New Here with Major Challenge

Hi, I joined after only reading for the last two years.

 

I took Klonopin for 14 years for teeth grinding. Started at .75 and after many years was up to 1.5 mg when I began my taper. I tapered for 1 year with my doctor. I take .75 mg Trazadone to help with sleep. When we got to .5 mg Klonopin we crossed to 12 mg Valium.

 

I successfully tapered off Klonpin in March of last year. Have been slowly tapering Valium since then and still taking the Trazodone. Made it down to 1 mg but a few days later started to experience boaty dizziness, extreme gravitational pressure, inner vibration, and tinnitus. Doctor had me reinstate back to 1.5 a week later when symptoms got worse but it didn't seem to help that much. Tried corticosteroids but it didn't help. Doing vestibular therapy but it's slow going. Held out for a month with only minor improvement and and had to go on FMLA leave. I've been housebound, can only walk short distances, can't sleep flat or move my head much. Doctor reinstated me to 3 mg at that point. I've been there for a week.

 

I'm sad and lost about being back at 3 mg. I've read this board enough to know reinstatement isn't a good idea but I didn't know what else to do. I have ENT appointments but they couldn't get me in for 2 months so I felt I had to do it. Then of course they had an opening for a VNG yesterday and told me not to take the Valium or Trazodone for one night. I felt amazing the next day. I power walked many blocks. My head felt clear and I could move it any direction. I could lay flat. It was amazing!

 

But I don't know what to do now and neither does my doctor. She said I could take it as needed, but I'm not sure about that. I wanted to cold turkey but that's scary. I took the meds last night and am back to feeling boaty and off balance today. So here I am in need of support and advice. Thanks.

Hello shanabee - welcome to BenzoBuddies!

 

We're glad you joined us!  I'm sorry you've had such a difficult time with trying to taper off Valium after crossing over from Klonopin.  I feel confident the information and support you receive here will help you make a good plan for a cautious taper and that you'll find answers to your questions. Please tell us more about your taper - it will help us know how to help you.

 

I think your best bet is to stabilize for a while at your current dose of Valium before starting to taper again.  I understand that you'd like to be done with Valium once and for all but a cold turkey is simply not advisable.  As you probably know from BB already we generally suggest tapering with cuts of no more than 5-10% of your most recent dose every 14 days or longer but we encourage members to be flexible and to let their taper be guided by symptoms.  This can mean making even smaller cuts and holding longer between cuts.  This is the best way we know of to keep withdrawal symptoms to a minimum so you can function as well as possible during your taper. 

 

Please feel free to explore the site and post with your questions.  We encourage you to reach out for support.  I'll give you some links to help you get started.

 

We're very glad you're here - let us know how we can help you-

Brighterday 

 

Planning Your Withdrawal (Taper Plans)

 

Withdrawal Support (during your taper)

 

Success Stories

 

Colorado Consortium Benzodiazepine Deprescribing Guidance

 

Chapter 3 Ashton manual, list of symptoms

 

Add your history/signature

Hi, I joined after only reading for the last two years.

 

I took Klonopin for 14 years for teeth grinding. Started at .75 and after many years was up to 1.5 mg when I began my taper. I tapered for 1 year with my doctor. I take .75 mg Trazadone to help with sleep. When we got to .5 mg Klonopin we crossed to 12 mg Valium.

 

I successfully tapered off Klonpin in March of last year. Have been slowly tapering Valium since then and still taking the Trazodone. Made it down to 1 mg but a few days later started to experience boaty dizziness, extreme gravitational pressure, inner vibration, and tinnitus. Doctor had me reinstate back to 1.5 a week later when symptoms got worse but it didn't seem to help that much. Tried corticosteroids but it didn't help. Doing vestibular therapy but it's slow going. Held out for a month with only minor improvement and and had to go on FMLA leave. I've been housebound, can only walk short distances, can't sleep flat or move my head much. Doctor reinstated me to 3 mg at that point. I've been there for a week.

 

I'm sad and lost about being back at 3 mg. I've read this board enough to know reinstatement isn't a good idea but I didn't know what else to do. I have ENT appointments but they couldn't get me in for 2 months so I felt I had to do it. Then of course they had an opening for a VNG yesterday and told me not to take the Valium or Trazodone for one night. I felt amazing the next day. I power walked many blocks. My head felt clear and I could move it any direction. I could lay flat. It was amazing!

 

But I don't know what to do now and neither does my doctor. She said I could take it as needed, but I'm not sure about that. I wanted to cold turkey but that's scary. I took the meds last night and am back to feeling boaty and off balance today. So here I am in need of support and advice. Thanks.

 

Congrats on getting off the Klonopin. My hat goes off to you for going through two benzo tapers. I am so sorry that you are experiencing these side effects. I have had a bunch, so I feel for you.

 

Whatever you decide on how to proceed, please ensure you know the facts and risks. Outside of what medical professionals say. Some do not even know the dangers of what they prescribe. (A scary fact.) We have to do our thorough research and educate them sometimes. Thank goodness for crowd-sourced information and the power of reputable sources like the Benzodiazepine Information Coalition.

 

I understand wanting off, but benzos are the only substance other than alcohol where a cold turkey could cause loss of life. It could cause a seizure (s) as well as psychosis. If a person thinks their symptoms are bad in a taper, a CT could only worsen them if they live through it or don't end up in a psych ward where poly-medicine will further complicate their condition.

 

I haven't met or read about anyone on this forum for which CT ended well—even those who did a medical detox in a hospital or medical facility. Even people who are taking very small doses for short periods.

 

Benzos and benzo withdrawal defy logic.

 

At least you know the source of your symptoms. So many of us run from doctor to doctor, trying to fix the symptoms because they suck and we are in pain. Guard against incorrect diagnoses, as they can happen, and someone can be treated unnecessarily for a condition they don't have when it's just benzo withdrawal. The answer is time to heal.

 

Regarding tinnitus, don't listen to any ENT who tells you there is no cure or "you have tinnitus." They do not know benzo side effects and withdrawal. ENTs need to be more informed about this. If you get a hearing test which they will want you to do, it will likely come back perfect.

Thanks for the response, it means a lot. My doctor is having me do one more day without the Valium just to be sure that's what is causing the dizziness. I have such anxiety that I can talk myself into or out of anything she tells me to do. I hate myself for not being stronger, but I did try it. Mostly because I think she's a good doctor and she has done a lot of tapers but has never come across this before. I do feel better, for now. She thinks I can now just take the Valium as needed. Is the withdrawal really going to be that bad? I was only on 3 mg for four days. Won't this just be like jumping from the 1.5 I've been at for the last month?

 

I know I can't keep going on and off, but this dizziness is so hard. I'm terrified I'm going to lose my job. I already have so many medical bills from this dizziness and have been forced into FMLA leave. I so appreciate any thoughts you have.

Dizziness, inner vibrations, tinnitus and anxiety are all very common benzo withdrawal symptoms. ( Can you say more about extreme gravitational pressure?). It's miserable when you feel dizzy all the time.  I'm sorry you're suffering with it.  Like other withdrawal symptoms these are temporary and tend to fade away over time as you heal.

Please tell us more about your taper off Klonopin and then Valium.  How long did you taper Klonopin 1.5 mg to .5 mg?  When did you crossover from Klonopin to Valium?  How long did you taper from Valium 12mg to 1mg?  The reason I'm asking these questions is to explore whether your taper may have been too fast for you. 

 

 

 

I tapered off 1.5 mg Klonopin for from Feb 2021 to March 2022. I crossed over to 12 mg Valium to help with the last .5 mg, probably early in 2022 but I don't have the exact date. I've been tapering off Valium since April or May 2022, starting with 2 mg every 3-6 weeks depending on how I felt until we got down to 5 mg. At that point it was tapering by 1 mg every 3-5 weeks. When we got to 2 we did .5 cuts every 3-5 weeks. The last two cuts from 2 to 1.5 and then 1.5 to to 1 mg I did 3 weeks apart. I know that was probably too fast, my doctors agreed with that and had me reinstate to 1.5.

 

The non-spinning vertigo started a few days after the last cut, which I did on Dec 30. It feels like I'm on a boat in choppy water. Right after the last cut it was bad. Really bad, like my doctors sent me to the ER bad. They found nothing after blood tests, CT, and MRI. I'm on a long wait to see an ENT. I live in a small town in a small state and have to travel to see one. So, while we wait we've been trying things. I held out for almost 3 weeks without making many changes. The dizziness was very bad, had to take meclazine but got to the point where I could do without. During that time my symptoms were the boaty dizziness, a crushing weight on one side of my body, mostly ear, face, and head. An inner vibration that goes up and down my body. And terrible tinnitus. I could sit at my desk and type, watch TV, and eventually even walk about a block carefully. It seemed like it was getting the tiniest bit better, or maybe I was just learning to cope with it. I had a hearing test at the ENT during that time, only saw a PA, not the actual doctor. They suggested a round of steroids. They were terrible and made me feel like I could do more than I should.

 

Taking the stairs or loading the dishwasher ruins me for hours to a day. When I told my doctors that they had me reinstate to 4 mg for two days. It felt like too much so they had me go to 3 mg for two days then I had to stop for the VNG test. The day I stopped was wonderful, I was mostly normal again but the doctors had me go back on the next day and it was awful. They couldn't decide if the increase or decrease made me feel awful so they had me stop the Valium again. It feels good again but not as good as the first day I didn't take it.

 

So I was at:

1 mg for 2 weeks

1.5 mg for 1.5 weeks

4 mg for 2 days

3 mg for 4 days

Zero for 1 day

3 mg for 1 day

Zero for 1 day

 

Where do I go from here? I know the up and down is dangerous and stupid from reading here but I just didn't know what to do at the time so I did what they asked. They are now saying hold and take as needed. I'm frustrated because their advice changes every time I see them. They've said this could be MDDS, PPPD, or the Valium. Or anything. They don't know and I don't know that I can trust them after this. Thank you for helping me.

 

shanabee - I've asked a BB team member to step in to give you some help.

Hello, shanabee. Brighterday asked me to take a look at your case.

 

I agree with you that your taper from 5mg was probably too fast.  The percent reductions you made were 20%, then 25%, then 33%, then 25%, then back to 33%.  As you know our general rule of thumb is to keep reductions in the range of 5-10%.

 

The fact that you felt better the day after you abstained from diazepam and trazodone for the VNG but not as well the day after you abstained from only diazepam (but not trazodone) may be an important clue.

 

Diazepam has a long half-life so it typically takes longer than a day for a reduction in dose to ‘register.’  In contrast, trazodone has a relatively short half-life of approximately 5 to 13 hours. This means that every 5 to 13 hours, the level in your blood will drop by 50 percent.  So a reduction in dose registers fairly rapidly.

 

According to drugs.com, common side effects of trazodone include dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position.  There have also been post-marketing reports of ataxia, extrapyramidal symptoms, and tardive dyskinesia.

 

In addition to the above, there is a moderate interaction between diazepam and trazodone.  This means the central nervous system effects of these two drugs may be additively or synergistically increased. Sedation and impairment of psychomotor skills, attention, judgment, and may increase. 

 

Working hypotheses for your consideration are (1) a too rapid taper from 5mg to 1mg of diazepam destabilized your nervous system (it is now highly sensitized) and (2) some of the symptoms you are experiencing may be due to trazodone and/or the interaction between trazodone and diazepam.

 

Lastly, I wonder if the steroid you were prescribed might have played a role. When exactly did you take the steroid in relation to the diazepam dosing/tapering timeline you have shared with us?  What was the name of the steroid? What dosage were you prescribed?  How many days did you take it?

 

Thank you for your reply. I did do a lot at once. I took the Medrol steroid six pack in between reinstating to 1.5 mg and then going up to 3 to 4 mg. I can't stress how bad the dizziness is though. I held out while I could but then I just had to start trying things.

 

I wish I had kept better track of my cuts, but I can't remember when I was at 5 mg. That had to be months ago.

 

Right now I'm at three days off the Valium but still taking trazodone. I assume this is a bad idea but honestly the dizziness is 75% better right now. I really wish I knew what to do which is why I'm here looking for help. How long do I have to reinstate? What dose should I go back to?

 

Thank you for everything.

You’re welcome.  It sounds like the main trigger for your symptoms was the too rapid taper from the last few milligrams of diazepam. The interaction between diazepam and trazodone may also be a factor.

 

I will defer to other members to answer your questions about reinstatement and dosing.

 

In closing, I’ll share three pieces of information.

 

(1) According to drugs.com, there is a minor interaction between diazepam and Medrol.  The Medrol may decrease the plasma concentration of the diazepam. 

 

(2) Just in case you aren’t already aware of it, diazepam has a very long-half life.  Why is this important?  It may take a while for reductions in dose (or cessation of the drug) to fully ‘register.’

 

Per StatPearls, the terminal elimination half-life of diazepam is 48 hours and the terminal elimination half-life of its major active metabolite (N-desmethyldiazepam) is up to 100 hours.  This means every 48 hours the level of diazepam drops by 50% and every 100 hours the level of its metabolite drops by 50% after taking a single dose.

 

According to the Drug Half Life / Clearance Calculator linked below, it would take approximately 10 days to eliminate the diazepam and 21 days to eliminate the primary active metabolite N-desmethyldiazepam after taking a single dose (taking diazepam on a daily basis increases time to elimination).

 

(3) If/when you decide to discontinue the trazodone, be sure to taper it rather than quit cold turkey.  The good folks at SurvivingAntidepressants.org can provide information and support if needed (see link below).

 

Links:

Diazepam - StatPearls - NCBI Bookshelf

https://www.ncbi.nlm.nih.gov/books/NBK537022/

 

Drug Half-life Explained: Calculator, Variables & Examples

https://www.drugs.com/article/drug-half-life.html

 

Tips for tapering off trazodone / Desyrel

https://www.survivingantidepressants.org/topic/2883-tips-for-tapering-off-trazodone-desyrel/

Thank you for your reply. I did do a lot at once. I took the Medrol steroid six pack in between reinstating to 1.5 mg and then going up to 3 to 4 mg. I can't stress how bad the dizziness is though. I held out while I could but then I just had to start trying things.

 

I wish I had kept better track of my cuts, but I can't remember when I was at 5 mg. That had to be months ago.

 

Right now I'm at three days off the Valium but still taking trazodone. I assume this is a bad idea but honestly the dizziness is 75% better right now. I really wish I knew what to do which is why I'm here looking for help. How long do I have to reinstate? What dose should I go back to?

 

Thank you for everything.

 

At 3 days off Valium you're within a reasonable timeframe to reinstate.  The question of whether to reinstate is difficult.  The reason for you to reinstate would be because you tapered off Valium to rapidly.  The purpose would be to bring your symptoms to a state of stability so you're able to complete a slow careful taper. Then the big question is: at what dose  should you reinstate?  What was the last dose you were stable at?  Was it 5mg?

Here's a link to a thread about reinstatement: To reinstate…or not to reinstate?

Thanks, everyone. You’ve given me a lot to think about. I’m talking with my doctor again today. You’re a wonderful resource !

Please let us know how your appointment goes.