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Feeling stuck! Ugh Valium taper


[ca...]

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Hi everyone. I haven’t been on for awhile as I had to hold for awhile and did amazingly well. 
Im talking NO symptoms. 
I was holding on 38 mg Val. 
it was 14 am, 10, 14 pm. 

Hold was due to suffering from high thyroid numbers. ( way out of range) and pre menopausal symptoms. 

prescriber was very supportive and allowed me to observe and listen to my body. She has been wonderful. I do think she may not think “symptoms”  should be happening with such a slow taper. I have been told most so much higher reductions with success.  And I felt like I’m the exception. Which didn’t feel good or reassuring. 
 

Bc I want to get off this medication, I kept tapering under the advise of my prescriber.

I went down to 37 mg val/day with no issue on 8/24. 

2 weeks later, Went down to 36mg as planned -  and it has not gone well. Within 3/4 days, anxiety returned with a vengeance and felt uncomfortable and some worse insomnia. This has been happening since. I understand many have or much worse but this is very uncomfortable and making me isolated. 

 

I don’t know if it’s best to hold until I feel better or just moving down. 

My endocrinologist wants me to up my meds of tirosint (thyroid) but she doesn’t recommend doing both the taper and raising these thyroid meds as they increase anxiety and heart rate by nature. 

 

Hx: was on 1.5 mg klon for 14 years. 0.5 for 11 years, up to 1 mg in 2016 and then 1.5 in 2020. Then self sought out to get off these meds in Jan of 2023. 

Did slow crossover to Val from klonapin over 3/4 months. 

I’m aware my prescribed up dosed for crossover. I find these groups scary but know you guys have experience and hopefully can advise based on experience. I understand everyone is different.

Thank you, 

Cali 
 

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Hi, @[ca...].  It sounds you have a good grasp on your situation, and you also have an empathetic and supportive prescriber.  I'm sorry you are having a rough time with anxiety and insomnia.  I can relate as these are two of the most common symptoms, and I experience both - neither of which were pre-existing conditions for me.  

It does sound as if a hold of your diazepam taper would be a good idea based on your endocrinologist's recommendation (while increasing your thyroid meds).

Once the adjustments have been made to your thyroid meds, and you feel a degree of stability, I don't see reducing your diazepam any slower than 1mg every 2 weeks as productive at this stage.  Slowing down your reductions down the road would be sensible; however, a 1mg reduction from 36mg diazepam is only a 2.8% reduction in dose, and you are still at a fairly high dose.  You handled the previous 1mg reduction well, so your symptoms may also be be associated with thyroid and pre menopausal issues?  

Also, please remember that this process will produce uncomfortable symptoms for most.  Figuring out ways to keep these symptoms manageable and listening to our bodies is most important.  Developing coping mechanisms during this process is helpful.  Distraction, meditation, exercise (as you are able), reading etc.. can all be helpful examples.  Fear in itself is one of the worst symptoms.  You will be ok.  Wish you the best! 

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Thank you so much for your thoughtful reply. I genuinely appreciate it. That was very reassuring to hear.  I'm not sure if this makes a difference, but I have to creep up to the dose Endo wants me on. Meaning, that it will take about a month to get to the dose they need me on for 6 weeks to test my thyroid again, so is that too long of a hold? But, I do agree, that it definitely could be contributing to anxiety and symptoms. Thanks again. :)

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Others may be able to chime in with experience, or differing opinions; however, I think it will be just fine (perhaps even advisable) to hold your diazepam dose at 36mg while you, and your endocrinologist, adjust your thyroid medication.

In general, it is not advisable to make simultaneous adjustments to separate medications at the same time - one is unable to distinguish what is causing what. 

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I agree with @[Fa...] to hold your dose while sorting out your thyroid meds. There's no rule/guidelines on how long to hold. Only what works for you, and if your doctor says it’s in your best interest to hold, then I think it definitely is. I've held my dose for 6 weeks when symptoms got tough and I was prepared to hold for much longer if I needed to. I think get your thyroid meds sorted out first.

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  • 2 weeks later...

Hello! The decision was made to hold on 36 until thyroid meds are sorted out. This will keep me at 36 until Nov/Dec due to slowly increasing thyroid med. 

That's fine and maybe today is just a BAD day, but I'm feeling very frustrated with how difficult this all is. Only reducing 1mg every 2 weeks from 40 mg Val has been very taxing on me after a 3-month crossover from Klon. Each reduction caused chemical anxiety and some depression. ( never had either before taper.) I just wanna lay down all die but can't. No one would understand, so I don't really talk to friends about it.

And I'm fully aware the road will be long if I go at 2 mg/month. I AM functioning, and I feel badly complaining to those who are suffering more. I have to function and work full time and take care of the kids. Alone. so no choice but to function. one income household.

And then I read that people often end up MORE hurt after they are off of valium months and years later, and many are disabled. What do people do? Just keep tapering and finally, get off and hope for the best? Where I was on for 14 years, I feel like I'm in that category of folks who get BIND or Akathesia.. it frightens me so badly:(  Even Dr. whitt-Doeering has videos on this high prevalence rate.

 

I don't know what my options are. Go back to klon? I know Valium is not nearly as strong so maybe a low dose of that instead of this huge amount of Valium? or stay the torturous course for a possible 2-year taper that isn't going well now, never mind when I get down low.

 

sorry for being a Debbie downer-just feeling stuck. 

 

Thanks, 

Cali

 

 

 

 

 

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I'm not sure if I understand you correctly, so apologies if my reply does not address your concerns. I haven't watched these videos but I don't think one benzo has a higher propensity for recovering than another. If that was true, everyone would be on the 'one benzo recovery bandwagon'. When I got here some people were telling me I was on the most potent benzo ever and how difficult it would be taper. I just wanted to smack them and ask them how do they think that is helpful?  I think we have to shut out the noise and stay the course. 

I know what you mean by how long the road can seem. At one point I was considering just jumping because I couldn't stand the thought of another year of tapering plus recovery. But then at some stage, the numbers just dropped and then I was off. I never thought I was going to be the person who was off the drug. Don't look at the staircase, just look at the step right in front of you. :hug:

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Hi, Jelly Belly-Thank you very much for your reply.

 And I'm sorry if I didn't articulate well :)  For the videos, I was more trying to say that many people, not rare, end up suffering for years after getting off these meds anyway. ( any of them)I think what I was trying to say is valium is 20 times less potent than Klonopin, so maybe my body doesn't like valium. But I don't know if it's advisable to switch back at this point. my body feels a little haywire as it is. 

 

May I ask if, during your taper and recovery,if you were functioning okay? meaning working, taking care of daily stuff? 

 

I should note that I was doing pretty well with the 36 mg until I updosed the thyroid med- so they likely could at least have something to do with this symptom increase now.I feel awful!  Started the higher dose thyroid meds on 9/21. 3 x /week is planned for 2 weeks, the increase to 5x/wk for 2 weeks,  then daily. Although I do get concerned about staying on a Valium dose for too long as I don't want to become tolerant of it.

 

Your comment about people commenting on things made me chuckle! I feel the same way. I come here for support and to give it when I can, but often leave feeling worse. (fear) 

 

I guess one burning question I have is; Is it odd that going down 1 mg every 2 weeks starting at 40 mg valium causes symptoms? My prescriber said that is not typical, which made me feel pretty crappy about my prognosis. It makes me feel like an anomaly. I would love to try 2 mg cuts but logically, if 1 mg causing symptoms, wouldn't 2 mg be worse? I'm only asking bc I'm learning not much of this seems logical to me. and much of it cant be planned. What resources do you find helpful to learn more about this? I started with Ashton as a guide,but then started occasionally ( I'm careful not to obsess about any of this)

 

thanks again,

 

Cali

 

I would love to have a personal coach but it is so darn expensive! Have you heard of any? I know Dr. Witt-Doering;'s office has a few ( Nicole Lambert, etc) 

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Quote

I think what I was trying to say is valium is 20 times less potent than Klonopin, so maybe my body doesn't like valium. But I don't know if it's advisable to switch back at this point. my body feels a little haywire as it is.

I think if you were okay after your crossover, then the problem is likely somewhere else. I don't think swapping back and forth between benzo's is a good idea. I would give the Valium taper more chance after your thyroid meds before entertaining this idea. That's just where my thinking lies.

15 hours ago, [[c...] said:

May I ask if, during your taper and recovery,if you were functioning okay? meaning working, taking care of daily stuff? 

Yes, my taper was functional and I am functional during recovery. I worked during the most part of my taper but I had to quite my job when I got Long Covid. So that had nothing to do with withdrawal. During withdrawal I never missed a single day of work. I got very sick from Long Covid and wasn't very functional due to that. But I'm mostly recovered now. 

15 hours ago, [[c...] said:

I should note that I was doing pretty well with the 36 mg until I updosed the thyroid med- so they likely could at least have something to do with this symptom increase now.

I do think probably has something to do with your symptoms. This is why we always recommend only one change at a time, which you followed. Your doctor also suggested not to taper during this time, so I think it could contribute to symptoms.

 

15 hours ago, [[c...] said:

Although I do get concerned about staying on a Valium dose for too long as I don't want to become tolerant of it.

I personally would not be concerned about it right now - you are not stable, your doctor does not want you to taper, so I think you need to be kind to yourself and let your body recover from the thyroid meds. I suspect I was showing signs of tolerance at the start of my taper and holding did not increase these symptoms. 

15 hours ago, [[c...] said:

I guess one burning question I have is; Is it odd that going down 1 mg every 2 weeks starting at 40 mg valium causes symptoms? My prescriber said that is not typical, which made me feel pretty crappy about my prognosis. It makes me feel like an anomaly. I would love to try 2 mg cuts but logically, if 1 mg causing symptoms, wouldn't 2 mg be worse? I'm only asking bc I'm learning not much of this seems logical to me. and much of it cant be planned.

To me, nothing in withdrawal is typical. Some people can cut more at the start, others can't. I don't think it's worth it to rush your taper when your body is struggling. Who knows, maybe later down the track you can speed it up. But even if you can't, it's more important to keep your symptoms manageable. 

15 hours ago, [[c...] said:

What resources do you find helpful to learn more about this? I started with Ashton as a guide,but then started occasionally ( I'm careful not to obsess about any of this)

I read the tapering forum. I didn't find it as intense as the other forums because most of it is focussed on strategies and listing symptoms (rather than discussing details of symptoms). I read threads related to my benzo and how people tapered it. It might not be your cup of tea though, but everything I know I learned here. 

15 hours ago, [[c...] said:

I would love to have a personal coach but it is so darn expensive! Have you heard of any? I know Dr. Witt-Doering;'s office has a few ( Nicole Lambert, etc) 

I don't know if I necessarily believe in benzo coaching. All they do is what we do here on the forum and you can get that for free here. I saw a psychologist which helped me to just get my emotions out. It helped me to dump everything on her rather than my husband. I specifically sought out a psychologist that dealt with addiction. My doctor wrote a referral to explain I don't have addiction, but I wanted somebody who understood the pain and struggle of dealing with withdrawal symptoms. This helped me tremendously. She understood the difference between addiction/dependence and never treated me for addiction, but was able to relate to my withdrawal experience.

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  • 2 months later...

Good Morning all!

I hope today finds you feeling well. I've been MIA here for a bit bc I'm still on 36 mg Valium and holding. Thyroid med increase was awful and created excessive anxiety so I had to go back down on thyroid meds to try and see if that was causing the symptoms. The half-life of thyroid meds is 2 weeks, so it takes a while to get rid of symptoms. I'm about one week or so into it. I still feel like crap. Anxiety by FAR is the worst symptom. Some internal tremors and insomnia.

 

I also met with a functional med doctor who said I was estrogen-dominant and low on progesterone, which in itself can cause major anxiety. perimenopause

 

So.. She is giving me supplements to work on that (nothing that affects GABA). 

 

I guess I'm at a loss... I feel stuck at 36 mg V and why am I so anxious? I never was before. Also some minor depressive symptoms -prob because this is all so discouraging. I'm a super positive person, but it's almost been a year and I feel worse than when I started. The thought of tapering for 2 plus years isn't something I can do.

 

Is it possible my body does not like Valium or doesn't metabolize it like it did the K (I was on 1.5 K for several years and slowly crossed over to Valium) If so, what now? 

 

Thanks, everyone!

 

Cali

 

 

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Hi Cali

I'm really sorry you're going through so much. I know how it feels. When I got Long Covid two years ago, it set me back so much. 

In my opinion I think your symptoms are exacerbated by the thyroid issues and meds. But just keep in mind going through bouts of depression during this ordeal is totally normal. I had it too. I know it seems like a very long road ahead but you can do it. There was a point when I thought I was never getting off and then one day it was the end of the journey. Mine took much longer due to Long Covid.  But we all get there in the end. 

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5 hours ago, [[c...] said:

Good Morning all!

I hope today finds you feeling well. I've been MIA here for a bit bc I'm still on 36 mg Valium and holding. Thyroid med increase was awful and created excessive anxiety so I had to go back down on thyroid meds to try and see if that was causing the symptoms. The half-life of thyroid meds is 2 weeks, so it takes a while to get rid of symptoms. I'm about one week or so into it. I still feel like crap. Anxiety by FAR is the worst symptom. Some internal tremors and insomnia.

I also met with a functional med doctor who said I was estrogen-dominant and low on progesterone, which in itself can cause major anxiety. perimenopause

So.. She is giving me supplements to work on that (nothing that affects GABA). 

I guess I'm at a loss... I feel stuck at 36 mg V and why am I so anxious? I never was before. Also some minor depressive symptoms -prob because this is all so discouraging. I'm a super positive person, but it's almost been a year and I feel worse than when I started. The thought of tapering for 2 plus years isn't something I can do.

Is it possible my body does not like Valium or doesn't metabolize it like it did the K (I was on 1.5 K for several years and slowly crossed over to Valium) If so, what now? 

Thanks, everyone!

Cali

Cali before I discovered BB and even that benzo 'withdrawal' existed (last year this was) I was going mad trying to work out what was wrong with me. I must have been yo-yo-ing because I was taking V  only for panic attacks. However thes attacks became more frequent. I did not associate the following health issues with taking benzos. Now I see connections.

POTS, Dysautononomia, eye flashes and needing reading as well as glasses for farsightedness- some examples.

I also was given thyroid med (very low dose) for subclinically low thyroid. Was surprised at the unpleasant reaction to it. Even the doc was because he told me it was the lowest dose he could possibly give. So I went off. Then I had other hormone issues. Went to Gyn, and had to go off that tablet and take a cream form very low dose. My system has become highly sensitive to just about anything I take.

Caffeine, alcohol (either of these even in tiny amounts excacerbates symptoms) any and all health supplements  (apart from a basic multivitamin) all had to go.

So apparently my system reacts to so much that I can no longer take what would otherwise be supplementive to overall health. Im hoping once tapering is over I can consider supplements again.

I dont like any of this at all. Either, As far as w/d.. the 1-2 years before all of this is over seems daunting. idk about everyone here, but I am going to plough through, albeit very carefully (by that I mean careful tapering) since all the symptoms since this started are unbearable, I figure the best I can do it stay optimistic. 

 

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Just now, [[K...] said:

Cali before I discovered BB and even that benzo 'withdrawal' existed (last year this was) I was going mad trying to work out what was wrong with me. I must have been yo-yo-ing because I was taking V  only for panic attacks. However thes attacks became more frequent. I did not associate the following health issues with taking benzos. Now I see connections.

POTS, Dysautononomia, eye flashes and needing reading as well as glasses for farsightedness- some examples.

I also was given thyroid med (very low dose) for subclinically low thyroid. Was surprised at the unpleasant reaction to it. Even the doc was because he told me it was the lowest dose he could possibly give. So I went off. Then I had other hormone issues. Went to Gyn, and had to go off that tablet and take a cream form very low dose. My system has become highly sensitive to just about anything I take.

Caffeine, alcohol (either of these even in tiny amounts excacerbates symptoms) any and all health supplements  (apart from a basic multivitamin) all had to go.

So apparently my system reacts to so much that I can no longer take what would otherwise be supplementive to overall health. Im hoping once tapering is over I can consider supplements again.

I dont like any of this at all. Either, As far as w/d.. the 1-2 years before all of this is over seems daunting. idk about everyone here, but I am going to plough through, albeit very carefully (by that I mean careful tapering) since all the symptoms since this started are unbearable, I figure the best I can do it stay optimistic. 

*when I wrote last year, that was when I tried a thryroid med, did not work well. Gave it up. kind of self tapered off benzo w/o understanding it well. IT was this year (which soon comes to an end) since stumbling across 'benzo withdrawal' it has become clear whats been going on- healthwise

(despite the accompanying brain fog) 🧠🌫️😅

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1 hour ago, [[K...] said:

*when I wrote last year, that was when I tried a thryroid med, did not work well. Gave it up. kind of self tapered off benzo w/o understanding it well. IT was this year (which soon comes to an end) since stumbling across 'benzo withdrawal' it has become clear whats been going on- healthwise

(despite the accompanying brain fog) 🧠🌫️😅

Hi there, Thank you so much for responding. I'm so sorry you went through all of that. How are doing now? It's so hard to know what to prioritize- taper, thyroid, or hormone imbalance. They all affect one another. What's happening with your thyroid now? If you don'y mind, may I ask what you tapered off and how that went?

Sounds like we have some health things in common. Would it be ok if I messaged you to talk? 

 

Thanks so much :)

Cali

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1 hour ago, [[j...] said:

Hi Cali

I'm really sorry you're going through so much. I know how it feels. When I got Long Covid two years ago, it set me back so much. 

In my opinion I think your symptoms are exacerbated by the thyroid issues and meds. But just keep in mind going through bouts of depression during this ordeal is totally normal. I had it too. I know it seems like a very long road ahead but you can do it. There was a point when I thought I was never getting off and then one day it was the end of the journey. Mine took much longer due to Long Covid.  But we all get there in the end. 

Thank you Jelly Baby, 

 

I'm so sorry about Long Covid. How are you feeling now?

I appreciate your input very much. My brain fog is bad today, so just so I understand, your opinion is: my thyroid med increases cranked-up anxiety. If so, that's what I think too. I went back down to the dose where I felt fine on my thyroid meds about a week or so ago. I'm hopeful the next week or so will bring some relief. It takes about 4 weeks to be gone from the system.  I, too, believe optimism and plowing through is the way. I have faith I'll get there, it is just hard to know where to start as it seems my body only can do one thing at a time. I could only do taper, or could hold and see how supplements work for the high estrogen/low progesterone work?

 

Thanks for taking the time to read and respond,

Cali :)

 

 

 

 

 

 

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