Symptoms worsening after switching to Valium

Hi all,

 

I’ve been on valium for the last 7 weeks after going cold turkey from clonazepam (2 x 0.5mg per day) and things are getting worse. When I visited the doctor during cold turkey, she said we’ll put you directly onto Valium and taper you from that. I feel there have been two major mistakes in doing this - 1) I was switched directly without some sort of slow crossover, and 2) I was put on 10mg valium… only half the equivalent of the clonazepam I was on prior to cold turkey. At first, the Valium helped in that the sedative aspect of it helped me sleep, initially, but after that, everything got much worse, symptom wise. My anxiety has gone through the roof since switching to Valium, whether I’ve recently dosed or not. After 4 weeks, I cut 1mg and am taking 5mg in the morning and 4mg at night, and although the anxiety is more tolerable after dosing, it doesn’t seem to be any less intense, and I notice I’m struggling further and further out from my next dose with the more time that goes by. I mention the anxiety, but there are also many more symptoms including - head and jaw in a constant state of tension and ache. Aches and pains all throughout my body, especially the legs. There’s also the constant inner shaking, or vibration in my body… and I can feel how vulnerable and extremely sensitive my CNS is. The fearful thoughts are there all the time and only grow stronger as inter dose withdrawals seem to increase. I don’t understand this, considering Valium is long half life. To be honest, it doesn’t seem that Valium has had any impact on stabilising me from the cold turkey 7 weeks ago. It seems to have only increased the intensity of the symptoms to this point and it’s as if whatever potency it did have in the beginning, it is now quickly losing. But as I mentioned, even when the sedative aspect was helping, I could still feel all the other symptoms present at the same time, none of them abating to find some sort of stabilisation.

 

I’m wondering if I’m one of those people who don’t do well on Valium…, which I read has something to do with metabolism, although I can’t say I understand the ins and outs of this.

 

I’ve only given a few examples of symptoms here, but it is a truly considerable list of the usual suspects, and really does border on what you would expect during the acute withdrawal phase, as I still feel as though I’m still in a relative degree of cold turkey

 

I can see how difficult things are now becoming, even just attending to simple chores like preparing and eating a meal (extreme lethargy, nausea and loss of appetite). Soon I will stop eating if it gets any worse. It’s an almighty battle as it is.

 

I’m in a position where I feel I don’t know what to do. I guess I have three choices 1) Try and have the doctor switch me back to clonazepam to hopefully find some stabilisation before tapering again, either from the clonazepam directly or, properly crossing slowly back to Valium to taper. Of course, this would slow the whole process down considerably and all I want to do is get off these meds. Also, I’ve been off it for 9 weeks, and it does concern me, going back to such a potent drug as clonazepam, given what I’ve now read about the increased difficulty in tapering from it as apposed to Valium 2) Bite the bullet and cold turkey from here, which would mean moving to a more supportive environment. And to be honest, this option scares the hell out of me. 3) continue to taper from where I am, potentially at an increased rate and just hope I can manage the cuts and pace of the taper.

 

Just for clarity, I mentioned earlier that I had my first cut of 1mg (down to 9mg) just over 4 weeks after switching to Valium , which means it’s been 2 and a half weeks since the cut. I can’t help but wonder if I could now be feeling the worst of that cut after this 2 and a half weeks? I know it’s a very unpredictable process, but I would have thought that things should be starting to ease by now, not getting worse. I also wonder if having not been able to stabilise my symptoms over that 4 weeks on Valium before making that first cut has potentially caused further destabilisation. But where do I go from here? It reminds me of a game show “pick a box” and which ever way I choose, I’m likely to pick the booby prize…

 

All I know is, I’m battling with everything I’ve got just to care for myself at moment… hanging by a tether.

 

Still, I must maintain that it’s either the Valium that either hasn’t agreed with me from the beginning, or the way I was switched directly to the Valium at a lower dose (half) than what would be equivalent to the clonazepam. And why the inter-dose withdrawals?

 

I also think about whether I should hold another week or so to see what happens, but I just can’t keep heading on this trajectory downward with the symptoms continually intensifying.

 

 

Does anyone out there have any thoughts or advice.

 

I just feel completely lost as to what I should do from here on…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I see from a previous post you were 19 days into your cold turkey when you were given the Valium?  A slow crossover at that point wouldn't have been possible unless you went back on the 1 mg Klonopin, got stable on that then began a slow crossover to Valium.  I do believe you were undermedicated at 10 mgs Valium though. 

 

I don't feel going back to Klonopin would be productive at this point, I'd suggest definitely holding your taper and perhaps going up in dose on the Valium if you can convince your doctor, you're in no shape to taper anymore at the moment.

 

As for dosing, Professor Ashton had her patients dosing Valium 3 times a day so it might be a good idea to try that too.  If you do decide to create 3 doses out of 2, you'll definitely need to hold off tapering any further because your body will see the changes you make as a reduction so you'll need to stabilize after doing this.

I totally agree with Pamster. Hold till you become somewhat stable and follow the Ashton manual from there on.

Thank you, Pamster!

 

That’s Invaluable information. Just what I needed to hear!

 

Yes… I figured I missed the boat on reinstating the clonazepam when I first visited the Doctor about tapering. I didn’t have enough knowledge to push for that reinstatement at that time. I agree, it probably wouldn’t be productive to backtrack at this stage. It’s very helpful to have you echo those feelings back to me. It can become so difficult to trust one’s feelings going through this process.

 

In regard to dosing Valium 3 x per day, I’d never read that in the Ashton manual. I only remember reading her saying it was unnecessary to dose anymore than twice a day, so that’s music to my ears - 3 x per day. There were a couple of days recently when I woke up and only took 2.5 mg and then took 2.5 later in the day, and that seemed to alleviate some of the discomfort. I don’t know what my doctor will say… she was pretty adamant that she didn’t want me to updose on the taper at any stage, but I’ll see what she says. At the moment, would I have to split the total daily dose into 3 equal doses - 3mg each? Or just do as I had done on those couple of previous occasions and split the daily 5mg dose in half and space the doses apart? - that’s if I can’t get the doc to lift my dose. And in regard to that… if I do hold for a while on my current dosage 3 x 3mg, do you think I will still eventually stabilise without the increase?

 

Bless you

 

J

 

 

 

Hi Candysmandy,

 

I think you’re both right… Will hold longer.

 

It’s hard to know what’s right sometimes. I’d read that you shouldn’t hold more than a few weeks between cuts, but then I also read so many people saying you have to do so at certain times in the taper. It’s confusing. But what else can one do… if one hasn’t stabilised yet.

 

Thanks for the support!

Can you help us summarize your benzodiazepine use history so we can add it to your signature?  Members will be able to see your history at a glance and will be more likely to respond to your posts.

 

Questions:

 

- How long had you been taking clonazepam before you stopped cold turkey?

- Was this the first time you’ve used and discontinued a benzodiazepine?

- On what date did you cold turkey the clonazepam?

- On what date did you start taking the 10mg of diazepam?

- On what date did you reduce your diazepam dose from 10mg to 9mg?

- Were you experiencing interdose withdrawal (IW) when you were taking 10mg of diazepam?  Or did the IW begin after you reduced to 9mg?

- Are you taking (or have you recently discontinued) any other medications or supplements that might be causing issues? 

 

Is increasing your dose of diazepam an option?  You are correct that 1mg of clonazepam is equivalent to 20mg of diazepam according to Ashton’s equivalence table.  However, Ashton’s equivalents were intended to be used for benzodiazepine substitution; they are not necessarily therapeutic equivalents. 

 

For example, according to ClinCalc (see link below), the therapeutic equivalent of 1mg of clonazepam to diazepam ranges from 2.5mg to 20mg, with an average of 15mg.

 

Link:

Benzodiazepine Equivalents Conversion Calculator (ClinCalc)

https://clincalc.com/Benzodiazepine/

I'm glad to know you were thinking along these same lines and I agree, sometimes we need to ask for feedback to validate our own thinking, I can relate to not trusting ones own thoughts during this process.

 

As for dosing per Ashton, I was going by her slow withdrawal schedules where she has them on 3 doses before finally going to 2 after crossover is complete but really, dosing is a personal choice that  depends on your needs and lifestyle.  They can be any amount that serves you best, if you need extra help in the morning, take more of your dose then, if you need it for sleep, then make your nighttime dose the heaviest.  Bottom line is at the end they all have to go but why not use the drug to minimize your discomfort for as long as you can?  https://www.benzo.org.uk/manual/bzsched.htm

 

And holding, a patient led symptom based taper is what we hope everyone has the freedom to do, when life happens we need to be able to hold when the need arises.  This is the whole purpose of a taper, to use the drug to mitigate symptoms while getting off of the drug.

 

Edit: Thanks Libertas for asking pertinent questions, here are the instructions for adding this information to your signature.  If you have problems a team member can input it for you. Add your history/signature 

Hey Libertas,

 

I will summarise history later today or tonight. It’s after 7am where I am… insomnia, haven’t slept a wink. Just need to put my head down for a while. Will cover all those questions a little later.

 

Thanks for the prompt!

 

I’ve been meaning to get around to it for a while.

 

Thank you!

 

 

Thanks Pamster,

 

That clarifies so much for me, so appreciative!

 

 

Also,

 

thank you, for the link… will add history later today, hopefully after a little sleep 😴

Very good, Winters sun.  Signatures can be helpful both for the member seeking input as well as those providing it.

 

Re: talking to your prescriber about increasing your dose …

 

In addition to describing the symptoms you are experiencing, the information in the Benzodiazepine Equivalence Calculator for a clonazepam to diazepam conversion may be helpful to both you and your prescriber.  It includes the following sections:

 

About This Calculator

Large Dosing Ranges

Issues with Benzodiazepine Conversions

Impact of Dosage Forms

References and Additional Reading

 

As well as what I regard as a key quote:

 

“Given the numerous issues with benzodiazepine equivalence, the importance of reasonable clinical judgment, clinical experience, appropriate patient monitoring, and dose titration are of even greater significance.”

 

 

Hi Libertas,

 

Just in regard to a couple of your questions - the first couple of weeks after switching to diazapam, the sedative aspect seemed to be of help… could barely keep my eyes open after dosing, but all of the symptoms of cold turkey remained beneath the sedation. The internal shaking, head and jaw aches, pain stemming from the bones in my legs, nightmares, especially close to morning wake up. Depression, anxiety etc. interdose withdrawals have been there from the beginning, but it’s possible that they have intensified since 1mg cut 2 1/2 weeks ago, with extreme anxiety, fearful thoughts and so many other symptoms. Maybe it’s so intense because I was never stabilised before the drop to 9mg. I really don’t expect to get by without difficulty, but it’s just been at that extreme end of the scale like when I was cold turkey. I see my doctor on Wednesday, so we’ll see how that goes, in regard to updosing.

 

The main thing I’ve noticed is - the physical and psychological symptoms have been intensifying earlier and earlier between doses. However, it does seem to be worse since about a week or so after the dosage cut and haven’t decreased since.

 

Is it essential to updose to stabilise or will stabilisation still occur if I hold for a long enough period at the present dose?

 

I’m assuming that by the calculator, my initial Valium dose should have been more like 15mg or there abouts, rather than 10mg?

 

Thanks for the help, Libertas

 

It’s very much appreciated!

 

Thank you for adding your signature.  This is very helpful.  I am not a heathcare professional but one hypothesis is that starting and discontinuing multiple psychoactive medications (including two benzodiazepines) in a relatively short time frame is contributing to your current distress.  It’s also possible you are either under-dosed on the diazepam and/or have become tolerant to it.

 

Re: your question about holding …

 

Regrettably, there’s no way to predict if holding will result in stabilization for a given individual.  It works in some cases but not in others.  A question to ask yourself is “Will I be able to tolerate the symptoms and remain as functional as I need to be if I decide to hold?”

 

Re: your question about what your initial diazepam dose should have been …

 

There’s no way to know.  Based on what you’ve shared with us, it sounds like you might want to discuss the possibility of titrating your dose upwards from 9mg with your prescriber.  (I’ve included a link below that explains titration in case you aren’t familiar with this concept.) Generally speaking, it’s safer to ease your way up than to make large increases.  So, for example, you might begin with a dose between 9mg and 15mg (e.g. 12mg or 12.5mg).

 

If you have not already done so, might I encourage you to educate yourself about the diazepam dosage forms available in your country?  For example, in the US, dosage forms include 2mg, 5mg, and 10mg tablets with functional score lines as well as a 5mg/5mL (1mg/mL) oral solution.

 

Link:

What Does ‘Titration’ Mean? – Cleveland Clinic

https://health.clevelandclinic.org/what-does-titration-mean/

Thanks, Libertas

 

It’s plenty to think about.

 

Yes…., in Australia we have 5mg, 2mg and as I’ve recently been informed, it definitely is possible to get 0.5mg Valium tablets, although I would probably have to ask the pharmacist to order them in. We apparently do have the oral solution also, which I have discussed with my prescriber recently, however, she said would not be on board with the oral solution, primarily (I believe) because she has very limited knowledge about tapering, or for that matter, benzodiazepines in general… just how painful the taper and withdrawal process can be for so many, which is guess is why she initially tried to push for 2.5mg cuts after telling me the 10mg valium I was taking was like drinking lolly water. However, she is leaving the practice for Ireland very soon and will have to pass me on to another doctor. Luckily, the psychologist I’m seeing is trying to hook me up with a ‘suitable’ doctor, one who mostly works with drug and alcohol withdrawal.

 

I have a appointment with my doctor tomorrow, so I will discuss titrating my dosage upwards, as you mentioned. She did initially tell me she didn’t want me to updose at any stage during in the taper, but we’ll see how it goes.

 

In regard to a potential case of tolerance… would it still serve to lift that dosage, or possibly only prolong the same painfully difficult tapering process? 

 

Many thanks

 

J

 

Taper planning does indeed give us ‘plenty to think about.’ 

 

Tip of the hat for researching what diazepam dosage forms are available in your country (Australia).  A search of the Australian Register of Therapeutic Goods (ARTG - see link below), yields entries for 10mg, 5mg, and 2mg tablets as well as an Orion Diazepam 10mg/10mL oral liquid (ARTG ID: 42852).  However, I do not see an entry for 0.5mg tablets.  I wonder if these are professionally compounded instead of commercially manufactured?

 

I’m glad you and your psychologist are searching for a more ‘suitable’ doctor.  Are you aware of Reconnexion in Victoria? 

 

Links:

 

Australian Register of Therapeutic Goods: TGA Search

https://www.tga.gov.au/search/node

 

Reconnexion - Treating Panic, Anxiety, Depression and Tranquilliser Dependency

http://www.reconnexion.org.au/

Yeah, I had never heard of 0.5mg tablets either, and it’s funny you mention Reconnexion, because I often use their support line (lovely people), and it was actually one of their support line staff who assured me that you can definitely get 0.5mg tablets. Maybe they were mistaken, although they seemed so sure. Possibly you do have to go to a compounding chemist. Reconnexion have been of real support over these last couple of months. I live in Tasmania, so I can’t access their other various supports… but so glad the support line is accessible for anyone within Australia.

 

Thank you, for the links.

 

I had a 24hr period in the last couple of days where I felt some symptoms had settled, but then about an hour after my morning dose yesterday, anxiety heightened considerably as it often does after dosing. Don’t know why. Some symptoms have disappeared, and the remaining symptoms (anxiety, body pain and insomnia) seem to escalate after dosing. Seems paradoxical.

 

I think I have to face the idea that I may always have quite an intense level of discomfort while tapering.

Because it’s only early days, I’m still trying to figure out where that baseline is for me to taper from, and just tolerate it as best I can. It’s taken about 3 weeks from my first cut to get to this all so slightly decreased level of discomfort, but I sense those remaining symptoms are probably going to hang around for the duration of the taper and in to the acute stage.

 

Thank you for all your feedback, Libertas!