Deciding Whether to Reinstate Support Group (vertigo and tinnitus included)

It occurs to me that there are a number of people who come to forum who have either recently rapidly tapered off or gone through a detox off benzodiazepenes and feel very ill, often have had multiple trips to the ER, and wonder whether they should remain off of the benzo or begin again with a slower taper.  I start this thread with the caveat that all decisions regarding coming off of and reinstating benzodiazepenes should be made with one's physicians.  However, it can not be ignored, that some come to a support forum like this one, who have been given less than stellar advice by their doctor or other health care professional, regarding "rapid" taper, c/t or detox off of benzodiazepenes. 

 

First, let me be clear that I am not a doctor nor should anything I post be construed as medical "advice".  Also, there may be adequate or justifiable medical reasons why a doctor may have advised a rapid detox, such as life threatening crises, suicidal ideation or self harm.  The paradox is that often a rapid detox can lead to the very escalation of some of the issues just mentioned.  I can only provide an account of my own experience with medical doctors which included two internists, an uninformed ER physician, ENT (ear nose and throat specialist) otoneurologist (medical doctor specializing in the inner ear, hearing and balance issues of the brain) along with a vestibular therapist who specializes in balance and inner ear disorders and a psychiatrist.

 

  I came to forum after a cold turkey off of 3 weeks of valium use back in 2008 (approximate daily dose was 5 or 10mg, average of 7mg just for three weeks).  I was prescribed the valium for anticipated jet lag and motion sickness on a summer trip that included lengthy flights and a cruise.  My internist did not advise me to taper off slowly when I returned and I later learned that 2 or 2.5mg would have been a more appropriate dose for that travel.  In any case, I stopped taking the valium upon my return and about 2.5 weeks later, I was extremely agitated, not sleeping and developed vertigo (extreme dizziness) which resulted in my one and only visit to the ER.  The ER  physician informed me that it could not be related to the valium use since three weeks had passed.  I later learned that it can take three or four weeks for valium to process out of the body and that most likely was in fact the abrupt cessation of the valium that caused the vertigo.

 

My next stop was to my ENT who confirmed that I had benign positional vertigo in one ear.  I was referred to an audiologist and got an audiogram to rule out other issues.  I declined the auditory CT scan since I was pretty certain I did not have a tumor and that this was medication related (others may be better off getting the CT scan).  The ENT also referred me to an otoneurologist.  The first thing he told me was that the original internist had overprescribed by four to five times (10mg, seriously?), that 2mg would have been sufficient to deal with the jet lag and motion sickness for which I asked for the valium.  Secondly, the otoneurologist informed me, much to my surprise and validation, THAT HE TAPERS ALL HIS PATIENTS OFF OF AS "LOW A DOSE" AS 2MG VALIUM OVER SEVERAL MONTHS TO AVOID PROBLEMS SUCH AS VERTIGO AND TINNITUS (EAR RINGING).  Well, that was certainly a wake up call. 

 

I decided to reinstate, even though the neurologist informed me that it was not certain that the vertigo would go away with reinstatement, that it was possible that the vertigo could have been caused by something else, although unlikely.  Within four or five days of reinstatement, the vertigo was gone .  That may not happen to everyone, but I assume it is possible. I only reinstated to 5mg which was a couple milligrams shy of the last average dose I had been taking.  I had misread a couple of things on the internet and within two weeks cut .5mg to 4.5mg valium two weeks later and of course began to feel very anxious again, although the vertigo never came back.  I went to a new internist who suggested that I taper off the remaining valium over 30 days while adding Lexapro, since he believed I had high anxiety.  Of course he was right about the anxiety.  I had just cut too much too quickly and did not reinstate to high enough of a dose to eliminate the anxiety and insomnia.  I informed him that I was going to taper much more slowly off of the valium and that I would only consider an anti anxiety medication AFTER the valium was out of my system. I never did take any other medication, choosing instead to read some books on anxiety and ACT (Acceptance and Commitment Therapy) for stress management.

 

I really do not understand why there is so much misinformation and ignorance being propagated about benzo tapering and replacement with other medications.  In my view, anxiety and rebound anxiety is a natural result of tapering and so adding another medication to cover it up is similar to the first mistake many of  us made in taking a benzo in the first place! I do understand that there are some who have reached a degree or level of anxiety or depression where they can not function or have thoughts of self harm.  In those cases, I would agree that it might be worth considering additional medication or even hospitalization (although I would disagree with the notion that rapid detox would be very helpful, short of a medical allergy to medication or other very serious and justifiable documented reason).  In my case, it was clear what was ahead.  A slow taper to avoid a return of vertigo and I also had to work on better stress management and learn how to cope with anxiety and life's problems better and without a pill.  Another situation that influenced my decision to take the valium in the first place was that my elderly father had started chemotherapy for cancer and was going on that summer trip with us, presenting additional stress and challenges. No point in beating oneself up about why one took the benzo in the first place.  Learn and apply what is learned from one's mistakes.

 

I ended up taking about 9 months to taper off the valium but I first reinstated to about 7mg, the original amount I had gone off of after that summer trip.  I elected to switch to liquid valium when I got down to 2mg and took 3-4 months to finish that up, something that was not absolutely necessary but my father was sick again and I thought it would be better to keep it slow and steady as far as the taper went.  Around 2mg, I went to a psychiatrist to get the liquid valium prescription.  The otoneurologist was not familiar with it so I went for two consults and that was enough to finish my taper.

 

Some of what I learned in subsequent months on forum and researching is the following:

 

Reinstatement if done within the first few weeks of a c/t or rapid detox can be helpful for some and possibly avoid ear problems

Reinstatement may not be best for everyone, particularly if one has had multiple on and off benzo experiences (kindling)

Reinstatement may be more helpful for some rather than trying to replace benzos with other medications

Some may benefit from taking an anti depressant or other prescribed medication, as per the Ashton Manual.

C/t or rapid detox may work for some, but the majority seem to do better with a slower taper

Some physicians by their own admission are not schooled in the proper or appropriate taper time off benzodiazepenes

Some psychiatrists are in the business of prescribing other medications as their philosophy and work practice (for better or worse)

Not all doctors are misinformed or ignorant, but one must be persistent in finding the right team to support you

Don't believe what all doctors advise.  Go with your gut if something doesn't feel right and seek out second and third opinions.

Be aware of the dangers to one's hearing and balance when contemplating a c/t or rapid detox. If one already has done so, it may be worth consulting with a neurologist about reinstatement.

Be aware that many doctors are misinformed about what constitutes a "low dose" or "safe dose" to rapidly taper from.  One can get tinnitus or vertigo from tapering even 2mg of valium if done too quickly. 

Be aware that rapid taper and replacement with other medications may not be an appropriate solution.  An appropriate taper, at least from my understanding and experience, is a minimum of several months, possibly and in all probability, longer.

If one took a benzo for anxiety, depression, insomnia or some other reason, be prepared when one goes off it, whether quickly or slow taper,  to learn new coping strategies.  Pills are not a panacea.

Hopefully this post will help some.  Always check with your own physician about reinstatement and medical decisions.

 

Some who have been off of a benzo for several months or longer may find that they are not healing as quickly as they anticipated. Some may contemplate whether reinstatement might also be worth considering for them.  Many on forum would offer a resounding "no" to this.  I think it is a little more complicated.  First, I would say that one often does not realize that it can be quite normal for one to struggle with some strong s/x in the first six months or even a year off of a benzo. If one is functioning and not having thoughts of self harm, my view is that reinstatement may not be ideal in this circumstance.  I experienced some s/x for over a year, although that did not mean that I was racked with heavy side effects the entire first year.  By six months, about 75 to 80% of issues were gone, although some waves returned at 9 months and I was prepared for it.  That being said, for some, if it is more than a month after c/t or rapid detox and one feels unable to function, extremely depressed or even suicidal, one might wish to consider a consult with one's physician as to the appropriateness of a reinstatement or adding an anti depressant.  Each case is unique and there are no wrong or right answers for all. Again, doctors are not the enemy.  It's a matter of finding the right one!

 

 

Perhaps others may have more to add.  I welcome your stories and experiences so that others may learn something that could be helpful or worth asking one's doctor if it is right for you.

 

Vertigo (no more!)

Has anybody reinstated recently or thinking about reinstatement currently?

 

V

Would this include an updose or is this the right group to ask?  It has been suggested to updose my valium as I did a too rapid klonopin taper and am having severe withdrawals, burning skin, rash, fizzy acid in mouth, 15 lb weight loss ad infinitum.  it was suggested as I just did a temazepam/diazepam c/o completed 2/14 that I might want to updose to 25 mg of valium at this point and then taper from there.  That would be a 10mg increase from where I am now. 

Overcomer

Would this include an updose or is this the right group to ask?  It has been suggested to updose my valium as I did a too rapid klonopin taper and am having severe withdrawals, burning skin, rash, fizzy acid in mouth, 15 lb weight loss ad infinitum.  it was suggested as I just did a temazepam/diazepam c/o completed 2/14 that I might want to updose to 25 mg of valium at this point and then taper from there.  That would be a 10mg increase from where I am now. 

Overcomer

 

Hey Overcomer.  Not many folks read this support thread.  It might be better to post in another section of forum like in cold turkey section or maybe tapering section or cross over to valium support group might be helpful as well.  I don't know enough about your history to advise you on updosing.  If your taper was very rapid and it is within a few weeks of going too quickly, updosing could be helpful for some, others find that it may not be as helpful, particularly if you have been on and off benzos multiple times (kindling...).  If this is your first taper and you went rapidly, it might be something to consider with your physician, can't advise if you've been on and off multiple times.  In any case, this is for support, not really to "advise".  Do you have a supportive doctor?

 

Vertigo

Vertigo:  Hopefully we can get this group going.  I am not to sure I liked the advice I received from the Valium Support Group.  Yes, I have kindled over the last 10 years a few times.  So that being the case, I would think I have to suck it up and just taper down now from the 15mg V that I c/od to from temazepam.  I have been on the 15mg V for 3 weeks now, so I am thinking of dropping .5 mg V on Friday.  Keep fingers crossed!

Overcomer

Hi it's Laelani,

 

I've had such a rough go of things. I need help please. I reinstated twice in the past month. 1st on jan 30th for 2 weeks. Went to detox again only to come home & start a horrible withdrawal,, which lead me back to reinstating Valium a week later. Only to be put in the psych ward for feeling extremely suicidal, where they took me off the Valium in a weeks time. It's been 7 days today since my last dose of Valium that I was on for a week. I know I have a long way to go till I feel the full effects of my withdrawal & I'm scared. I don't even know if reinstating at this point would work. I'm lost, scared & confused. My doc seems to think I would be fine taking Valium again. But I don't know.

 

I don't have enough time clean to give you any good advice, Laelani.  I am happy you are OK.  Everyone was very worried about you.

Hi it's Laelani,

 

I've had such a rough go of things. I need help please. I reinstated twice in the past month. 1st on jan 30th for 2 weeks. Went to detox again only to come home & start a horrible withdrawal,, which lead me back to reinstating Valium a week later. Only to be put in the psych ward for feeling extremely suicidal, where they took me off the Valium in a weeks time. It's been 7 days today since my last dose of Valium that I was on for a week. I know I have a long way to go till I feel the full effects of my withdrawal & I'm scared. I don't even know if reinstating at this point would work. I'm lost, scared & confused. My doc seems to think I would be fine taking Valium again. But I don't know.

 

Hi Laelani. glad youre ok. Hard to say. If I were you and the doctor thought it might be helpful, I would likely reinstate but only if I was committed to seeing it through for some period of months. You're between a rock snd hard place. Both scenarios likely to be challenging for a month or more. I was glad I did but it still had some downturns.

 

V

Thank you for your reply vertigo. I'm not sure what to do. I had a diazepam blood level test done on Tuesday & my levels were at 0 and the metabolites were at .02. So mostly everything is out of my system by now. I am experiencing agitation, restlessness & anxiety. Not sure how bad things will get for me, & I'm not sure how to proceed & decide if a reinstatement would help at this point.

Thank you for your reply vertigo. I'm not sure what to do. I had a diazepam blood level test done on Tuesday & my levels were at 0 and the metabolizes were at .02. So mostly everything is out of my system by now. I am experiencing agitation, restlessness & anxiety. Not sure how bad things will get for me, & I'm not sure how to proceed & decide if a reinstatement would help at this point.

 

Glad you are okay Laelani! I feel the same as you have, I've wanted to c/t these meds/go to detox so many times but I know I'll most likely end back on them once I freak out. I can barely go all day while I wait for my one nightly dose. You are so strong you've been through the rehab ringer like I have but worse. There's gotta be an answer for you!

Time for a change,

 

Thank you for your concern, I appreciate it so much.

Yes I have been through the rehab ringer. If I survive this anyone can.  Not sure that there is an answer for me unfortunately...may just have to endure what may come. Hoping it won't be as horrible

and long as some say it is.

Time for a change,

 

Thank you for your concern, I appreciate it so much.

Yes I have been through the rehab ringer. If I survive this anyone can.  Not sure that there is an answer for me unfortunately...may just have to endure what may come. Hoping it won't be as horrible

and long as some say it is.

 

Surviving is an answer! It sucks, I know I hate this crap too, I'm tolerant to the meds too I hope your recovery doesn't take too long!

Laelani,

 

I'm so glad to hear you're OK, at least relatively.  I'm praying that you recovery goes well and you get better soon.  Keep posting to let us know how you're doing. 

Thank you for your reply vertigo. I'm not sure what to do. I had a diazepam blood level test done on Tuesday & my levels were at 0 and the metabolites were at .02. So mostly everything is out of my system by now. I am experiencing agitation, restlessness & anxiety. Not sure how bad things will get for me, & I'm not sure how to proceed & decide if a reinstatement would help at this point.

 

Whatever way you decide, it is important to be kind and gentle with yourself. Benzos are a tough adversary and many before you, including me, made "mistakes" along the way.  It is not helpful to beat oneself up for them.  There is still so much misunderstood and unknown about benzos, including many doctors who admit they don't fully know how to properly taper somebody off.  Many do heal despite situations even more challenging than yours.  So keep the faith and do what you feel is best for you and your family.  Hopefully you have a doctor you can trust now and will help make whatever decision you feel is best.

 

Vertigo

Hi there,

 

I am so happy to see this site about the question of reinstating or not.  I am trying to decide what to do next:  stick it out or try to reinstate with a doctor I will meet with on Tuesday.

 

I believe my withdrawal from clonazepam was too fast and now at six weeks without medicine, I have lost all of my body hair and some on my head so I think I am having some severe issues that I may not be able to get past in the real world.  I don't know if I am making sense.

 

My ears are in pain along with all the other symptoms listed (anxiety, insomnia, nausea, dizziness, rapid obvious heart rate, hot/cold, burning sensations, sensitivity to light and noise) - add in the potential of having no hair and it just doesn't seem doable.

 

My problem is that it will be a new doctor I see on Tuesday and I don't know how much he will be able to help me - all based on his experience and knowledge with this.

 

I know that one is advised against reinstating after being off 2-3 weeks but I think my symptoms may be too sever to function and my hope is to possibly reinstate and get support systems in place during a very long tapering (at least a year?).

 

If anyone has done this or knows anyone who has, please let me know.

 

One more question:  besides the few doctors listed on these sites - does anyone know of any good docs ?

From what I have been reading from posters in these groups is that a common w/d symptom from K is burning skin.  I began having severe acid reflux and burning skin after I began my first K taper in 2012.  When the K was reinstated those s/x did not go away.  I began a new taper  from K 2/13, random, not Ashton, just cutting .25 mg from one of the 4 doses every 2-4 weeks.  The s/xs got worse with each taper.  Once I was completely w/d from all 3 day time doses the burning skin and acid got really bad, this would have been 8/13, plus broke out in a rash, and became sun sensitive amongst a bunch of other s/xs.   

 

My daughters keep wanting to put me in a hospital to detox the V rather than the taper plan that my husband (caretaker) and I are doing via a slowed up Ashton method.  I just want to not get more s/xs tapering, don't know if I could survive.  I try to explain to them the problems of ct w/d and that I could get worse.  There are some on BB that are bedridden.  At least I can still function, although not normally, but I am walking, talking, seeing (blurry sometimes) hearing (amplified and tinnitus) 15 lb weight loss,  but these things will heal, in time. I wish it would be in fast motion, but it will be in God's time.

 

I guess, what I am getting at is, that in one group I was advised to updose to 25mg of V and then taper because of the w/d s/xs that I am experiencing at present.  This would add a lot of extra time to my taper which is presently at 14.5 mg V at night as of last night, yippee skippee taper began .  So I would be taking a big chance by updosing  to 25 mg V.  There are so many variables in our w/ds that no one can know for sure what would happen if I updosed.  Would my s/xs disappear, and then just be minimal during a slow 25 mg from V.  And can I get a pdoc on board with that and my husband?  I have been off K for 4 months.

 

Hopefully this makes sense.  Wish things were cut and dry with the benzos w/d but it isn't.

 

Overcomer  :smitten: :smitten:

From what I have been reading from posters in these groups is that a common w/d symptom from K is burning skin.  I began having severe acid reflux and burning skin after I began my first K taper in 2012. When the K was reinstated those s/x did not go away.  I began a new taper  from K 2/13, random, not Ashton, just cutting .25 mg from one of the 4 doses every 2-4 weeks.  The s/xs got worse with each taper.  Once I was completely w/d from all 3 day time doses the burning skin and acid got really bad, this would have been 8/13, plus broke out in a rash, and became sun sensitive amongst a bunch of other s/xs.   

 

My daughters keep wanting to put me in a hospital to detox the V rather than the taper plan that my husband (caretaker) and I are doing via a slowed up Ashton method.  I just want to not get more s/xs tapering, don't know if I could survive.  I try to explain to them the problems of ct w/d and that I could get worse.  There are some on BB that are bedridden.  At least I can still function, although not normally, but I am walking, talking, seeing (blurry sometimes) hearing (amplified and tinnitus) 15 lb weight loss,  but these things will heal, in time. I wish it would be in fast motion, but it will be in God's time.

 

I guess, what I am getting at is, that in one group I was advised to updose to 25mg of V and then taper because of the w/d s/xs that I am experiencing at present.  This would add a lot of extra time to my taper which is presently at 14.5 mg V at night as of last night, yippee skippee taper began .  So I would be taking a big chance by updosing  to 25 mg V.  There are so many variables in our w/ds that no one can know for sure what would happen if I updosed.  Would my s/xs disappear, and then just be minimal during a slow 25 mg from V.  And can I get a pdoc on board with that and my husband?  I have been off K for 4 months.

 

Hopefully this makes sense.  Wish things were cut and dry with the benzos w/d but it isn't.

 

Overcomer  :smitten: :smitten:

 

I find it interesting that reinstates do not take all S/X away.  I think that the Glutamate temporarily damages some nerves.  I fear withdrawal is more complex than we think.

Birdman:  I don't totally understand this glutamate thing.  Why is it bad?  For some reason my benzo brain is not absorbing the reason.  Maybe someone could explain it to me in layman's terms.

 

Overcomer  :smitten:

No idea whether to reinstate or not, so scared after all I just went through in rehab getting c/t'ed, literally hell on earth. My body is completely numb and twitchy, I feel so weird like I am going to die all the time. I don't want to be a slave to the pills anymore but I feel so weird and just want this feeling to go away.