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Hello everyone.  We have not posted since May of this year, but it's time for an update.  Ingrid had tapered down to 0.75 mg Diazepam.  She really wanted to get off a couple of other meds, so she stopped tapering the Diazepam and held at 0.75mg while she slowly got off Zoloft and Lopressor.  It took a while, but she was feeling pretty good.  Symptoms were mild and her appetite returned.  She began tapering the Diazepam again and the last taper was to 0.62 mg.  The waves began after a week and have not let up for over four weeks.  While they are not as severe as they once were over a year ago, they are enough to be disabling. (6 or 7 on a scale of 1 to 10)  Some times they are only 3 or 4, but usually higher.  The waves never used to last this long.  We don't understand what is going on.  She is afraid to taper any more until this subsides.  Is it unusual for the waves to last longer as the dose gets lower?

Thank you for your thoughts.

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Hello again, Helping Husband.  It’s good to hear from you.  Some individuals find they need to make very small reductions when they get to very low doses.  The reduction from 0.75mg to 0.62mg may seem like a small amount but it represents a 17.33% reduction in dose.  Your wife’s response suggests it may take a while for her symptoms to stabilize.
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Hi Libertas,

I should have been more specific about her tapering.  When she was at 0.73 mg, she tapered off Zoloft.  She didn't taper the Diazepam for over three months and was feeling relatively better.  She then stepped down to 0.69 mg and got off LoPressor over a couple of weeks.  Then she stepped down to 0.65 mg in September, always taking the Diazepam in a split dose, AM and PM. 

Then, in October she went to just one dose in the evening.  Two weeks later she went to 0.62 mg on November 6th.  After about 11 days the waves became intense and haven't let up since.  She needs some relief from the constant pain, anxiety, and digestive issues.  Still at 0.62 mg.

In March of 2023 it will be three years of tapering.  She is very anxious to get off the Diazepam but will not rush it.  Is it common for symptoms to get worse as the dose is lower?  The waves never lasted this long before.

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Also, we are wondering about the use of some supplements during withdrawal, namely L-Theanine, Taurine, Phosphatidylserine, Glycine, Magnesium L-Threonate, and Evening Primrose Oil.  Any benefits or side effects from any of these?

Thank you.

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I did read the string on Supplements during withdrawal and frankly I got more confused than before.  We have been looking at Dr, Nicole Cain's website.  Any opinions on her?
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Also, we are wondering about the use of some supplements during withdrawal, namely L-Theanine, Taurine, Phosphatidylserine, Glycine, Magnesium L-Threonate, and Evening Primrose Oil.  Any benefits or side effects from any of these?

Thank you.

 

Supplements can be tricky, some members say they help, others say they hurt so if you're going to try, please only add one at a time and in small amounts, we've had members experience severe setbacks from them.  There are so many websites claiming cures so members will buy the packages they offer only to end up throwing them away.  If you're thinking of buying these as a part of a package, it would behoove you to find out exactly what's in it and purchase them one at a time from your local health store.  Sure, it could be cheaper to buy the package rather than individually but if end up throwing them away, you didn't save any money.

 

Personally, I'm skeptical of supplements, I've read more posts about harm than I have praising them.  You can use these Search Instructions in your browser or try searching the Alternative Therapies & Supplements board to see what members have to say about what you've listed.

 

Edit: Search instructions

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Hi Helping Husband

 

I can maybe weigh in with some of my recent experience and speculation.

 

Is it common for symptoms to get worse as the dose is lower?  The waves never lasted this long before.

 

We do find that some people experience an increase in symptoms and intensity as they get lower in dose. Something else that might be possible is she could be at a point where she is getting lesser therapeutic value from the drug. As you noted, Ashton said the jump dose for Valium is 0.5mg (not suggesting she has to jump here, just providing context), so she is getting quite low. When I was at 0.75mg Valium equivalent for my benzo, I was wondering whether the therapeutic effect was wearing off. My pre-existing benzo condition was ramping up but was still manageable up until this point. But since that point it feels like the benzo was doing nothing for my pre-existing condition and it is back with a vengeance. Holding her dose for a while longer will probably be a good idea to see if it levels out. 

 

I know she wants relief and you're hoping for better news, but hopefully if you have a possible understanding of what might be happening, it can help to weather the storm.

 

I also agree with Pamster on the supplements, I personally don't think they're very helpful.

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Hello again, Helping Husband.  My apologies for the delayed response.  Real world issues required my attention the past several days.

 

Happily, you’ve received excellent feedback from both Pamster and jelly baby.  I agree with them, especially their take on the use of supplements.  Per the web page linked below:

 

“… there is no evidence that supplements and herbs solve … withdrawal … issues. There is evidence and anecdotes that certain medications and supplements that are GABAergic have been associated with harm in those experiencing benzodiazepine issues.”

 

Instead of looking for supplements to address your wife’s symptoms, I suggest you encourage her to use whatever coping techniques she has found to be effective and/or develop new ones.  In one of my earlier posts to you, I shared a link to a web page that provides an overview of techniques to consider, including quick tips for dealing with specific withdrawal-related symptoms. I’ve included the link again below.

 

In closing, your wife’s nervous system may well be in a highly sensitized state.  She has taken and discontinued multiple psychoactive drugs over the past several years (i.e., temazepam, alprazolam, clonazepam, lorazepam, buspirone, buproprion, sertraline).  Consequently, the effects of even small changes may be amplified.

 

I agree with her decision to hold at her current dose in hope that the latest round of symptoms will stabilize (i.e. stop changing in number and nature and become tolerable — not go away entirely).  At that point, she could resume her taper.  Her last three reductions have been 5.48%, 5.8%, and 4.62%.  Given her response to the last reduction, she might consider decreasing her reduction percent even further (e.g. to 3% or even 2.5%).

 

Links:

Medications and Supplements of Concern on Benzodiazepines, During Cessation and After Withdrawal Benzodiazepine Information Coalition

https://www.benzoinfo.com/medications-and-supplements/

 

Coping Techniques A to Z | The Withdrawal Project

https://withdrawal.theinnercompass.org/page/coping-techniques-z

 

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  • 2 weeks later...

Thank you all for your helpful thoughts and suggestions.  She has tried to apply everything you suggested, but the severe waves keep coming.  We were wondering, Jelly Baby, how did you weather the storm at 0.75 mg and beyond.  She has held at 0,62 mg for six weeks now and there is no relief at all.  There is not even a "good" day now and then.  She doesn't know if she resumes her taper, even slightly, if things will get worse.  Her anxiety is through the roof and constant.  When you resumed your taper, did things get even worse for you?  We are really at a  loss as to what to do at this point and extreme pessimism is taking over.

Thank you.

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I'm so sorry to hear it's this bad. For me it was only my pre-existing condition returning at the lower dose. I have struggled with severe muscle spasms in my jaw for many years which led to benzo's. I knew it would likely return when I stopped using it. My usual withdrawal symptoms however remained the same as I tapered down and only slightly increased when I jumped. I just live with the jaw pain as the alternative of being stuck on benzo's and in tolerance for the rest of my life is not an option. I do believe I'm in better shape than your wife because I've been functional throughout my taper.

 

I wish I could offer you more. I know many people who are sensitive needs quite a bit of time to stabilize. And for us in withdrawal it feels counter-productive to just do nothing because we want to feel better and control this process rather than just wait it out. I still think holding would be her best option. When I jumped my symptom intensity increased, so even though I feel I definitely started to lose therapeutic value, I also felt the jump, so the meds was still doing something. Please tell her we're thinking of her and to hang in there  - she's done such an amazing job!

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Just an update:  My wife is in the seventh week since her last taper.  No sign of the waves easing.  Sometimes she will have a "fair" day ( waves of about 3 to 4 on a scale of ten}, but the next day is right back to 6 or 7.  She feels there is no end in sight.  Very discouraged.  She has tried all of the suggestions offered and is trying to remain optimistic, but it very difficult to do so, as nothing brings relief, even temporarily.

We keep looking forward to tomorrow in hopes of a better day.

Thanks for listening.

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Hello, Helping Husband.  My heart goes out to you and your wife during this incredibly challenging time.

 

You’ve probably already done this but just in case not …

 

Have you charted the number of fair days your wife has been having by week as follows:

 

Week 1 - number of fair days

Week 2 - number of fair days

Week 7 - number of fair days

 

My hope is this might reveal a pattern showing the number of fair days per week is trending upward.

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Since she dropped down to 0.62mg 7 weeks ago, her "Fair" days were as follows:

("Fair" being wave intensity of 4 or less on a scale of 1 to 100 - Even 3 or 4 is very uncomfortable, 5 or higher is unbearable)

Week 1 = 7 Fair days

Week 2 = 7 Fair days

Week 3 = 0 Fair days

Week 4 = 4 Fair days

Week 5 = 4 Fair days

Week 6 = 4 Fair days

Week 7 = 3 Fair days

 

Is it common to go this long without getting relief before she tapers again?  I know some have held for longer periods, but that seemed to be done for external reasons.  She doesn't taper until she has several "Good" days consecutively.

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Thank you for sharing these data with us, Helping Husband.  Given diazepam’s long elimination half-life, it makes sense that your wife had 0 ‘fair’ days during Week 3.  The fact that she had a 4 out of 7 fair days during Weeks 4 to 6 suggests she may be beginning to stabilize but isn’t quite there yet.

 

Re: your question ‘Is it common to go this long without getting relief before she tapers again?’ ….

 

I don’t know how common it is, but I can tell you we have had members who held longer than 7 weeks before their withdrawal symptoms became tolerable enough for them to make another reduction. It’s also possible the dose your wife is taking is no longer having any therapeutic effect and she has entered into what some members refer to as the acute phase of recovery. 

 

Does your wife experience any therapeutic effect — or a diminution of withdrawal symptoms — after she takes a dose?

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Not getting the therapeutic amount makes the most sense to me.  She also reminded me that she had to start back on Metoprolol 12.5 mg twice a day because of frequent palpitation episodes  That was on 12/21.  She thinks it might have an effect, but I don't. (So we disagree on that).

The only windows she gets (which are few and far between) usually occur shortly before she takes the Diazepam around 9PM.

Is there a thread that discusses this "Acute phase of recovery"?

Thank you.

She is always encouraged by the posts from you.

 

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Hey HH

 

I’m so sorry your wife is suffering, I’m kind of the same right now.

 

I have POTS and a lot of friends on Metoprolol. Don’t discount side effects from that drug.

 

A lot of people feel crappy on it, but crappy off it too.

 

As I weave my way through this withdrawal nastiness, I have found that even the excipients in the drugs are bothering me.

 

But at this point, she’s also pretty low in dose, that she’s probably finding no effect from it!

 

I’m like that.

 

Tough spot. Can’t jump or go faster, but holding is doing nothing either.

 

I guess the only way out is through.

 

Good luck, she’s lucky to have you.

 

Winnie

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Greetings, Helping Husband.  Thank you for letting me know your wife finds my posts encouraging.  It’s heartening to learn I have been able to help in some small way.

 

I see jelly baby has given you the link to the ‘Four Phases of Withdrawal’ post written by one of our members back in 2016.  As far as I know, there is no scientific evidence to support the ‘theory’ set forth in the post, so bear that in mind when you read it.  My personal observation is that the recovery process varies greatly by individual and is both unpredictable and non-linear.

 

Re: starting back on Metoprolol …

 

My understanding is that metoprolol may decrease the excretion rate of diazepam thereby increasing its serum level.  This in turn has the potential to alter the effects of the diazepam.  For example, slowed reaction times and/or decreased kinetic visual acuity have been reported.  Did your wife notice anything different in terms of the effects of her nightly dose of diazepam or her withdrawal symptoms after she re-started the metoprolol on Dec. 21?  (You probably already know this, but just in case not … metoprolol has a black box warning indicating it should not be discontinued abruptly but instead should be tapered.)

 

Re: the windows your wife is experiencing right before she takes her evening dose …

 

It is not uncommon for members to report that their withdrawal symptoms ease in the evening.  It’s speculated this may be due in part to the fact that cortisol levels are typically lower at this time.

 

How does your wife feel after she takes her 9pm dose?  Does she notice any effects?  If not, then WinnieDog’s take may apply — the only way out is through.  Does your wife feel strong enough to begin tapering again?  Perhaps at an increased rate if it does not cause an uptick in withdrawal symptoms? Or is she inclined to just ‘rip the bandaid off’ and quit?

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Thank you all for your encouraging words.

Today is a bad day and she can't even think about tapering or jumping.  She is too weak physically and emotionally.  She just wants it to end, but also knows she has to bull her way through it.

I wish I could raise her spirits somehow, but I can't.  Let's hope tomorrow is better.

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I am so sorry. I wish we could make it better. Just know she's going to be okay.  At some stage this will pass. I know it's just words but she's going to pull through.
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Good Day, Buddies. 

M y wife has ben at 0.62 mg of Diazepam going on eight weeks now. There has been no real relief over that time.  We are thinking of making a small taper (perhaps to 0.60 or 0.59) to see how it effects her.  We realize that some of her discomfort may come from restarting Metoprolol, but that has only been for the last 11 days, which doesn't account for the prior 6 1/2 weeks of agony.

Any thoughts on making a small taper at this time?

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I’m sorry that your wife is still suffering, Helping Husband.

 

Does your wife experience any relief at all after she takes her nightly dose of diazepam?  Per Ashton:

 

In any case the 1mg or 0.5mg diazepam per day which you are taking at the end of your schedule is having little effect apart from keeping the dependence going.

 

The only way to know if making a small reduction will help is to try.  Does your wife feel strong enough to do this?

 

My personal opinion is the recent reinstatement of metroprolol may be a red-herring.  Your wife has a long history of starting and stopping multiple neurologically active drugs.  Consequently, it’s likely that her nervous system is highly sensitized. Returning it to homeostasis will require time and care.

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Libertas,

She thinks there may be a bit of relief after her nighttime dose of Diazepam, but not to any great extent.  The way she feels, it is really hard to tell.  She usually will get a few hours sleep until things begin again around 3 or 4 AM.

Right now, she is no strong enough to cut down on her dose.  Perhaps if she gets a couple of fair days in a row, she will try it.

She is also not sure if she will adjust to the Metoprolol or not.  Right now she is getting severe stomach pain and cramps and a lot of abdominal gas, along with mental fog.  She thinks this is from the Metoprolol.  It's really difficult to determine what is causing what. We may ask the doctor if there is something else for her palpitations, heart racing, and blood pressure.  It seems that everything is just a big mess.

When her waves are continuously bad over a few days it is hard to analyze things.  Sorry we're not more specific in our answers.

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I agree with Libertas!

 

At first I thought it was the Metropolol, but since reading more of her history, I think it’s the starting and stopping of the other drugs that has impacted her CNS.

 

I’m in a similar position, except I got off my Ativan and thrown into a deep withdrawal, and still trying to taper Valium (got stuck on both), while also having COVID again. Too much for my system. I also get no relief from any of the doses.

 

I’m also in the throes of bad stomach issues, not fun.

 

In the end, all of it is impacting her poor system.

 

She’s so close to the end, just a tiny bit more, but she seems to need a break at the moment.

 

I’ll be thinking of you.

 

Winnie

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