gemgirl1: Now tapering off Valium, need help!

[gemgirl1]

Hi everyone, glad to be here. Heres my story....

 

I have not taken medication for over 16 years and I wished I would have just lived with the horrid insomnia! I was prescribed Lorazepam in 2008 due to insomnia when I first got severe tinnitus. I could not wean off of it so my Dr put on Clonazepam and I did a slow taper over years and came off no problem. I still continued to take Lorazepam PRN. Due to severe insomnia due to a devastating increase in my tinnitus and increased hyperacusis end of 2021,  I started benzos again. I have been tapering Valium for over 2 years .25mg every 3 weeks and things were going well till the end of my taper. I tapered down to .25mgs with very few withdrawals but instead of jumping decided to cross over the liquid Valium to taper down further which did not go well. Tapered to .24mgs and held for a week with bad symptoms so switched back to pills with little problem. At this point I thought I had an infection so ended up taking a few doses of an antibiotic which threw me into complete withdrawal like CT with horrible symptoms (burning skin). I have been struggling feeling hopeless for over 3 mths in withdrawal, completely devastated and unstable.

 

It was suggested by a few people that I hold  at .25mgs and I did so for over a month but with no improvement. I have completely ruined my taper and feel there is no way out for me. I did try to updose up to 1mg twice but due to fear and changes in symtoms, I panicked  and tapered back down to .25mgs again and kept holding (not good). I have been in this unstable state since the end of may and my Dr wants me to come off the valium so I to cut to .24mgs which is where I am holding now. I suppose I could just jump at this low dose but so scared being unstable.  I am so worried that holding on such a low dosage for so long has put too much stress on my already destablized CNS. My symptoms have just gotten more severe esp my catastrophic tinnitus. I am terrified and don't know what to do. I am so scared to taper down due to more symptoms and wonder if I should updose again to higher dose and hold. I feel I should have now updosed in the beginning. I feel I just can't seem to make the right decision, very confused. So stuck and hopeless, has anyone else experienced this taking an antibiotic? I should have known better, I am so angry at myself. Would greatly appreciate any kind advice or suggestions. I can't go on like this.... Thanks so much....

 

gem

 

 

Edited September 10 by Emonda
Added heading as requested

[Catwoman73]

Hi @gemgirl1, and welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications, and their associated withdrawal syndromes. 

 

I'm very sorry for the difficulties you are facing.  Your story is not an uncommon one. If you could kindly complete your drug signature, we would greatly appreciate it.  Your drug signature is a summary of your history with psychiatric medications that appears at the bottom of each of your posts.  This is helpful for us mods, so we can access your history at a glance, and don't have to go through pages of posts to see where you have been.  To do this, click the following link, fill in the box to the best of your ability, and click save.  That's it!  You can have a look at my signature at the bottom of this page for reference, to see the general format. 

 

Your Drug Signature

 

Your signature should be updated as you make changes, so that we are always aware of where you are at. 

 

Tapering by 0.25mg at a time is what is known as linear tapering.  Linear tapering is problematic, because these drugs have a much larger impact on the receptors in the brain as your dose gets lower and lower, so a 0.25mg cut might be no big deal at the start of a taper, but as you get to lower doses, you will almost certainly be kicked into withdrawal with the same cut.  Here at SA, we recommend tapering by no more than 10% of your current dose, no more often than every four weeks (so, as an example, 10mg-9mg-8.1mg-7.3mg and so on). This is known as hyperbolic tapering, and is very helpful in minimizing withdrawal symptoms.  You can read more about hyperbolic tapering:

 

Why taper by 10% of my dosage?

 

In the case of benzodiazepines, it is probably wise to go significantly slower than this- 5% every one to four weeks would actually be a FAST rate of taper.  Many who have destabilized nervous systems have to go much slower, with as small as a 1.5% cut every four weeks. 

 

A switch to liquid formulation and the use of antibiotics are definitely triggers for significant setbacks.  Many here make the switch to liquid formulations slowly- taking 1/4 of their dose as liquid, 3/4 as pill for a few days to a week, then half and half, and so on.  This can help reduce the symptoms a little bit.  And antibiotics are just sometimes necessary- I took one last January, and endured a four month setback as a result.  I know this is no real comfort, but I hope it helps to know that you are not alone!

 

The question is most certainly what to do now, right?  

 

I think your hold of one month was likely much too short.  When destabilized, it can take many weeks to months to find any degree of stability again. I think you are going to need a hold of at least three months on whatever dose you choose is what is going to be necessary at this time.  I would strongly recommend you start a symptom journal right away, tracking each of your symptoms every day, rating them on a scale of 1-10.  This will allow you to have a visual record of how your are proceeding, rather than relying on memory, which is inevitably flawed when we are suffering.  You can use the following list of typical withdrawal symptoms as a template for a journal, if you wish.  While it does state that it is an antidepressant symptoms list, this applies to benzos as well. 

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF)

 

As you hold, you will notice days/weeks where you feel a bit better, and days/weeks where you feel worse.  This is a very good sing of healing, and is known as the windows and waves pattern of stabilization.  You can read more about windows and waves in the following thread.  Keeping a journal can help you identify your windows and waves a bit easier. 

 

The Windows and Waves Pattern of Stabilization

 

Just FYI- jumping off from 0.25mg is WAAAAY too high.  At 0.25mg, you still have 30% of your GABA receptors occupied by the drug.  That would be like jumping  off a cliff.  You will need to likely taper to as low as 0.01mg in order to safely come off these drugs.  So even once you stabilize, you will have a bit of a journey ahead of you. 

 

If, at the end of a longer hold, you feel no better, or you felt better at first, but then started to backtrack, you might wish to try a very small cut at that time to see how you fare.  I can't emphasize the importance of the journal enough- relying on your memory will not be accurate over a longer period of time. 

 

While holding, there are a few things you can do to help with healing.  Most are rather intuitive.  Eat a balanced, whole foods diet (food additives and preservatives can be triggering for some), stay well hydrated, get enough rest/sleep, and get gentle exercise (intense exercise can trigger symptoms.  Avoid all neurologically active substances, such as caffeine, nicotine, alcohol and recreational drugs.  For many of us, using these substances is like pouring gasoline on your withdrawal symptoms.  Also. avoid taking other psychiatric medications to treat the withdrawal symptoms of psychiatric medications.  The effects are not predictable when in withdrawal, and there is a good chance that taking something else could make you feel worse rather than better.  Not to mention, you would just be creating a situation where you would have to taper off of something else in the future, thereby prolonging your withdrawal journey.  

 

We only recommend two supplements here at SA- magnesium and omega-3 fatty acids.  Do be mindful though- it is common for those of us in withdrawal to become hypersensitive to all sorts of things, including medications, supplements, and even foods!  If you choose to try anything, including our recommended supplements, start with a very low dose.  If you tolerate it well, you can increase slowly over time.  I am a fine example of this hypersensitivity- magnesium gives me brain zaps and insomnia!  

 

As for dealing with your symptoms while you hold, we have many, many threads here on coping with symptoms without drugs.  I'll link some of them below.  It's important to start exploring these (and others that you figure out yourself) right away.  It takes a lot of practice for these to be effective, but I can assure you, it's worth the effort.  I practice mindfulness all day every day, and I use guided meditations/yoga Nidra at night.  These things are the cornerstones of my ability to cope, but it took time and lots of practice to really start seeing a difference.  I also work hard to incorporate CBT techniques, such as box breathing, challenging negative thoughts, etc in order to avoid emotional spirals.  Distraction is also my best friend- I love to swim (I feel normal in the water- it's amazing!), and do art projects to keep my mind and thoughts occupied. 

 

Non-drug techniques to cope with emotional symptoms

 Easing your way into meditation for a stressed-out nervous system

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

Ways to cope with daily anxiety

"Change the channel" - dealing with cognitive symptoms

Dealing With Emotional Spirals 

Shame, guilt, regret, and self-criticism

Symptoms and self-care

 

It's really important to avoid catastrophic thinking here.  You haven't ruined your taper- you have encountered a setback.  If you give your nervous system stability, and treat yourself well, supporting your body's ability to heal, it will find homeostasis again.  We are all healing, all the time, whether it feels like it or not. 

 

In summary, I think a longer hold is in order right now in order to allow your nervous system to calm down a little bit.  Future tapering would be best approached hyperbolically, and jumping off should not happen until you are tapered to 0.01mg.  This advice comes directly from our bible around here- the Maudsley Deprescribing Guidelines by Mark Horowitz and David Taylor.  While holding, it would be beneficial to start a symptom journal.  You can track your foods and activities as well to help identify symptom triggers.  This will help you identify your window and waves.  And most importantly, start working HARD on your non-drug coping mechanisms.  These will carry you through the tough times if you are consistent with them.  

 

Most importantly- don't give up!  You are not alone!  Not even a little bit alone.  If you haven't already, I would recommend checking out Angie Peacock on Youtube- she is a polydrugging survivor herself, with a lengthy benzo history.  She is now a social worker and tapering coach.  She interviews survivors, and always ends her interviews with messages of hope.  These help me through my darkest days.  

 

This is your introduction topic- each member gets one intro topic.  Please post updates or questions here, on this thread.  But do explore the rest of the forum- there is lots of good information here!  Also, if you feel up to it, have a read of other members' intro threads as well, and drop a comment/ word of support.  I have found it extremely helpful to have surrounded myself with the people in this community, who all fully understand the challenges that come with being in withdrawal.  It can be a very lonely journey without people in your life who fully understand.  We can be your people!

 

Sending you lots of love and healing vibes!  You WILL heal!!

 

 

[gemgirl1]

Hi @Catwoman73,

 

Thanks so much for such a detailed wonderful response. I tapered .25mgs starting at 10mgs Valium and lowered .25mgs (which is about 5%) from last dosage every aprox 3 weeks. If I held longer I started to get symptoms. I continued this rate for over two years til end of May when my CNS crashed due to antibiotic. I virtually no symptoms except worse tinnitus. According to the Aston Manual the jump rate for Valium is 1 - .5mg which is a very low dosage. However, I chose to continue tapering down to .25mgs when I switched to liquid with bad results. Currenly I have done two cuts .001mgs every 4 wks currently at  .23 mgs as of last night. My symtoms esp my head symtoms, severe pressure and tinnitus are worse. I also think I am in tolerance withdrawal b/c I feel worse after I take my dose which makes it difficult to hold. I think the guidelines for ADs are alittle different.

 

So you think I should continue to hold? The problem is I cannot go much slower that .001mgs b/c I am using a compound RX in form of capsules which is why I planned to switch to liquid. I have been holding at .25mg for about 3 mths with symtoms getting very severe. Since I have bad luck with the liquid, what are my options? I am scared to change to another method at this point since the liquid V did not work for me. I have been told by people to jump, that my dosage is so low that I am prolonging healing but each time I have cut my symtoms just get worse. I feel I should have updosed since it was like a CT in the beginning when my NS first destablized but its two late now. I have also been told that such a low dose (therapeutic dose) will not return my system to its original state eliminating my more severe symptoms like burning, tingling skin. Have you ever had this symtom? Its horrid and makes me so scared....

 

I know most people on here are tapering ADs but I would appreciate any feedback or advice from anyone who has any experience tapering benzos. Thanks so much....

 

 

gem

[Catwoman73]

If you want to check out a much more current guideline on the tapering of benzos, I would recommend you purchase the Maudsley Deprescribing Guidelines.  This book has only just come out, and recommends a slower, hyperbolic taper from benzos, dropping down well below therapeutic doses.  Ashton is over 20 years old, and a lot has been learned since that was released.  This is where I took my advice to you from. 

 

You may need to change to a liquid much slower.  Like I said above, many here who are very sensitive do it in increments, taking 1/4 of their dose liquid, and 3/4 pill, then half and half, and so on.  I had little difficulty with my switch to a liquid formulation, but as a moderator, I've seen lots of others who have a very tough time.  Slower is better!

 

I'm curious- who is telling you to jump off from 0.25mg?  And who is telling you that you cannot stabilize on a low dose?  This advice does not seem to be  in keeping with the most current psychiatric drug tapering advice combined with your particular history of very long term benzo use.  I will PM you the pages from Maudsley on tapering Valium- note that my recommendation to taper slower and to much lower, sub therapeutic doses is based on the length of time you have been on them, thereby using the slowest tapering schedule recommended by Maudsley. Those who have only been on these drugs for a few weeks can typically stop with the fast and moderate schedules. 

 

I do have regular issues with nerve pain, tingling etc.  It sucks.  By working on mindfulness, meditation, and learning to just relax and accept my symptoms though, I don't give these things much thought anymore.  When things are bad, I have learned to just roll with it.  I didn't get here overnight though- it has taken a huge amount of work and practice with the non-drug coping mechanisms to get here.  Like I said- it is work that is worth doing!!!

[gemgirl1]

@Catwoman73,

 

Thanks for your kind response. Congratts on your progress, you are so strong! Both the FB group and some people at BB'S also told me to jump and yet a benzo coach and Mark Horowitz told me to hold. My doctor wants me to try coming off but I am so scared which is why I started tapering again. If I can't handle a .001ml dose reduction whats going to happen if I just stop. I fear this is a death wish. So confused, I thought SA seem like a rational and kind place for me to be.

 

Are your symptoms mostly mental for physical? I had virtually no symtoms until my failed taper, but I seem to get the burning symptom. Do you have any idea why? I tapered for 2 years yet since my NS crash my symptoms seem more in line with someone who CT or rapid tapered. Since I tried to updose but jumped back down again, I am worried about kingling and  protractive withdrawals. I just feel like I am doomed. My symptoms also seem to worsen after my dosage, why is this happening? Am I kindled or in tolerance withdrawal.  So afraid, and devastated and tired....appreciate you great advice.....

 

P.S Is there a reason why no one else has responded my post? Is my post ok? I would love to hear more on peoples experiences with benzos and tapering.....

 

 

gem

 

 

[Catwoman73]

If Mark Horowitz is telling you to hold, then I would hold lol... he wrote the Maudsley Deprescribing Guidelines.  There is no one on this planet more informed than he is!!!  His work is the very underpinning of what we do here on this site.

 

I have found that BB tends to be in favour of pushing a lot faster and harder than is probably wise for most people.  They weren't always that way, but that seems to be their latest trend.  We tend to lean more towards the slower and more cautious approach, because that's what the latest science is telling us.  I have no idea what goes on in Facebook groups for benzos specifically, but I know there are some antidepressant groups on Facebook that give very good, informed and current advice, and there are a few very misinformed groups out there sharing dangerous 'information.'  Be very careful who you listen to.  I would certainly listen to Mark over the Facebook groups.

 

I think you can't handle even small reductions right now because your nervous system is severely destabilized.  You tapered in a linear fashion rather than a hyperbolic one for two years, and it caught up with you.  This can happen on any psychiatric drug- not just benzos.  Hyperbolic tapering is incredibly important because ALL of these drugs have incrementally larger effects as the dose gets lower and lower.  

 

As an example, using your drug Valium... say you dropped from 10mg to 9.5mg- that's a 0.5mg drop.  This represents a change from having 44.7% of your GABA receptors occupied to 44.3% of your receptors occupied.  That's only 0.5% receptor occupancy difference, which most people tolerate really well.  

 

But making that same 0.5mg drop when changing from 1.0mg to 0.5mg represents a drop in receptor occupancy of 6.5%, which may not be tolerated well at all.  (data taken from the maudsley deprescribing guidelines).  

 

So as you can see, tapering by the same amount in mg with each drop means that an increasing number of your receptors in your brain are not occupied anymore, with generally means greater and greater withdrawal effects as you proceed.  Many, like you, suddenly hit a wall at very low doses, because linear tapering does catch up with you- often suddenly, and without warning. 

 

It is possible that your sudden updose  to 1mg has created some degree of hypersensitivity, but given how little time you were on that higher dose, you should be able to stabilize on your current dose.  You are most certainly not doomed- I would really recommend you watch some of Angie Peacock's videos on YouTube.  If Angie can heal, given what she went through (has been on over 40 psychiatric medications in her life, sometimes 18 AT ONCE, this included benzos), anybody can!

 

Because this is a peer support forum, each member gets assigned a primary moderator, who keeps an eye on your thread.  That's me!  But in terms of others responding, as a general rule, you get what you give here.  If you engage with other members, they will engage with you as well!  If you want to seek out people who are experiencing the same things as you are or are withdrawing from the same drug, you can use the search bar in the top right side of the page.  Type in your search term (valium, or benzodiazepines, or whatever), and make sure that 'everywhere' is highlighted in the drop down menu on the right side of the search bar before clicking the search icon.  A list of members with those search terms and their posts will appear.  Not all members are currently active, but reviewing their threads may give you some insight.  If the member appears to be currently active (still posting), you can absolutely reach out to them by asking questions on their thread.  Also, do check out our success stories forum- I spend lots of time there on the bad days.

 

Success Stories- Recovery from Psychiatric Drug Withdrawal

 

 

 

 

[gemgirl1]

@Catwoman73, Hi thanks for your response.

 

Sorry for the late response, I have been feeling really bad since my last cut to to .23mg. Actually, I tapered .25mg of 10 mg Valium not .5mgs which I thought was too fast. So you are saying that I need to go slower than 5%, but the problem is how, since I am afraid to add any new methods to my CNS right now. Thanks so much for offering to send the guidelines, I looked them up on BICs website but I do not see what dosage to jump at for Valium? If you get a chance to checked the conversion tables you will see that  .25mg Valium is a very low dose. I have watched many of Angies videos but my problems are mostly physical and hers seemed more mental which really worries me. She also saw steady monthly improvement and I seem to be getting worse although I am not off yet. I am so discouraged, why am I getting worse? Am I in tolerance withdrawal? Have I kindled or is this an indication of future protraction, so scared and lost. At this point, I don't know how I will get off this drug.  I will have to hold for now and hopefully stablize, but where do I go from here. Looking forward to hearing back your great advice.....

 

gem

 

 

 

[gemgirl1]

@Catwoman73, I really appreciated your great advice. ❤️

 

I really could use some more help! It seems like now each night when I take my dose .23mg Valium, my symptoms continue to get worse. My head symptoms are now torture with continued increased head and feet pressure and debilatating tinnitus and I don't know what to do? I am currently holding on .23mgs...Any thoughts on whats happening? I am really scared that this will continue until I can no longer cope....My Dr talking about me updosing....your advice and kind words would be greatly appreciated. 

 

gem

[Catwoman73]

I think if you are feeling worse rather than better after the last couple of drops, maybe a small updose might help.  I think it's worth a shot.  The key is to move slowly- making a big jump like you did previously can set you up for a hypersensitivity reaction.  Maybe try going up to 0.25 or 0.26, and holding for at least a week (up to two weeks) to see how you fare.  If you feel a bit better, or at least no worse, you're heading in the right direction.  I'll attach our thread on hypersensitivity and kindling for your review- if you feel that horrible inner agitation, burning anxiety in your chest, or just generally more activated than you do right now, drop right back to 0.23, as that would be a sign that you are heading in the wrong direction.  Unfortunately, there's no way to predict how you will react, but my best guess is that you are struggling to stabilize after dropping from 0.25 to 0.24 then 0.23.  All you can do is try a small updose.  Let me know if you decide to try it, and how you are feeling over the next couple of days.  

 

Hypersensitivity and kindling

 

Sending hugs... I know this is just awful.  I so wish we had better options, but sadly, the only way out is through.  ❤️‍🩹

[gemgirl1]

@Catwoman73Thanks for your kind words.

 

So I decided to to updose back to .25mgs but it did not help. In fact I think its worse, can't really tell but getting symptoms (burning) coming back. I have taken 2 doses wonder if I should go back down but going up and down is not good for the CNS. Being told to stay or updose, what do you think? So confused, Your wonderful suggestions and advice are greatly appreciated....

 

gem

[Catwoman73]

I'm sorry you're struggling.  You may just be in a wave right now.  Waves are going to continue to happen throughout this journey, so you don't want to make impulsive decisions because of a day or two of possibly feeling a bit worse.  Two days is not really long enough to determine anything- give it AT LEAST a week.  The fact that you say that you think it's getting worse but can't really tell makes me think you just haven't given it long enough to see the real effect.  What you don't want is to keep jumping around with dosages- you felt worse after dropping from 0.25 to 0.23, and now perhaps feeling worse again after going back up.  If that is indeed the case, maybe it's time to do nothing, choose a dose and just hold.  The fact that Mark Horowitz feels you should just hold is enough to make me think that would be the right course of action.  You can hold at 0.23 or 0.25- your choice.  The important thing is the stability, not the exact dosage. 

[gemgirl1]

@Catwoman73 Thanks for your response.

 

As the day progresses my burning symptoms are worse, really hard to cope with. I was stable at .24mgs. Mark wanted me to stay at .25mg but holding at this dosage for so long, my tinnitus started to get really bad so thats why I tried to taper again and my tinnitus got even worse. I just don't know anymore, I feel like I am going in circles. Everything is so bad, my B-day is Friday and I feel like my life is over. I read that kindling is going on and off the drug but perhaps hypersensitivity is caused by going up and down on dosages, what do you think? If I hold longer on this dosage won't it make worse to drop to lower dose later on? I also noticed there is a benzo forum, should I also post there? Look forward to hearing back with your great advice...

 

gem