PLEASE HELP: Wife has hit a wall on Valium Taper

Hi all,

 

I’m “SnapDragon”s other half. Because she is still in the midst of a benzo crisis, she asked me to let you guys know what’s been going on with her, and see if you have any guidance for us. We are simply asking only those of you who have been in similar circumstances, to share what you had done right, or done wrong. We are NOT seeking direct medical advice here, just your experiences and relevant input. When it comes down to planning our future strategy, it will be done in conjunction with medical professionals. We just want to cross check everything. We can’t afford to make any more avoidable mistakes. It’s pretty obvious that Snap is extremely sensitive to even the smallest dosage changes. Her crisis is the reason why she hasn’t been able to do any posts on BB for a couple of months. You can see in her profile, and previous posts, the things that had happened to her last year.

 

In the fall of last year, she did a successful and relatively painless transition from clonazepam to the equivalent dose of diazepam over a period of about six weeks.

 

Starting on December 14th, 2013 we started her taper from her stable transition dose of 5 mg per day of diazepam, still split across 3 doses per day. We reduced the dose by 4% per week (percentage based on the immediately preceding step). During the following few weeks we also simultaneously smoothly transitioned from three evenly spaced doses to two, gradually ending up with equal morning & evening doses at 8:30 AM & PM. During the first 3-4 weeks she felt progressively better. We even managed a careful, short day trip to the Oregon coast.

 

In the middle of January, 2014, she started to see her mid-week symptoms worsening. At the time they were tolerable, and we both figured that the taper was finally beginning to stabilize at a steady downslope, because of diazepam’s long half-life. Unfortunately, by around the 20th of January, she was beginning to crash and burn. By the following Wednesday, her tolerance/withdrawal/paradoxical symptoms were horrible. That morning she had what I should describe as an awake seizure that lasted for about 45 minutes. As of 1/18/14 she was holding at 3.88 mg per day. By 2/7/14 her symptoms had abated to the point that we decided to resume her taper at half the rate, making a 1% drop twice per week.

 

Starting on 2/26/14, she was down to 3.64 mg per day. By then her symptoms had gotten to the point that she was again in misery. We have been holding at 3.64 mg per day since then, and her set of symptoms has not improved as of today (3/15/14).

 

In the last week or so, I have been doing more research. On my recommendation, our GP consulted with an experienced Psychiatrist on the teaching & practicing staff at Oregon Health Sciences University in Portland. Because Snap is only on 3.64 mg/day of diazepam, and the fact that tapering is not going well, he recommended that we consider a quick taper to zero over a period of 10-14 days. He seemed to think that, at her current low dose, that there isn’t much chance of a serious seizure. Based on everything that we have learned over the past year, we are in doubt about this recommendation. This recommendation could set her up for a really rocky road for several months, plus run the risk of even more CNS damage.

 

I have steered our GP to two other more local prospective sources of reliable information, a registered nurse who specializes in addiction, and seems to be very benzo-wise, and a Psychiatrist whom she wholeheartedly recommended as her top choice for benzodiazepine-related issues. I should know more information on this fork in the road later this week.

 

Because Snap hasn’t had any sort of life worth living because of the benzos for the past year, she has said many times, that she just can’t go forward with the prospect of tapering under the same set of horrible symptoms for years more. She is seriously considering the viability and risks involved with the very fast taper option recommended by the one Psychiatrist. What are your thoughts?

 

The following is a current list of her symptoms:

 

• Stomach sick / nausea 24/7, worse after AM diazepam dose or stimulus.

• Disturbed, intermittent sleep (must still sleep alone).

• Some visual disturbances. Flickering light (like a loose bulb). Undulating colors with eyes closed, especially when trying to settle down or trying to sleep.

• Broken “thermostat”. Worsened by stimulus, eating or stress.

• No appetite, general repulsion to food.

• Some muscle twitches, jerks, made worse by stimulus, stress.

• Tinnitus, mild but still disturbing.

• Headache, almost constant, mild to moderate+

• Heart Palpitations, occasional racing pulse. Random and sometimes spurred by stimuli.

• Exaggerated pain sensation. Continuous mild to moderate general aches & pain, especially any old injuries, surgery sites, even blood draw sites (the ones from weeks ago still hurt).

• Oversensitivity to just about everything. She described it like a precarious house of cards ready to collapse, never to be put back together.

• Physical & mental exhaustion.

• Disorientation.

• Difficulty communicating (physically & emotionally). Often can only speak at a whisper. Occasional stuttering (Snap NEVER had a history of stuttering). Cannot tolerate communication by phone, email, FaceTime, etc. Cannot handle the extra stimulation caused by visitors. This is VERY abnormal for her. Communications were her “speciality”. The Mouth always worked . . .

• Weakness, dizziness, instability.

• “Electric chills”, mostly during the 3-4 hours following a diazepam dose. Sometimes occur at other times, usually when trying to “zone out”/fall asleep.

• Anxiety / Panic. Varies wildly, but never is gone. Worst just before, and after diazepam dose, before the drowsiness sets in.

• Depression – occasionally.

• Often fidgety, fussy, impossible to get comfortable because of all the conflicting and paradoxical symptoms.

• Agitation, just about any stimulus triggers it.

• Cog-fog, worst during the few hours after morning diazepam dose.

• Involuntary muscle tensing. Need to move until it settles down.

• CNS “breaker box” switches randomly light up and turn off erratically, as if someone else is controlling them. Stimulus makes it worse.

• Complete and utter despair.

• Exercise or exertion is just about impossible for her. Attempted activity makes most other symptoms worse.

• Cannot do ANY previously normal activities. Snap WAS a very vibrant, healthy, active person before February 2013.

 

We are both at the end of our ropes. The benzodiazepine is killing Snap.

 

Many of the above symptoms consistently show up in widely published guidelines that contraindicates the use of the drug. Recommendations say to immediately discontinue its administration. What do we do in a situation like this?

 

Thanks in advance for your thoughts!

SnapDragon's other half (AKA Good Cop; you can guess who the Bad Cop is. . .)

Hi,  Sorry to hear this.  I had a similar experience at about 3.5mg valium.  I had overtapered and needed to go back and re-taper at a slower rate.  That, however, is not what I chose to do.  I instead reasoned that since I was "close" to zero I could simply keep tapering at a very slow rate.  This was not a good choice and it has been a very rough road ever since.  So I would not advise it. 

 

It bothers me that she actually had a seizure and I wonder if she should get on a med to protect against that?

 

My thought is to taper backwards a day at a time until she feels better, then hold there for a bit. Or just go directly to the last dose she felt good at and hold.  And then come back down slowly.  The saving grace is that tapering is not as painful or long if you feel good.

 

I know the agony of having to decide to go backwards and give up hard earned ground.  I remember thinking to myself, "what if I go back and it doesn't work?"  But I made the wrong choice by pressing on.

 

From my experience I think the docs advice to rapid taper off will not end well.

 

I hope she finds relief soon.

Oh, another very important thing to consider that I forgot to mention.  The perceived time I saved by pushing to zero was not real.  It has simply been added to to my post taper time.  In fact, in my case, I am quite certain it resulted in more time than a slow taper would have taken.  I would have been much better off doing what it took to get myself feeling good again, and that meant updosing.

Hello Snapddragon's other half,

 

Congrats to you for supporting your wife through an extremely difficult time in her life. Please understand that she is going to be ok regardless of which decision you both decide to take. She just needs more time for her cns to heal. If it was myself, I would probably taper off of the medicine over a two week period and begin the healing process. Yes, she is still healing when she is tapering, but if she is sick as hell during the taper that is not good. I tapered over 9 months and was still very sick the last few months. I am much better now at 3 months out.  Good luck to you both ! 

Hello Mr Snap,

 

Thank you for caring and for being an advocate. From that, from your careful post, the fact that you have any idea what's going on with her, I know she will be ok, eventually. About half the battle is having someone guard us while we heal.

 

It seems from your post that Snap has a three week thing going on. As in it takes her three weeks to acclimate  not 10 -14 days. That's not unusual. Were I you, I would proceed cautiously and wait the three weeks before making another cut.

 

Or the other option might be a daily micro taper. If your interested in that, there is a whole thread dedicated to it. Just say the word and we will provide a link.

 

I see nothing in the symptoms list that is unusual. The awake seizure is a little concerning. Can you say more about that? Were there convulsions involved?

 

Everything you list has been experienced by most of us, if not all of us. Certainly, I experienced them all.

 

I hit a similar wall at about 2 mg and opted for the daily micro taper. It took me 8 months to drop that last two mg. I also used Clonidine during my entire taper, which I think helped a little with the anxiety. It requires a taper, which I'm doing right now. So far, it's been relatively painless. I'm down to -/8th of my prescribed dose.

 

Some people have used gabapentin or Neurontin with good results. Both of these have at least some neuroprotective properties in regard to glutamate. Both require a taper but as I understand it, that taper is not like a benzo taper.

 

The revulsion to food is not necessarily typical. Some of us eat constantly and pack on the pounds. A few can't gain weight, no matter how much they eat. I've seen some evidence that sufficient carbohydrates are absolutely necessary for neuron health during this process. If Snap can't eat, perhaps you could find her a good meal replacement that does NOT have sugar in it. Nothing like Ensure. Your local health food store could offer some viable alternatives.

 

Regarding advice to up dose until you find a level of comfort...it might be worth it, just to know for sure that's what she's reacting to. But considering it's been three weeks since you've been holding and she's been having these symptoms, I really think Id just ride it out, then proceed very cautiously on down.

 

As much as anything, she needs to know you understand and that you will stand beside her to the bitter end. On days when she can't see people, just know that this will pass. There is nothing wrong with her social functioning on a permanent basis. It will pass, once the glutamate settles down and the cortisol is under control.

 

I hope your new psychiatrist can shed some light. Don't be disappointed if not, though. We are rare in the benzo world. Many people taper this like other drugs and are fine. Someday we will know why this is. For now, we don't. We just have to accept that it's true and get on about the task of healing.

 

It took me 22 months to taper. Most of that was on the last 10 or so mg of Valium. I do not regret that slow taper.  I am 16 months out now. My improvement was gradual but steady. I'm driving, shopping, taking care of an elderly mother, volunteering, even going back to school (at 59). I'm just now sleeping 8 hours. I'm cleaning my house again and answering the doorbell with ease, talking on the telephone  going to church, etc. From the outside, I seem very functional. I still have minor things, like I get upset more easily and overwhelmed sometimes. As long as I take care to make down time for myself, I'm ok.

 

I had an extremely supportive husband. He listened to me and reminded me I was getting better and reinforced that he would do what it took to help me. He cooked and brought me meals in my recliner. He covered me against intrusion from the outside, sometimes even fielding calls from my family if I was "too scared to talk". I'd say, other than time, he was the most valuable ally for me. The other thing was this forum, these people. I would have committed myself or killed myself if not for the lovely people here.

 

We will help you however we can, Mr Snap. It's going to be a long few months for both of you. Remember to practice self care, too.  There is a thread for family members somewhere. It's excellent. I'll see if I can find the link and post it. There  you can get the much needed support to see you through.

 

Again, thank you for helping your wife like you do. You are fairly rare. We appreciate you.

Flip

Here is the family support thread

 

http://www.benzobuddies.org/forum/index.php?topic=96812.0

Here is the thread on daily micro tapering

 

http://www.benzobuddies.org/forum/index.php?topic=97511.0

Mr. Snap,  In my post above I missed the fact that your wife was not doing a daily taper.  I assumed she was tapering this way already.  I agree with Flip that it would be a good move to switch to this method.  Some find that they just can not taper by stepping down, but when they switch to daily microtaper it makes all the difference.

Dear Snaps husband. I'm real sorry for your wife's suffering and subsequently your's as well. As far as what to do, you may have to go within and trust your own intuition on this. Because if you updose there is no gaurantee that it will give her relief. Sometimes an updose does nothing and a person just has more benzo to taper. If you decide to cold turkey at this point that seems worse to me. Viewing this situation objectively I would try and hold and see if that helps. If not, maybe find a taper rate that is safe enough but fast enough to get off this drug and heal. I hope she finds relief soon. Perhaps the docs will offer a med that may help with wds.

Mr snap - The first thing I would try if it was me  is a one time updose of 20%. This will temporarily raise her serum levels of V. This will tell you if your healing rate is anywhere near her present taper rate. If a one time updose does not help almost immediately you will know her brain is quite a ways behind her taper rate and current dose. If she does not get relief at least the same day going straight back to the dose she felt 80% good and 20% bearable would be my suggestion and opinion.The key here is to taper at a rate that the brain can safely heal at. This can be so different for everyone. As flip said a daily taper has really helped me get a handle on this. If the taper starts to go sideways the daily taper gives you time to fix it simply with a few minor adjustments. I am a strong believer that there is a stable dose of Valium for 99% of people and no I have no science or research to back this only anecdotal. The 1% or less that can't find a stable dose would know this fairly soon after taking Valium or they develop some reaction or aversion to the drug. The length of taper is irrelevant for me as the symptom based daily taper has kept my symptoms at a level that I can do almost everything I did before so I threw the calendar away a long time ago. I also believe that it is possible to heal as you taper so I plan to be nearly healed by the time I'm done. This is totally anecdotal too. I've never been to sure what the big hurry is all about.

etown