Help w/ Ativan taper advice & math, scared

[[ho...]]

Background: Sorry it's so long. Pls at least read paragraph 1, 2, 6 and on.

I can't figure out how to post in the history section and I have a rare health condition that makes it impossible to concentrate at times (Functional Neurological DisorderFND-& Psychogenic Non-epileptic Seizures -PNES- throughout the whole day every day) My brain basically shuts down under stress so I'm unable to think and every little thing stresses me since the PNES started. Idk if the Ativan is also affecting cognitive dysfunction.

In 2016, I had a very bad reaction to stopping SSRI sertraline after only 2 wks. (Week 1 25 mg Week 2 50 mg then cold turkey d/t insomnia, nausea, dry heaving, throwing up portions of every meal I ate) Day after CT, I ended up in ER w/ worst nausea of my life in head/brain, dilated pupils, hyperreflexia, & accused of being on illegal drugs which I've never done. Mention of possible serotonin syndrome but never confirmed or made clear to me. Diagnosed w/ SSRI discontinuation 'syndrome' (withdrawal) & given Ativan IV. Helped the nausea for 1 day & walls looked wavy. After that, hell started. Extreme terror & feeling of everything being sinister, couldn't watch movies, uncontrollable crying at every small thing, uncontrollable screaming rage w/ no buildup that scared myself, day of visual perception distortions, moment of paranoia, dizzy, putrid smell in nose making nausea worse & extreme hypersensitivity to smells, feeling like the medicine changed who I am/identity (depersonalization), extreme cloudy derealization. Brain zaps & burning in feet. Squeezing head pressure. Windows & waves. Worst of it (neuro-emotions & terror) lasted about 1 month I think, brain blanked some of it out bc it was the most traumatizing thing I'd ever felt. Also took Ativan 0.25 or 0.5 mg approx 4 times during this time. Did not notice it help. After that, years of chronic nausea, dizziness, derealization & total emotional numbness/anhedonia/inability to care about anything or feel joy. Physical numbness as well.

2021 - Collapse from 2.5 years of extreme stress live-in caregiving situation/sleep deprivation/exhaustion after severe endometriosis pain flare. Pain had become chronic during this time. Unable to walk & diagnosed with FND. Worked up to using cane for short spurts in physical therapy. Still experience nausea, dizziness derealization, head pressure/migraines at lesser levels. Worse around time of menstrual cycle. Caught Covid, severe flu & high fever causing vocal cord dysfunction, bacterial infections. Run down & severely sick for a month requiring antibiotics every time I catch something. Surgery reduced highest pain level & temporarily exacerbated nausea & migraine post-op

End of 2023 Trial Mirena IUD (insert under anesthesia). Severe pre-surgery level pain for 2 weeks. Feels like IUD increases my anxiety levels. Burning sensation in back. Internal overheating feeling. Get extremely sick with worst sore throat causing ear infection & temporary hearing loss, fever, sweats, hot & cold chills. Rxed doxycycline and refused to give me an alternative antibiotic so I took it (had heard bad things about its effects) Felt like I had Covid but no one did PCR. Bad panic attack day after finishing course. Removed IUD under anesthesia a few days later. Took one opioid. Exacerbated nausea & migraine. Dry heaving & vomiting. Became emotional & started uncontrollably crying at every little thing including in public. Lost appetite/hunger sensation. Fear of eating because dry heaving & vomiting didn't stop. Wake up in panic. Days w/ extreme nausea.

Dr & my 'caregiver' suggest/pressure to take Ativan for panic & say it will stop the vomiting. Terrified to start bc I don't want the eventual withdrawal. Take 0.25 mg & 0.5 mg a few times intermittently. Have first PNES episode.

Taken to ER. Dr there gives me 2 mg Ativan so I'll be still for MRI. Feel weird, drugged, & out of it. Don't like the feeling & it isn't calm/peaceful. Tells me Ativan dose is too low, & stop taking PRN, take everyday. Prescribes 1 mg Ativan 12 hours apart. Panic levels reach heights I've never experienced. Can't stop bouncing leg. Waves of panic in public & severe sensory overload especially around crowds & loud music. Have become agoraphobic. Have PNES symptoms throughout the day everyday (involuntary vocalizations/yelling, hyperventilating, tremors, abnormal movements, intense internal overheating burning up feeling, disorientation, sobbing & coughing until vomiting.) Nausea feels worse since starting Ativan and weird smell in nose/hypersensitivity to smells much worse. Feels like years of progress waiting for SSRI WD symptoms to gradually subside have been reversed & something triggered a return/worsening of some of them.

 

Ativan Tapering Schedule Questions

Took 0.25mg & 0.5 mg a few times as needed (every 2nd or 3rd day)

Approx 1 wk after this the ER gave me 2mg in hospital & prescribed 1mg Ativan twice a day

Originally I took it at 10A & 10P but at some point changed it to 9A & 9P

I've been taking 1 mg Ativan twice a day for approx 3 months & 2 weeks 

 

This is the schedule my Dr is allowing me to taper with liquid Ativan where 2 mg = 1 mL

 

Week #  AM dose (mL) PM dose (mL)

Wk 1 & 2 AM 0.5 PM 0.4

Wk 3 & 4 AM 0.4 PM 0.4

Wk 5 & 6 AM 0.4 PM 0.3

Wk 7 & 8 AM 0.3 PM 0.3

Wk 9 & 10 AM 0.3 PM 0.3

Wk 11 & 12 AM 0.2 PM 0.2

Wk 13 & 14 AM 0.2 PM 0.1

Wk 15 & 16 AM 0.1 PM 0.1

Wk 17 & 18 AM 0.1 PM 0

Wk 19 Stop

 

My questions are: Is this too fast of a taper?

(I was hypersensitive to medication even before SSRI withdrawal and some other people in my family genetically related to me are also highly sensitive to chemicals, medicines, etc. I asked if I could go down by 5 percent the first week and my Dr said ok initially but then this is what they wrote out. I think it's a 10 percent taper but I haven't been able to focus long enough to do math since the PNES started.)

Also, the Benzo Coalition said if you're not doing the Valium crossover, that Ativan has a short half-life and is better to dose 4 or 5 times a day while tapering. Is this true?

& Is it better to go down a tiny bit daily vs a fixed percentage biweekly?

And is anyone able to convert the mL schedule into mg for me? I'm unable to do math since the PNES started & already had a learning disability before that.

And how many mL AM & PM would be a 5% taper the first week? Is there a specific formula that makes it easier to calculate? I also don't understand how much each line on the syringe represents (for ex the lines between 0.5 & 0.6)

Thanks for your help, I'm absolutely terrified of going through withdrawal again and also of the possibility of akathisia.

 

Edited September 29 by [ho...]
I forgot to say serotonin syndrome symptoms were mentioned when I went to the ER for SSRI discontinuation syndrome/withdrawal

[[Bu...]]

Hello @[ho...],

Welcome to Benzobuddie.

Gosh, you've got a lot going on!  I am so sorry for everything that you've been through and are still dealing with.  A lot of this is way out of my league, but I wanted to get your account going so that folks who are more familiar with the things you're dealing with can chime in.  

I will say, though, that I think perhaps Ativan just doesn't agree with you.  I think it's good that you are tapering off.  I can also answer one question for you, we generally recommend that you taper 5-10% of your current dose every 2-3 weeks, with your symptoms being your guide.  

I'm glad you found us and we'll do our best to help you with this.

[[ho...]]

@[Bu...]Thank you, I don't think anyone will be familiar with FND or PNES since they're rare conditions that most people never heard of. I didn't know they existed until I was diagnosed.

Would you be able to tell me what 5% of my current dose would be based on the 2mg/mL solution? Like, how many mL to take if I stay on the twice a day schedule? I mostly need help with the math and wanted to start out slower than 10 % My caregiver & Dr aren't letting my symptoms be my guide and I'm too confused to be able to figure it out myself even though I tried.

Edited September 29 by [ho...]
Tag, spelling

[[El...]]

@[ho...] Welcome to BB.  Wow, you do have a lot going on!

Perhaps I can help with your math question.  A 5% reduction from your present 2 mg is 1.9 mg.  Since your liquid is 2 mg/ml, this would translate into 0.95 ml total daily dose.  You could take 0.48 ml  for one dose and 0.47 ml for your second dose.

As far as use of your syringe...is your syringe 1 ml syringe?  Are there 4 gradations, for example, between the .5 and the .6?  If you have a 1 ml syringe with 4 gradations between the .5 and .6, the first one would be 0.52 ml, the second 0.54 ml, the third 0.56 ml, the fourth 0.58 ml.

* If your syringe is a 1 ml syringe as described, you would not be able to measure 0.47 ml.  You could purchase a 0.5 syringe or take a slightly smaller reduction by taking 0.48 ml each dose, or a slightly larger reduction by taking 0.48 ml and 0.46 ml doses.

Most people tapering from Ativan dose at least 2 times per day...many dose 3 times per day...some dose 4 times per day.  How are you feeling between your doses?

Whether you take very small daily reductions (with holds every so often) or a larger reduction, followed by a longer hold depends on which you are able best able to tolerate.  Many initially start with the larger reduction, followed by a period of holding, to see how they feel before making that decision.

Let us know if you have further questions!

[[ho...]]

@[El...] Thank you so much. I can't check the syringe right now but will try later. One other question - I thought I read it was easier to start with the smaller reduction (for example 5 instead of 10 percent) because going back up can sometimes cause more problems. And I also saw that going down too fast is more likely to cause long-term problems. Is it different because I shouldn't be tapering longer than I was taking it for?

I'm not sure I'll be able to gauge accurately how I feel bc the Ativan never made me feel better. I have had panic between doses since starting, I think much worse after increasing.

I haven't started the taper yet because I was scared to jump as high as 10 percent and wanted to find out how much 5 percent is.

Would the jump from a 5% taper to 0.4 AM and PM listed on Week 3&4 be more than 10%?

Also could the change from a one-time 2mg dose at the ER to daily 1 mg dose AM & PM starting the next day have already caused WD symptoms?

And could you tell me what the specific algebra formula is for figuring out dose reductions? I was able to do a little math last night just to check this schedule and figured out a second 10% reduction would be 1.62 but it was very confusing. And the Dr's schedule would be 1.6 which would be slightly more than 10% I think, so isn't his schedule increasing slightly more than 10% and becoming a bigger jump each time?

(For the formula, I know how to figure out percentage reductions in mg but I don't know how to convert it into what the amount would be in mL. )

Is there any chance I won't feel WD symptoms? I'm so scared, I only had bad panic attacks 5 or 6 times total before starting the Ativan and I don't cope with them well.

Edited Sunday at 11:00 by [ho...]
Tag, math formula question

[[El...]]

@[ho...] You have excellent questions! While a lot of your history is beyond my knowledge, I will try to answer (in order) those questions that I am able.

I usually suggest starting a taper by making an initial modest reduction. Indeed, if you go too fast with an initial reaction, it may take an “extended” amount of time to recover. You can always speed up your taper. But recovering from “going too fast” is sometimes problematic. A goal would be to only make reductions that are “manageable” so that you can avoid any updosing. The first few reductions may give you some idea of what is “manageable” for you.

As to the length of time for taper given your length of use…you have some past history of using Ativan as well as an SSRI. It is unclear whether this has caused any dependence (as dependence can occur even after very brief use) or (perhaps?) kindling. It also appears that you might not tolerate Ativan well. So, with those 2 factors, it is hard to determine a rate of your taper or how long your taper may last. I would only recommend that you taper at a rate that is “comfortable” to you. You are the only person that can determine that comfort zone.

Ativan has a half-life of about 12 hours. That is why it often recommended to dose 2, 3, or 4 times a day so that blood serum levels remain constant. Any time you change the amount of time between doses (as in going from 1 dose to 2 doses) it may feel like withdrawal even if you have not changed the overall daily dose. It takes time for your body to adjust to any changes in the time of dosing and any changes in the amount of the dose. Were you on the pill form before changes to the liquid formulation? If so, that change may also require a period of adjustment. It is best to hold your dose constant after any large changes (timing of doses, large reductions, changes in formulation) so that your system can stabilize before you introduce another change. (Aside: It would be my hope that by dosing 2 times per day you are able to maintain a more constant blood serum level.  This, perhaps, might begin to alleviate some of your panic.)

Math equations:

To make a 5% reduction from 2 mg: 2 × 0.95 = 1.9 mg

To make a 10% reduction from 2 mg:  2 × 0.9 = 1.8 mg

To calculate mg to ml (from 2 mg/ml liquid): 1 ml ÷ 2 mg × 1.9 mg = 0.95 ml (for a 5% reduction)

                                                                          1 ml ÷ 2mg x 1.8 mg = 0.9 ml (for 10% reduction)

Note: When making your next reduction, always calculate from your present dose (not your original starting dose). So, if you wanted to again make a 5% reduction from 1.9 mg: 1.9 × 0.95 = 1.805 mg

Your doctor has you doing linear reductions. You are reducing 0.2 mg each time. So, the first reduction is 10%, the next is 11.1%, your third reduction is 12.5%, and the percentage reductions continue to increase with each reduction.

There is no quarentee you will not have withdrawal symptoms. The goal is to plan your taper so that your withdrawal symptoms are manageable. This generally means that, while you may not feel great, you are able to carry out your normal and needed everyday tasks.

Lastly, please do not be scared!  I do understand that you think it is "scary".  But what you are planning to do is possible.  You are doing the right thing by asking questions and making a reasonable plan (knowing nothing is written in stone...any plan can change to suit your unique needs!).

Let me know if I can help further!

 

[[ho...]]

@[El...] Thanks for all your help. My caregiver got very mad at me this morning for trying to change the schedule, so I had to start with a 10 percent reduction even though I wanted to do 5  This triggered my nervous system more which is part of what causes the non-epileptic seizures. They have something to do with your body being stuck in fight-or-flight mode.

She & my Dr won't let me set the pace of a taper even though she saw me go through SSRI withdrawal. I had to beg to even be able to do the liquid taper I'm on. He said it wouldn't be good for me to be tapering longer than the amount of time I was on it. Is this true?

Also, the pharmacist said to mix the liquid Ativan in applesauce, but I'm afraid some of it will be left behind that way. Can you dose it directly from the syringe into your mouth? And if you put a liquid amount in applesauce but leave it out for an hour, will it evaporate or still be ok/the right amount?

Because of the PNES, I'm unable to carry out most tasks. 

I was on the pill form before, yes. I asked for liquid because I wasn't sure how else to taper.

Should I ask my Dr if he can use 2 decimal places instead of 1 for the amount in mL also? And I have an appt with him so I'll try to ask about keeping the tapers 10 percent of the previous dose. I thought that was what I asked him to write out.

I had panic, crying at everything, 'brain' nausea, migraines, internal overheating, dry heaving & vomiting from before starting the Ativan.

After starting it, I have worse nausea, worse panic, & hyperosmia that makes the nausea worse, hyperventilation, & disorientation, & crying I'm unable to stop.

Hyperventilation, crying, disorientation, & hot flashes can also all be caused by PNES so it's hard to know what's what. I have hyperventilated so much that I felt like I was suffocating and gotten lightheaded.

I don't know how to tell if the symptoms are manageable because I already have daily  symptoms that feel unmanageable.

Thanks for your help 

[[ho...]]

Sorry, I'm still confused about the math. Could you explain it in more detail or explain the algebra where x explains the conversion? And the formula is in PEMDAS?

I know 10% of 2mg is (10/100)*2 = 0.2 so a 10% reduction is 2-0.2.= 1.8 mg

But I don't understand how you got 0.9 mL or why that number would be used every time/step 

Thanks

[[El...]]

@[ho...] So sorry your doctor is not allowing you to set the pace.. hoping your first 10% reduction goes well. Will your doctor allow you to hold this dose until you feel ready to do another 10% reduction?

Math formulas to convert mg to ml:

For the first 10% reduction to 1.8 mg : Since your liquid has a concentration of 2 mg/ml, to determine how many ml you need to take, you need to reverse this ratio to…ml/2 mg (or: 1 ml ÷ 2 mg). Then you multiply that result by the mg you are taking… {(1ml ÷ 2 mg) × 1.8 mg}. This will give you the 0.9 ml you need to take to ingest 1.8 mg.

If you then make another 10% reduction…1.8 mg × .9 = 1.62 mg. To find out how many ml you need to take, you would apply the formula the same way…{(1 ml ÷ 2 mg) × 1.62 mg} = 0.81 ml.

If your doctor is going to insist on his/her schedule, there is no need to purchase 0.5 ml syringe. But, if he is going to allow you to follow a true 10% reduction each time, you will need them. For example, in your second 10% reduction down to 1.62 mg, you need to ingest 0.81 ml (as shown). That would mean you would need your doses to be 0.41 ml and 0.40 ml. You would need the 0.5 ml syringe to measure 0.41 ml.

You can take the liquid directly from the syringe, but it has a rather unpleasant taste. I put my doses in a little water (you could use juice). If I am not taking a dose immediately, I store it in the refrigerator in an amber glass bottle away from light.  if you do use water or juice, make sure you drink a couple of rinses of the bottle/or glass to make sure you ingest the full amount of your dose.

Hoping you are doing well today!