning to see some light at the end of the tunnel.

 

I always was seeking some kind of stability though. But it just wasn't to be and I didn't see any other alternative. I resigned myself mentally to there was no way out but through.

 

I wish you all the best...

[Guest [Fu...]]

Thank you for sharing and I'm sorry you went through that. I'm just so scared. I haven't left my bed in four days. I'm terrified to go downstairs in my own house. I feel like I'm going insane. I don't know how anyone can taper this way. I don't know how anyone can get through the days this way.