summitbound: Which should I taper first, lithium, Effexor, or mirtazipine?

[manymoretodays]

Hi summit,

 

Are you getting how keeping a bit of the Valium on board now may actually help with your Effexor tapering, by not creating additional withdrawal symptoms?

 

And that it's the combination of ALL your medications that could be keeping you sick right now.   Add to that withdrawal.  You are in withdrawal land now. 

 

Here's what I've got from your history to date.

 

2015 began benzo withdrawal from Xanax 3mg  (keep in mind that each 1.0 mg of Xanax is equivalent to 20 mg of Valium)

present Valium dose is 8.87 mg

you are down over 2/3 of your original dose(taking into account Xanax and Valium equivalencies)

 

May 2017 Lithium 1350 mg

present Lithium 450 mg

you are down approximately 1/3 of your original dose

 

We're suggesting that you leave the Mirtazapine alone right now and the Valium.......as well as the Lithium(you just decreased that one)...........and start thinking about a Effexor taper, planning for that next.

 

I came off an MAOI too.......Nardil I believe.  That's when my problems with many, many medications began as well.

 

Love, peace, healing, and growth,

mmt

 

tips for tapering off Effexor

 

And I'll check back when I've got some more time summit and see how we can help with general coping.  I know it's tough going for you.

 

 

 

 

Edited August 14, 2018 by manymoretodays
effexor tapering link, post note

[manymoretodays]

10 minutes ago, Meimeiquest said:

You might have to divide the Valium into multiple daily doses to keep it even.  

 

Hi Meimeiquest!!!

summit has got his Valium dosing split into 3x/day.  See the daily notes a few posts back........

Great to see you stopping by. 

[summitbound]

I don't know that I understand.

 

I was on 3.0 mg of Xanax originally when symptoms appeared out of nowhere (I believe I hit tolerance).  3.0 mg of Xanax is equivalent to 60 mg of Valium.  So at 8.87 mg, I am now at 15% of my original dose.  I was cutting the Xanax by 0.25 cuts, then holding for many months at a time.  Felt very, very sick.  I just got off of a 3 month hold.  Holding has only lessened the symptoms some, but I am still in continuing withdrawal hell while holding.  So if I were to hold on my Valium for the next year, while tapering the Effexor, I would stay in valium withdrawal hell while tapering the Effexor.   The benzo withdrawals symptoms do not resolve or completely stabilize by holding.  (Maybe its different with Effexor?  If you taper for a while and then hold, do you feel much, much better while holding?)

 

I realize there are multiple medications at play, and combined they could be causing my symptoms.  I'm just trying to knock out the worst offender, which is most likely to be causing most of my current symptoms, first.  Based on all my symptoms listed above, are they most in line with benzo tolerance, or with a constant dose of Effexor?  Which is the worst offender?    Effexor wasn't even in play when my symptoms started and my AD was the Parnate (and lithum, which I'm on 1/3rd as much now).

 

Seems like there are two very different philosophies on this:

1)  Ashton says that when you are tapering of a benzo, you may need an AD to fend off the anxiety, depression, and suicidal ideation of benzo withdrawal.  I get that logic.  Can't imagine being depressed during this process.  For better or worse,  I'm already on an AD.

or

2)  Hold on the Valium so you have some benzo in your system to take the edge off the Effexor withdrawal (what SA is suggesting).  I get that logic too.  BUT, based on my experience, I will still be having benzo withdrawal symptoms over the next year, even holding.   Perhaps I'm one of the 15% of benzo users who have an extremely difficult time getting off.  Maybe 90% of people could hold at a constant benzo dose and feel just fine?  Like the 90% that can get off a benzo with not much trouble?  Are there links you could refer me to that explain how benzos mitigate Effexor withdrawal?  I do get the general concept that the benzo acts as a brake.  But it sure hasn't been a brake for my nervous system these last few years.

 

I guess I'm not seeing the clear cut reason why Effexor is the worst of my problems right now.  I absolutely want off of it (and everything else).  

 

I haven't researched Effexor withdrawal like I have benzo withdrawal.   What are the symptoms of Effexor withdrawal that the benzo is critical for mtitigating?

 

I really, really do appreciate everyone's time and help!!!!!!!!!!!  This is just a really big decision for me, so I'm trying to learn as much as I can.

 

 

[manymoretodays]

summit,

 

I'm just thinking that you were probably in some degree of withdrawal at that point.  When you say......"originally" , I'm not sure what time frame you refer to .   If we're going on back to when you came off Parnate, about a year and 1/2 ago.......heck, you were in major withdrawal then, too. 

 

I'm not a magician..........I don't know for sure.  I do know that you have had the opinion of not only one, but two great minds NOW on your situation............and that both agree........the benzo is not your main worry, that little bit of benzo(comparitively to where you were once at) may be your best friend for awhile.  We want you to hold on further tapering of that, and get to work on something else right now.  Coping skills and planning for your Effexor taper sound good to me.

 

I know......you've done a huge decrease in your benzo.  You must be feeling that withdrawal.  It's intense.

 

All I'm saying.......is maybe.......just simplify now.  Figuring it all out isn't helping.  You can be a withdrawal expert in a couple of years, okay?  They are needed.  You are already into some extreme withdrawal.  Why keep beating the dead horse of benzo tolerance to further death.  I don't even want to talk about tolerance.  It's not going to help you get on the road to healing from withdrawal any faster.  Do you get what I'm saying?

 

You're on a dangerous medication mixture.......... and from here on out we'd love to help, and support you, with safer harm reduction tapering.  That you have lowered the load of a couple of your major medication interactors,  is in your favor.

 

Love, peace, healing, and growth,

mmt

 

 

Edited August 14, 2018 by manymoretodays
emphasis, highlight, additional

[Altostrata]

1 hour ago, summitbound said:

I was on 3.0 mg of Xanax originally when symptoms appeared out of nowhere (I believe I hit tolerance).  3.0 mg of Xanax is equivalent to 60 mg of Valium.  So at 8.87 mg, I am now at 15% of my original dose.  I was cutting the Xanax by 0.25 cuts, then holding for many months at a time.  Felt very, very sick.  I just got off of a 3 month hold.  Holding has only lessened the symptoms some, but I am still in continuing withdrawal hell while holding. 

 

Correlation is not causation. According to your history, at no time were you on a benzodiazepine alone. The benzo plus any of your drugs, or any drug combination outside of the benzo, may be causing your symptoms. You assume your current symptom pattern is emitted through benzo tolerance, but it could be drug-drug interactions.

 

You're on such a toxic mess, it's impossible to distinguish benzo tolerance withdrawal from any other kinds of symptoms, even for you. You might be in some kind of hell, but it's not necessarily benzo withdrawal hell.

 

Besides, if you feel better while holding on the benzo tapering, hold on the benzo! If reducing it makes you feel sick, stop reducing it!

 

1 hour ago, summitbound said:

So if I were to hold on my Valium for the next year, while tapering the Effexor, I would stay in valium withdrawal hell while tapering the Effexor.

 

Incorrect. If you were to taper the Effexor, your symptom pattern is likely to change. Effexor and diazepam compete for the same liver enzymes. Reducing the Effexor is likely to speed the metabolism of diazepam. (Mirtazapine, which competes with both Effexor and diazepam for the same liver enzymes, will also be metabolized more efficiently.)

 

There are so many drugs involved, it's hard to predict what effect reducing Effexor will have. Overall, it reduces your drug burden and makes your drug cocktail safer.

 

ALL OF YOUR DRUGS ARE THE WORST OFFENDERS. Lithium is the most dangerous to your general health. It could destroy vital organs.

 

You may be taking being able to sleep for granted now. We do not. We want you to continue to be able to sleep. Because lithium and diazepam are "brakes" and mirtazapine may be aiding your sleep, that leaves Effexor, which does not appear to be doing anything good, to remove from your cocktail.

 

Good for you, you've done a lot of research on tapering diazepam. My impression is you have become fixated on it as the cause of all your problems. We have consistently advised you to hold on tapering the benzo. I have suggested reducing the Effexor several times now.

 

I've spent a good amount of time looking up the metabolism of the drugs in your cocktail and explaining why I think reducing Effexor is the best strategy. If you still wish to taper diazepam first, please seek support elsewhere -- Ashton is not our Bible.

 

[Shep]

On 8/12/2018 at 9:35 PM, summitbound said:

So, starting on 7/10 I went to all liquid and have been holding at 8.87 mg per day, thus the 3 x 2.96 mg doses show below.  Also, on 7/21 I cut my lithium dose from 562.5 to 450 mg.

 

Summit, I'm just making note that this lithium reduction is 20%, which is far too much of a decrease, and then only 11 days later, you reduced the benzo by 2% (from 9 mg to 8.87mg). 

 

If I were you, I'd hold for a really long time and spend some time reading what Alto and MMT have posted. 

 

16 hours ago, Altostrata said:

Ashton is not our Bible.

 

I'm going to comment on Alto's post regarding Ashton. I am very familiar with Benzo Buddies, as I found that site years ago before I found SA, and they do religiously uphold the Ashton Manual.  I left Benzo Buddies in disgust at how that site is run. They allow anyone who joins the site to give advice on how to taper - it's run in a very reckless and unscientific manner. Even Dr. Ashton herself has criticized her own manual, saying that ADs are not a good idea because SSRIs cause dependency (for more, see Dr. Ashton - The Bridge Project).

 

Like I mentioned to you over on your benzo thread, Benzo Buddies is great for social support, but very dangerous for getting taper advice if you are on more drugs than a benzo.  

 

18 hours ago, summitbound said:

This is just a really big decision for me, so I'm trying to learn as much as I can.

 

 

I would highly recommend reading Robert Whitaker's book:

 

Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America

 

Whitaker does a great job of documenting the problems with ALL psych drugs (not just benzos) and you may benefit from reading the case studies of the people he interviewed for the book, as many were dealing with long-term, polydrugging. 

 

If you are having trouble concentration and reading, please note Robert Whitaker has a ton of videos on YouTube. Simply go on YouTube and type in his name. 

 

I started psych drugs when I was 17 in 1985, a few years before you started, and as someone who dealt with massive polydrugging for decades, I'm finding all of Robert Whitaker's books to be a wealth of information and insight.  There's something called the "un-patienting process" which is when we learn to let go of labels, to call the medications "drugs" instead of "medications", and to find out who we are and who we want to be when we're off the drugs and healed. 

 

But it's a process, nothing that happens overnight. You don't know what it's like to be on these drugs until you come off. 

 

If you are serious about wanting to learn as much as you can - and I do believe you are - I would start with Anatomy of an Epidemic, go into a long hold, and get social support form Benzo Buddies, but I would avoid their tapering advice. 

 

Also, please find some non-drug coping skills you like. Here is a great list to get you started:

 

Non-drug techniques to cope with emotional symptoms

 

I don't know anyone coming off of 30 years of polypharmacy who was able to do so without finding ways of handling not only their symptoms from withdrawal, but finding ways of self-soothing and handling ranges of emotions once the chemical restraints are removed. 

 

It's good to start practicing these early in the process. 

 

[summitbound]

I want to find out if my medications have already caused damage to my liver.  If I go in to my primary care doctor, are there specific liver functioning tests you'd recommend?

[manymoretodays]

Liver enzymes.  You might get a BUN and creatinine as well- these check kidney function.

 

If interested you could also research a bit more on the Cytochrome P 450 system as related to the interactions of your current "cocktail".

 

Good to see you posting summitbound.  I meant to put together a self care package for you.  Time and state of mind has just not allowed for it though.

 

Love, peace, healing, and growth,

mmt

[Altostrata]

How are you doing, summitbound?

[summitbound]

I am doing O.K.  Just digesting everything mentioned above and doing research.  After 30 years of blindly doing what my psychiatrists said to do, because they were the "expert", I'm finally taking ownership of my mental health.  Doing research and becoming well informed is part of my recovery.

[summitbound]

A couple more questions:

1)  How long do I need to have held on my current dose of Valium before I start tapering the Effexor?  I assume I would start tapering my 187.5 mg of Effexor by reducing at a rate of 10% per month by counting or weighing the beads in my 37.5 capsule (micro-tapering)?

2)  Based on the discussion above, should I actually start feel BETTER the more I taper down my dose of Effexor?   I've been living in the benzo withdrawal world, where very few people feel better as they lower their dose -- it's a sufferfest right to the very end (that has been my experience as well, considering I've tapered my dose down by almost 85% and I feel as bad as ever).

 

[Shep]

On 8/27/2018 at 6:06 PM, summitbound said:

1)  How long do I need to have held on my current dose of Valium before I start tapering the Effexor? 

 

You may find reading Brassmonkey's concept of "Withdrawal Normal" to be helpful. He posted about it here in his thread:

 

Brassmonkey - Withdrawal Normal

 

Try to get to that point of Withdrawal Normal before you continue tapering again. 

 

On 8/27/2018 at 6:06 PM, summitbound said:

I assume I would start tapering my 187.5 mg of Effexor by reducing at a rate of 10% per month by counting or weighing the beads in my 37.5 capsule (micro-tapering)?

 

10% is more than a micro taper, which is generally considered 5% or less per month. Here are two types of micro-tapering: 

 

Micro-taper instead of 10% or 5% decreases

 

The Brassmonkey Slide Method of Micro-tapering

 

 Please note that we don't recommend a Daily Micro Taper, as you do need to incorporate holds. The holds are very important. 

 

On 8/27/2018 at 6:06 PM, summitbound said:

2)  Based on the discussion above, should I actually start feel BETTER the more I taper down my dose of Effexor?   I've been living in the benzo withdrawal world, where very few people feel better as they lower their dose -- it's a sufferfest right to the very end (that has been my experience as well, considering I've tapered my dose down by almost 85% and I feel as bad as ever).

 

It really depends. I wish I could tell you more than that, but unfortunately, everyone is so different in this journey. Some people feel better while they taper, others don't until they are off the drugs and well into the recovery process. 

 

The best advice to be offered is to go slow, hold often, and give yourself as much self care as possible. 

[summitbound]

I requested and received a copy of my records from my psychiatrist.  It looks like in the past 10 years I had been on Prozac, Effexor, and Cymbalta at various times.  In each instance, my psychiatrist did a rapid four week taper and I did not have "severe" withdrawal reactions (per his notes).  Granted, I was still experiencing "treatment resistant" depression, which could have itself been a withdrawal reaction.  Does this history mean I might be able to come off the Effexor relatively easily, perhaps faster than the 5-10% per month rate?  Again, I have NOT been depressed the past 2 years that I have been on the mirtazipine / Effexor combination, despite the challenges and horrible symptoms of benzo tapering.  Several months ago I did a cut from 225 mg to 187.5 mg of Effexor without any noticeable withdrawal symptoms.  I was in the middle of a 2 month hold on my benzo taper at the time.  Thanks so much for any insight you might have.

[ChessieCat]

43 minutes ago, summitbound said:

Several months ago I did a cut from 225 mg to 187.5 mg of Effexor without any noticeable withdrawal symptoms.

 

This is not unusual because you were on a high dose to begin with.  See this topic:  Why taper paper: dose-occupancy curves

 

43 minutes ago, summitbound said:

Does this history mean I might be able to come off the Effexor relatively easily, perhaps faster than the 5-10% per month rate? 

 

Previous history is not an indication of what will happen in the future.  In fact, the effect is cumulative.  It is better to stick to no more than 10% reduction so as not to risk getting bad withdrawal symptoms.  Many members find that the lower their dose gets the slower they need to go, by reducing less and/or holding longer.  See the occupancy info given above.

 

The following also applies to tapering too quickly:

 

On 10/9/2012 at 10:17 AM, Altostrata said:

Don't suddenly go off medication assuming that reinstatement is a safety net. This is one of the reasons we advocate gradual tapering to minimize withdrawal symptoms. Once the nervous system is destabilized by withdrawal, all bets are off. Humpty Dumpty has fallen off the wall.  (Humpty Dumpty is a character in a children's nursery rhyme - he is an egg.)

 

 

 

Edited November 18, 2018 by ChessieCat

[summitbound]

I feel as though I become much more symptomatic in the evenings   .  I’m wondering if the mirtazipine’s 20 hour half life might be effecting me.  I’d like to try dosing half at bedtime, and half 12 hours later (around 10 AM).  I take my Effexor at 7:00 AM, when I wake up.  Does anyone see a danger with a trial of a split dose?  I of course realize this could effect my sleep since I won’t be hammered with the full mirtazipine dose at bedtime.  And I don’t know if split dosing would increase my chances of serotonin syndrome. 

[ChessieCat]

Hi summitbound,

 

I've moved your post to your Intro topic, which is the place to ask questions about your own situation and where you can journal your progress.  SA works differently to many other forums.  We like to keep the information together so it is easy to refer back to your previous information.

 

Q:  Is your drug signature up to date?  If not, please update it so the information is current.  Thank you.  Account Settings – Create or Edit a signature

 

Q:  Have you been keeping daily symptoms notes recently?  If yes, please post the last week.

 

If no, please do so and post them here in your topic so the mods can assess your situation to see if/what dose splitting might make a difference.

 

This is an example of what is required:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

[manymoretodays]

Hi summitbound and welcome back,

1 hour ago, summitbound said:

I feel as though I become much more symptomatic in the evenings   .  I’m wondering if the mirtazipine’s 20 hour half life might be effecting me.  I’d like to try dosing half at bedtime, and half 12 hours later (around 10 AM).  I take my Effexor at 7:00 AM, when I wake up.  Does anyone see a danger with a trial of a split dose?  I of course realize this could effect my sleep since I won’t be hammered with the full mirtazipine dose at bedtime.  And I don’t know if split dosing would increase my chances of serotonin syndrome. 

 

How are you faring these days?

I don't really know how to answer your question, as far as if your idea of split dosing would increase your chances of serotonin syndrome right now.  Or what symptoms you are referring to in the evenings.

 

So.....give us more information, if you will:

Would you do one of the drug and symptom logs again for us.  Simple form, like what you did here:  summitbound drug and symptom notes, August 12th

Try and get a couple days in there when you post it.  Keep it simple.  Date.  Then time on the left, drug name and dosage on the right.  And then symptoms on the right as well.

And then, if needed go to Account settings to update your signature as well.  As far as any recent changes in any of your other medications.

 

If more elaboration is needed on the symptoms, than in the concise form of the notes.  Post that all separately

 

Love, peace, healing, and growth,

mmt

And looks like ChessieCat beat me to it.  But maybe this will help you remember how too.

Hope you are well enough summit.

.

[Altostrata]

On 11/18/2018 at 11:33 AM, summitbound said:

In each instance, my psychiatrist did a rapid four week taper and I did not have "severe" withdrawal reactions (per his notes).

 

Too bad he didn't note which withdrawal reactions you did have. Who knows what he thinks is "severe."

 

17 hours ago, summitbound said:

I feel as though I become much more symptomatic in the evenings   .  I’m wondering if the mirtazipine’s 20 hour half life might be effecting me.  I’d like to try dosing half at bedtime, and half 12 hours later (around 10 AM).  I take my Effexor at 7:00 AM, when I wake up.  Does anyone see a danger with a trial of a split dose?  I of course realize this could effect my sleep since I won’t be hammered with the full mirtazipine dose at bedtime.  And I don’t know if split dosing would increase my chances of serotonin syndrome. 

 

Exactly what increased symptoms do you have in the evenings? We need your daily notes as explained by ChessieCat and manymoretodays.

 

Please DO NOT change or experiment with your drug schedule, this introduces confounding factors in interpreting your symptoms. A split dose of mirtazapine is probably NOT a good idea.

[summitbound]

I'm writing tonight scared, with my tail between my legs.   I should have listened to everyone sooner.  Three weeks ago I began holding on my Valium taper at 8.1 mg.  I was so symptomatic, and getting nowhere.  I've now read numerous articles on seretonin syndrome and finally convinced myself of the dangers, realizing that I may be experiencing chronic mild seretonin syndrome.  I am now fully committed to holding on the Valium and tapering off the Effexor.  For four days I have pulled 1 bead each night from my 37.5 mg capsule of Effexor (I'm on 187.5 mg).  That equates to a 10% per month reduction.  As noted in my last post, I have a very distinct pattern of feeling much worse from 7:00 pm to 10:00 pm.  I take my mirtazipine dose around 9:30 pm, and within half an hour feel much better.   The symptoms starting at 7:00 pm are increasing head pressure, tinnitus, exhaustion, occasional arrythmia, and worsening cognition.   The last two nights I've checked my blood pressure around 8:00 pm, and  both BP and HR are quite high for me:  158/93 90 bpm.   (Note:  I was feeling aweful the entire three weeks since starting my Valium hold  -- I started tapering the Effexor anyways because I felt desperate to take some action and get some relief.  More dizziness and feelings of being slightly drunk during the day this last week).   Could my dosing schedule have something to do with my increased symptoms and BP in the evenings?  Am I getting flooded with seretonin in the PM?  And should I perform some emergency triage, and go ahead and just make a 5% or 10% Effexor cut, rather than micro-tapering over the course of a month?  Thanks so much for any insight you can provide.

[ChessieCat]

On 12/2/2018 at 7:39 AM, Altostrata said:

We need your daily notes as explained by ChessieCat and manymoretodays.

 

Have you been keeping these?  If yes, please post them.  This will allow the mods to assess your situation.

[ChessieCat]

2 minutes ago, ChessieCat said:

Have you been keeping these?  If yes, please post them.  This will allow the mods to assess your situation.

 

If no, please do so over the next 3 days and post them.

[summitbound]

O.K., I'll keep a log the next three days.

[ChessieCat]

Example was provided in a previous post.

[summitbound]

Hello All -

My nervous system is feeling more unstable and doesn’t seem to be calming down.  I’m scared.  Below is my recent symptom journal.  I felt so awful on Monday that I decided to take my blood pressure and heart rate.  I was surprised at how high both were, so I keep measuring them the next several days.  My normal blood pressure is around 125/80, with a resting heart rate of 65.   After holding on my Valium for a couple weeks, I started tapering my Effexor on 12/28.  I wasn’t feeling that great even before starting that Effexor reduction, but the last 5 days have been worse symptomatically.  I’d be very grateful for any advice that anyone could give.  My plan, unless you recommend otherwise, is to hold until I feel some improvement.  Again, I am so sorry I didn’t heed your earlier advice to hold on the Valium and taper the Effexor sooner.  I made a big mistake.

 

12/28  reduced Effexor (187.5 mg) by 1 bead (very first reduction, with the 1 bead pulled from my 37.5 capsule)

12/29  reduced Effexor by 2 beads

12/30 reduced Effexor by 3 beads

 

Monday 12/31

In bed all day sick with withdrawal symptoms.  Dizziness, bad spaciness. 

6:00 AM Took Effexor 187.5 – 3 beads, lithium 225, Valium 2.7

2:00 PM Took Valium 2.7

7:00 PM Bad spaciness, head pressure, anxious, noise and touch sensitivity, arrhythmia 

8:00 PM   Blood pressure and heart rate138/92 80 143/90 87 

9:00 PM   Took mirtazapine 30, lithium 225

9:45 PM  BP 151/96 77 

10:00 PM Took Valium 2.7;  BP147/93 76 124/93 83

11:00 PM  BP 138/89 80

11:15 Pm. - Feel asleep

 

Tuesday 1/1

6:00 AM  Woke up. Vivid dreams last night.  

6:05 Took Effexor 187.5 – 4 beads, lithium 225

6:15 am. Restless.  

8:45 Am - Lower leg twitches, mild anxiety, cold core, spacey, mild tinnitus, mild head pressure, sore muscles. 

9:00 AM - Breakfast (not much appetite)

10:30 AM   BP 128/83.  123/77. 84

11:30 AM.  Bad head pressure

12:15 pm.  Irritable, rageful looping thoughts. Moderate tinnitus. 

12:30  Pm. Lunch

2:00 PM   Took Valium 2.7

12:45 pm - tinnitus, burning, joint pain, tongue, mild brain fog, minor twitching lower leg 124/85 79. 132/80 79

4:45 pm - cold core, burning lungs sensation

6:00 pm - dinner

6:30 pm. - mild headache, burning skin on arms, noise sensitivity, ice cold feet. 

9:00 pm -  BP 120/90 74  147/89 77.  131/91 75.  Head pressure, loud tinnitus, occasional leg jerk

9:20 PM  Took mirtazipine 30, lithium 225, 

9:50 Pm – Valium 2.7

10:45 Pm. Went to sleep

Wednesday 1/2

7:00 AM. - woke up, headache focused behind left eye, mild tinnitus

7:15. Am - Took Effexor 187.5 – 4 beads, lithium 225, Valium 2.7 

7:20.  BP 143/91 83,  130/89 77,  131/88 76. 127/88. 75

8:30 - Breakfast 

9:00 am.  Spacy, brain fog, leg muscle aches, tinnitus.  

10:00 am.  Slight tremor in hands

10:20.   BP 126/93. 91. 124/97. 89

11:00  Bad spaciness, tinnitus  

1:30.pm Lunch

2:00 pm  Valium 2.7

2:30.pm Tinnitus, head pressure, bad cognitive impairment. Some anxiety. 

3:30 pm  BP 138/91 82. 135/89 78

4:45. Bad head pressure, in top half of head; bad cog; loud tinnitus; burning tongue; bad short term memory. 

6:30 Dinner

7:30.  Bad fatigue, ice cold feet, tinnitus, head pressure, sound sensitive, touch sensitive, sore thighs, burning skin on face and arms

8:15. Pm. Strong heartbeats/arrhythmia sensation

8:30.  BP 153/88 77.   127/88. 76.  154/83 72

9:00  Took mirtazapine 30, lithium 225;  looping, angry thoughts

9:45 pm  BP 145/104 88. 145/92. 85.  137/100 84

10:00. Valium 2.7

10:15.  Bad pressure in the top of my skull; pitch of tinnitus changed abruptly 

10:45.  BP 130/85 80

11:00 went to bed

12:30 am fell asleep

 

Thursday 1/3

6:45. Woke up. Took Effexor 187.5 - 4 beads, lithium 225, Valium 2.7 

8:00   Breakfast 

8:30 139/85 69.  139/86 70

8:45. Jittery, scatterbrained 

9:30. Slight hand tremor

10:00.  Panicky and fearful episode for 1/2 hour

10:30. HR from FitBit is consistently in the 80’s

12:30.  Tinge of depressive feelings

1:00. Lunch

1:15.   127/91 77.   137/86. 86.  132/91 84  Nervousness system feeling more stable.  Not on the verge of panic.  

1:45.  Loud Tinnitus, cold core. 

2:00.  Valium 2.7

2:45.  Spacy, tinnitus, light head pressure

3:15.   135/90 87.  135/89.  84.  Tinnitus 

4:00.  Head pressure, loud tinnitus 

5:00.  131/88 85.  131/87. 86

6:00. 130/89. 98

6:30.  Dinner

7:00. Severe fatigue, noise sensitivity, loud tinnitus 

9:00.  142/93 90.    134/89 83.   Arrhythmia, tinnitus, sore muscles, burning tongue; less looping thoughts

9:15.   Mirtazipine 30, lithium 225

9:45.  Valium 2.7

10:30. Went to bed

11:00.  Fell asleep

 

Friday 1/4

7:30.   Woke up.  Lithium 225, Effexor 187.5 - 4 beads, Valium 2.7 

8:00 am.  Feeling a bit better this morning; a little more clear headed

9:00   Breakfast

9:30.  136/88 88. 131/88 89

10:30.  BP 138/98. 95

12:00  Head pressure, tinnitus, cog fog, spacy, a bit confused

1:00.  Thigh and lower back muscle pain, a bit dizzy.

[ChessieCat]

Thank you for providing your notes.  The mods have been advised that they are available.

[summitbound]

Thanks. 

[Altostrata]

Please stop changing your Effexor dosage.

 

Your benzo intake seems irregular? What is your usual Valium schedule?

 

How do you feel when you wake up, before you take your morning drugs? Why are you taking Effexor, lithium, and Valium at the same time in the morning?

 

Your symptom pattern indicates a drug adverse reaction after your morning drugs. I don't like the tremors and twitches.

 

Have you gotten periodic kidney function blood tests to monitor lithium?

 

[summitbound]

I always take 2.7 mg of Valium at 6:00 am,  2:00 pm, and 10:00 pm.  Equal doses every 8 hours.   If I'm off at all on my dosing time, I feel it.  I need to update my signature line.  I'm holding at 8.1 mg of Valium per day.

 

I can tell within the first 15 minutes of waking up if its going to be a "good" day or a bad day.  Based on how much head pressure I have, how much muscle and joint pain, and how cognitively spacey (or clear) I feel.   After I take my morning drugs, I don't feel much better.    Occasionally, I can fall back asleep for an hour after 6:00 am, which I hypothesize is the Valium helping me fall back asleep.  The only reason I take the Effexor and lithium in the AM is because that's what my psychiatrist told me to do.   I've thought about bumping the Effexor and lithium back to later in the morning to see if it would make any difference.

 

Yes, on the lithium testing.  My doctor just ran a lithium level test about 2 weeks ago, and it came back "low" (as in low in the theraputic range).  He was looking specifically for lithium toxicity.  I had a whole slew of lab work done over the last month, which I'd be happy to share.  Things that were out of or near the range were WBC (at lower limit),  lymph ABS (low, below range),  mono ABS (low , below range),  bicarbonate (low, below range), homocystine (high, out of range), B12 of 412,  and low CoQ10.  

 

[summitbound]

So on 1/3 I started wearing my FitBit again for the first time in a long time.  Attached is an image of my resting heart rate from yesterday.  I was at rest the whole day.  My heart rate seems to roughly follow the Effexor XR half-life curve.  I guess the question is, is this a pattern that has been going on for a long time and I just didn't know it, or is this a withdrawal reaction phenomenon?  I plan to wear my FitBit every day now to monitor this.

[summitbound]

Here is my heart rate graph from 1/3.   Again, I was at rest pretty much the whole day (I definitely did not do any exercise that would put me into the "Fat Burn" zone).

[Altostrata]

It's looking to me like the Effexor-Lithium combination is causing an adverse reaction afterward. Since it's proved difficult for you to reduce Effexor, if I were you, I'd reduce the morning lithium by 25mg. Observe for 4 days. If all goes well, reduce the evening dose by 25mg.

 

Please let us know how you're doing.

 

Have you mentioned that you're taking a toxic combination to the doctor who prescribed these drugs?

 

PS A lithium level test is not relevant for our purposes. What you need is a kidney function test. If your doctor is not doing this periodically, he is remiss.

[summitbound]

O.K., I will try reducing the lithium and will check back in with you.

 

My psychiatrist put me on this toxic combination.  Eight months ago, when I finally realized that my drugs were likely the cause of my declining health, I sent him an email in which I asked him point blank, "Dr. ____, is it possible that my medications could be causing my health issues?"  He responded, "No, I am confident that you have CFS."  My health originally started to decline in 2013, and I spent the next several years trying to find out the cause, reporting all my symptoms and all my medical tests to my psychiatrist.   In 2015, at my insistence, I asked him to start reducing my meds to eliminate variables.  The first thing he did was to start reducing the 3.0 mg of Xanax I was on for decades.  I now know that through me into withdrawal,  but the reactions weren't immediate and I didn't connect the dots.  I went to more than thirty different doctors seeking answers for my crushing fatigue and worsening cognitive impairment.  Not one suspected my meds, which I accurately reported at each and every appointment.  In September 2017, my wife and I went to the Mayo Clinic out of desperation searching for answers.  The neurologist at Mayo diagnosed me with "suspected autoimmune encephalitis" for which I received 8 weeks of IV steroid and 8 weeks of IVIG infusions for.  The infusions didn't help, and it wasn't until my wife and I googled "benzodiazepine withdrawal" that we finally found an answer.  So, I am so angry with my psychiatrist that I haven't scheduled an appointment with him in 8 months.  If I saw him, I would lay into him and lose it, which would be my last appointment.  He is still doing my refills.  My primary care physician is on board with me tapering off all my meds, and has agreed to be a backup prescriber.  However, he is clueless about harm reduction withdrawal protocols.  I feel like I have been abused by the entire medical profession, not just psychiatry.  I do intend to have a final appointment with my psychiatrist to inform him of the harm he's done, in the hopes it makes a difference for his other patients.

 

I did ask my PCP doctor recently to check my kidney function.  He did, and said everything looked normal.  If it would be helpful, I have access to all my labs and could pull up specific results.

 

Thank you so much.  I really, really appreciate your help.

 

[Altostrata]

I'll accept your report of normal kidney labs.

 

Very few doctors, even the most elite, are knowledgeable about adverse drug reactions, as you have found.

 

Still, you might make a complaint about the unholy cocktail fashioned by the prescribing psychiatrist to your state medical board.

[Finnishgirl]

@summitbound

How are you these days?