AJ 716: Cymbalta reduction - likely desperate

[AJ716]

October 28
Midnight – Bupe 4 mg
12:45- Atenolol 25 mg
3:00- Melatonin 1.25 mg 
4:00- Sleep (exhausted)

11:00 pm- Wake.  Episode started (usual symptoms).
1:00- Bupe 4 mg (usually taken shortly after waking up but I forgot). 
1:15- Anxiety extreme; sudden.  Lasted 15 minutes. Temperature fluctuations.
           No meds. 
1:45- Atenolol 25 mg (usually taken shortly after waking up but I forgot). 
          Episode passed.  
2:00- Magnesium 200 mg
5:30- Zoloft 100 mg.
7:00- Xanax .125 mg.  Anxiety bad. Also a headache.  
7:20- Ears started to ring again. 
7:30- Cymbalta 54 mg.  Anxiety starting to pass. 
8:00- Other supplements 

 

I anticipate the rest of the evening going without incident. My next medication dose is for Bupe at midnight. 

 

Notes: 

Late last night (after/around midnight) I did not need a second dose of Xanax. Usually I have late anxiety and also cannot sleep unless I have one.

 

Today’s episode symptoms were not as bad as yesterday, Oct 27th. I was very tired toward the end but didn’t go into the extreme fatigue phase.     

 

Muscle tension and ringing ears passed when the episode ended. Usually the ringing is continual (24 hours).  I only noticed it stopped because it started again this evening.  Usually there is some mild muscle tension all of the time as well, but that hasn’t come back yet.  

 

 

[AJ716]

Medications, potential drug interactions, and warning:

 

Zoloft with Cymbalta– Major (Serotonin syndrome)

Zoloft with Buprenorphine – Moderate (Serotonin syndrome)

Zoloft with Magnesium Citrate – Moderate (irregular heart rhythm)

 

Cymbalta with Buprenorphine – Moderate (Serotonin syndrome)

Cymbalta with Valium – Moderate (dizziness, drowsiness, confusion)

Cymbalta with Xanax – Moderate (dizziness, drowsiness, confusion)

 

Buprenorphine with Xanax – Major (central nervous system depression)

Buprenorphine with Valium– Major (central nervous system depression)

Buprenorphine with Magnesium Citrate – Moderate (irregular heart rhythm)

 

Magnesium Citrate with Vitamin D - Moderate (elevated magnesium blood levels)

Magnesium Glycinate with Vitamin D - Moderate (elevated magnesium blood levels)

[AJ716]

Below is a list of other medications that have been prescribed to me within the last two years. All can affect Serotonin production. 

 

Anti-nausea medications

Metoclopramide – increases Serotonin.  Obvious interaction with Cymbalta and Zoloft!

Ondansetron – increases Serotonin.  The same.

Both made me feel worse so I stopped each after just one dose.

 

Cholesterol medication

Simvastatin – potentially increases Serotonin.  An interaction with Cymbalta and Zoloft can cause muscle tension.  

Made me feel worse and I stopped taking it when my cholesterol lowered after 8 months.

 

Hormone Therapy 

Estrogen - effects include increasing serotonin and the number of serotonin receptors in the brain.

Progesterone - thought to promote good moods by boosting serotonin.

Prescribed to me 17 months ago for menopause and the doctor's belief that "the change" was why I had become so ill.  Initially these made me much worse but I was told to stick with them and let them work.  I am currently still on these but I began tapering a couple of months ago after needing breast biopsies.

 

Vitamin B Complex - Made me feel much worse and I stopped after just two days. 

 

I currently take Chia Seed Oil (capsules) as a supplement.  Recently discovered that it increase Tryptophan, a precursor that can increase serotonin synthesis.  I currently still take this but am going to stop.

 

Notes:   Most of these were prescribed to help alleviate symptoms that were likely caused by Serotonin Toxicity to begin with.  I’m beyond angered and frustrated at the ignorance and horrible judgement of my doctor(s) for prescribing the combination of Serotonin poisons to begin with!  Let alone adding more instigators to the mess after I became ill.  The likeliness of major interactions was so glaringly obvious I’m even mad at myself for not figuring this out sooner....but the doctor?  This is ufb. 

 

Thanks for pointing me toward the medicinal drug interaction website and the assignment, Altostrata!   

[AJ716]

October 29
Midnight Bupe 4 mg
12:45 Atenolol 25 mg
1:00-3:00 Episode symptoms beginning: Mild palps. Ears ringing on/off.  Dizziness. Leg weakness. Mild arm, muscle spasms. *No shoulder or neck tension. *No nausea.
3:00 Melatonin 1.25 mg 
4:00 Couldn’t fall asleep. Perhaps overtired. Mind racing.
4:50 Xanax .125 mg but still couldn’t sleep.
8:00 Sleep 

 

2:00 pm. Woke. Episodic (the usual symptoms; slight variance in degrees).
2:05 Atenolol 25 mg.  Walked/paced slowly. Feel it helps deter worsening.  
2:20 Made cocoa.  Drank very slowly. 
2:30 Bupe 4 mg
2:45 Tylenol for headache.  
3:00 Nausea and Akathisia stopped (much earlier than usual).
3:30 Episode stopping. Muscles relaxing; ear ringing less; warmed up considerable.  Still with fear and racing thoughts.  *Tired but no fatigue phase. 
3:40 Magnesium 200 mg
5:00 Zoloft 100 mg.
6:00 Paranoid, scared, hazy, hard to focus.  Not anxiety exactly.  
6:30 Anxiety and mild palps.
7:30 Still with anxiety and mild palps. 
7:45 Xanax .125 mg
8:00- Cymbalta 54 mg.  
8:00- Other supplements 
 

[AJ716]

Update:

 

On Oct 31st (tomorrow) I'm reducing my Cymbalta again by another 10%.  Going down from 54 to 48.5 mg.  I'm hoping to cut the duration to one week and quicken the pace.  I just completed my first "course" of a two week taper (went from 60 to 54) and believe it went as good as can be expected. 

 

Today I had a second day in a row of fair/moderate improvement regarding my early episode.  Both days the length of time was less and I avoided an extreme fatigue phase.   Feeling a positive difference has been encouraging.  

 

 

[ChessieCat]

11 minutes ago, AJ716 said:

I'm hoping to cut the duration to one week and quicken the pace. 

 

You are currently between a rock and a hard place.  I can understand your urgency to reduce you drug quickly because of serotonin syndrome, however I suggest that you do not reduce before 2 weeks after a reduction.  And then only if you are experiencing no more than mild withdrawal symptoms.

 

Check out the graphs in this topic which show the dose occupancy.  Why taper paper: dose-occupancy curves

[AJ716]

Hi C-Cat,

 

Tyvm. I feel like all that I do is research and study to try and understand what I'm going through. It's how I've been spending most of my time the last couple few weeks, lol.  The link you provided gives me quick access to many explanations that I've been seeking and will be helpful. Within my first few days on this forum I was told that @ 40 mg of Cymbalta I will reach a key level regarding my body's Serotonin excess. I don't understand it yet but I'd like to.  Regardless I'm soo hoping it will be a time I experience more relief. 

 

Yeah.  I've been really tempted to push the taper but the stories of cold turkey scare me to death.  That seems to be a worse rock and a hard place with no end in sight.  At least this way I'm familiar with personal coping strategies and know what to expect. 

 

I think extending the time period between the Zoloft and Cymbalta has been helpful.  I hit a snag though and wonder if you can advise me?  Today I took the Zoloft at 4:30 pm.  I was scheduled to take Cymbalta at 8:30 pm but I forgot and took it when I remembered, at 10:30.  If I stay at original pace tomorrow's dose would be 9:00 pm but I fear it will be too early (less than 24 hours).  Do you think my mistake will complicate it?

[ChessieCat]

Generally we suggest only making one change at a time, ie make a dose time change OR a dose change but not both.  However I understand the difficult position you are in.

 

Are you moving both Zoloft and Cymbalta?

[ChessieCat]

8 minutes ago, AJ716 said:

I was scheduled to take Cymbalta at 8:30 pm but I forgot and took it when I remembered, at 10:30. 

 

What time do you want to start taking Cymbalta permanently?

[AJ716]

52 minutes ago, ChessieCat said:

 

What time do you want to start taking Cymbalta permanently?

 

 

I was thinking midnight.   

 

53 minutes ago, ChessieCat said:

 

Generally we suggest only making one change at a time, ie make a dose time change OR a dose change but not both.  However I understand the difficult position you are in.

 

Are you moving both Zoloft and Cymbalta?

 

 

Yes. Both a half an hour each day (opposite direction).  Oop I misunderstood, my bad. I didn't realize I shouldn't move both at the same time.

 

Edited October 31, 2020 by ChessieCat
extracted responses from quotes

[ChessieCat]

9 minutes ago, AJ716 said:

Yes. Both a half an hour each day (opposite direction).  Oop I misunderstood, my bad. I didn't realize I shouldn't move both at the same time.

 

I think you are only doing half an hour for both so it might be okay.  But yes usually only one change at a time.

 

10 minutes ago, AJ716 said:

I was thinking midnight.   

 

Well you might as well stick to the same time you took the last dose then.  I wouldn't move it though.  Actually it might be a good idea to stay at that time for 3 more nights.  That would then be the same schedule if you have moved only 1/2 hour each day.

 

[ChessieCat]

And set a reminder!!!

[AJ716]

Lol, got it (alarm). 

 

I set a reminder to take Cymbalta at 10:30 pm for three more nights.  And will continue with the Zoloft a half hour each day.   This crap has taken its toll cognitively.  Literally I have to write little notes to remind myself to do things that help me remember  😵  Ty!

 

 

[AJ716]

Update on Cymbalta Taper: 

 

The first stage of my taper lasted two weeks, from October 14th - October 30th. It was a 10% reduction from 60 mg to 54 mg.

Currently I'm on the 5th day of my second stage.  I reduced another 10% and went from 54 mg to 48.5 mg.  

 

It's been difficult but I'm hanging on.  I still have episodes which are very uncomfortable and last at least a few hours after waking up, however the symptoms have lessened in severity.  The noticeable difference makes me confident the medication is the definitely cause.  Most days I still have a period of extreme fatigue on top of them.  

 

Besides the episodes I've had continual withdrawal symptoms (24/7).  The worst is starting to pass (knock on wood) but I'm exhausted and bummed.  Not getting a break and knowing life will continue this way indefinitely is frustrating as hell.  I look forward to no longer feeling rushed and taking more time between directions.  I'm pooped. That's all for now.  😴

 

[AJ716]

Update and a couple of questions.

 

I forgot to mention yesterday that I've successfully adjusted when I take Cymbalta, now at midnight (third day today).  I'm still moving the Zoloft to earlier and am going slower now, with two days at a specific time before moving it another half hour (Nov 4th and 5th at 3:00 pm; Nov 6th will be 2:30).  When I reach 2:00 pm I plan to hold until I successfully change my sleep schedule and feel it's steady.  Now I use an alarm and it's a terrific help!  This is good.  I feel like I'm accomplishing something!  

 

My anxiety was worse today and it turned into panic.  I think some of it was situational (news) so I stopped watching.  We lost power a couple of minutes later and that got me moving, which I think helped clear the anxiety.  If it hadn't gone out I doubt I'd have been able to convince/force myself to move.  Fear had me glued to my chair.  Anyway, I wonder if the changing of the timing of my meds could have contributed?  I'm not sure if that's a thing, lol.   I'm hoping it is and that perhaps after my body adjusts to the new medication times it won't be as problematic.  I'm scared of having more anxiety.  That's similar to what I experience every night when I should be focused on going to sleep. Naturally I loathe waking to an episode and as it seems that as a result I end up fighting sleep. I don't want to go to bed even if I'm tired.

 

Lastly, on 10/19 I stopped taking Simvastatin 10 mg (cholesterol med).   A couple of weeks earlier my doctor told me that my cholesterol had decreased considerably and was alright now.  He didn't tell me to stop and I forgot all about it until I got paranoid that it was adding to my Serotonin problem.  So I just stopped.  I also stopped Vitamin D, Chia Seed Oil (capsules), and Mg Glycinate (all out of paranoia they might be contributing to the production of serotonin; for example I learned that Chia Seeds are loaded with Tryptophan which is required for Serotonin production).  Of the supplements Vitamin D was the only one I had been on consistently for the last couple of years.  I totally regret discontinuing all of those without checking in here first and am wondering if I screwed up badly?  Could suddenly stopping have caused withdrawal symptoms or added to any existing problems?  I should mention that about 18 months ago the doctor prescribed me a Vitamin B-Complex.  I don't recall that I was low on Vit B but think it was meant as a boost to help anxiety.  I took it twice and each time had a horrible panic attack, so I stopped. 

 

 

 

 

 

[ChessieCat]

I think it more probably to do with the current election situation.

[Colonial]

It's hard to pinpoint since you've now dropped 20% of your dose in 3 weeks trying to find a stabilization dose, changed the timing of the meds and dropped a lot of other supplements.  My suspicion, because of the anxiety is it's the high fluxuation of the med levels and environmental (med timing, whatever your watching) but,  everything added together can't be ruled out.

 

Edited November 6, 2020 by Colonial

[ChessieCat]

5 minutes ago, ChessieCat said:

I think it more probably to do with the current election situation.

 

Just to clarify, my comment was directly in response to AJ's question about med timing.  I was remiss and did not look at the recent history.

 

But the fact that the anxiety started when watching the news cannot be ruled out as being the cause or contributing to it.

 

Thanks for your "full" response Colonial.  This mod will log off now and go and sit in the naughty corner.  I'm only joking, but I do have to go.

 

Good work Colonial. really on the ball.

[AJ716]

Haha, I can complicate a bowl of Cheerio's and since the political atmosphere/news is never pleasant I don't think it was a remiss suggestion.  I thank you both.  The panic occurred during at a more susceptible time and the news tipped me.  

 

 

[Colonial]

I'm only the broken clock right twice a day, Chessie Cat's on target the other 23 hours and 58 minutes. 😎

I just attempt to follow along and learn from the "big kids". 🤠

 

That being said, I don't know how watching a roomful of strangers in Philadelphia sitting at tables looking at ballots can be upsetting, but it certainly is...

I had to turn it off after 20 minutes, Lol.

 

[AJ716]

Another lessen for me - no news is good news!   I wonder if memberships and post increased with significance this year or since Covid?  

 

 

 

[ChessieCat]

The site did get busy earlier this year and Alto closed the site to new registrations for about 6 weeks (I think).  This was because of the influx of new members as well as the mods needing to take time away from the site for their own life issues and self care.

 

I haven't watched TV for about 3 years now and get my news from the internet at the time of my choosing.

[AJ716]

17 hours ago, ChessieCat said:

The site did get busy earlier this year and Alto closed the site to new registrations for about 6 weeks (I think).  This was because of the influx of new members as well as the mods needing to take time away from the site for their own life issues and self care.

 

I haven't watched TV for about 3 years now and get my news from the internet at the time of my choosing.

 

Seems the stress of Covid and responses have really taken its toll on everyone.  It's a very impressive forum.  Cannot blame ya'll one bit.

 

We got rid of cable and have not had a functioning TV for about 14 years.  I do the same as you but haven't been choosing wisely.  Being sickly a lot is very boring.

 

 

My daily episodes have worsened and back to the same severity before I started this process.  Actually I only saw real improvement on the 6th and 7th day of tapering (Oct 16 and 17).  I assumed that was a delayed response from initially cutting the Cymbalta dose in half (from 60 to 30 mg for three days) and a good indication that the episodes are caused by the medications.  Since I went back up to 54 mg for a slower tapering process I thought it likely that I'd revert to feeling poorly again, however not to the extreme that I have been.  In a couple of ways they have gotten worse.  Mostly though I thought my symptoms would generally reflect the reductions since this isn't just about a medication taper for me. With SS one should experience relief when removing the poison. Is that correct?

 

This is making me question whether I'm correct in my belief that the episodes are the result of Serotonin Toxicity, despite other evidence.  The symptoms are indeed accurate for the mild form and my medication history is definitely spot on.  However I've yet to discover cases that occur in daily cycles like mine do and I haven't discovered any illness that is caused by the waking up process.  That's an important factor I initially forgot to make clear.  The episodes are sparked by chemicals being dumped when I wake from a long period of sleep.  If I don’t fall into a deep sleep then I don’t experience an episode.  There have been a couple of times that I needed stayed up all night and I didn't have one.  So in terms of timing they are cyclic but only because sleeping patterns are. They are actually triggered by something during the transition of sleeping and waking up....  This leads to other questions:   Could Serotonin be the chemical being dumped?  Could it be norepinephrine?   Or is it something else not related to medication?

 

Hope of getting better inspires me to keep fighting but whenever I lack it I contemplate suicide (not saying I'm planning it because when an episode passes I'm always grateful I didn't do anything, but mentioning this helps convey how bad it gets).  I obviously still want the truth. My general physical state is failing from exhaustion, not eating, and wear-tear from the fight.

 

Any words of wisdom and help figuring this out would be soo appreciated. Please anyone.  Am I making sense?  Gosh I wish there was an easy test.  These completely debilitate me and the extreme fatigue or lethargic phases are becoming quite worrisome.  The last two days I didn't take the blood pressure tablets when I woke up (they help with the panic phase) because my blood pressure drops.  

 

Edited November 7, 2020 by ChessieCat
extracted response from quote box

[ChessieCat]

On 11/6/2020 at 2:06 PM, Colonial said:

you've now dropped 20% of your dose in 3 weeks trying to find a stabilization dose, changed the timing of the meds and dropped a lot of other supplements.

 

Because of all of the above it is difficult to say what is happening at this time.  If things have suddenly worsened it could well be withdrawal symptoms after such a large reduction.

 

Q:  What supplements did you drop?

 

Q:  Have you been taking a benzo at all during the last month?

 

Q:  How often do you take the BP med?

 

One of the ways that the mods might be able to work out what is happening is for you to provide 3 consecutive days of daily symptom notes, 24 hour period in one go.  See this post for why and how:  Keep Notes on Paper

 

12 minutes ago, AJ716 said:

This leads to other questions:   Could Serotonin be the chemical being dumped?  Could it be norepinephrine?   Or is it something else not related to medication?

 

We work with symptoms here, not chemicals.

[Colonial]

On 10/14/2020 at 5:54 PM, Gridley said:

 

 

One of the other moderators suggested a smaller updose than all the way back to 60mg.  She enclosed a link that showed the the neurotransmitter occupancy at 40mg was almost the same as at 60mg.  If you reinstated to 40mg instead of 60, that might help with the serotonin situation, plus you'd have less to taper off.

 

Posted October 16 (edited)

Despite my discomfort, today has been the best day I’ve had since August 21st.

Posted October 17

Hiya,  Today was also a better day!!

 

Posted October 21

Update on taper and symptoms.

I still have daily episodes every morning.  The severity did increase since my last post (I thought they might),   Withdrawal symptoms come and go.  I decided to introduce a Zoloft taper of 12.5% (as close as I can get to 10% by breaking up the pills). 

 

 Posted October 24

 

At the start I had a couple of better days regarding my episodes (had reduced the Cymbalta by 50%) but when the withdrawal symptoms peaked I went back up and started over with a 10% taper. 

 

Posted Oct. 26

 

 my symptoms during daily my episodes (those haven't lessoned except for a few days around the 16th and 17th after initially reducing Cymbalta by 50%).  

 

Posted 11/5

Lastly, on 10/19 I stopped taking Simvastatin 10 mg (cholesterol med)......., and Mg Glycinate

 

11/7

  Since I went back up to 54 mg for a slower tapering process I thought it likely that I'd revert to feeling poorly again, however not to the extreme that I have been.  In a couple of ways they have gotten worse.  Mostly though I thought my symptoms would generally reflect the reductions since this isn't just about a medication taper for me. With SS one should experience relief when removing the poison. Is that correct?   That's an important factor I initially forgot to make clear.  The episodes are sparked by chemicals being dumped when I wake from a long period of sleep.  If I don’t fall into a deep sleep then I don’t experience an episode.  There have been a couple of times that I needed stayed up all night and I didn't have one. 

Hi!  Just pulling some different posts out to see how everything works together here on your timeline:

It seems by your own experience and by Alto's suspicions toxicity is likely culpable.

 

You have to realize though, the up and down dosing, the moving of the med dosaging and the fact that your dropping BOTH meds, the cymbalta and the Zoloft WILL give symptoms, or change them.  Also, the Mg Glycinate may have been helping the anxiety more than you realized and taking that out could be playing into the mix.

 

Your questions today, if I understand them correctly is
1. "should you not be getting better in a linear fashion equal to the cymbalta drop?  If that is what you mean, yes and no. 

Yes in that it will help, but there are alot of other changes going on in a short period of time that may be delaying the progress.

Your also WDing from Zoloft as well as the cymbalta and changing the times. 

All good long term goals but you have to remember all this has happened in only close to a months time. 

 

As for not having the episodes if you didn't sleep, I didn't have my morning cortisol spike episodes if I didn't sleep either, so you need to remember your episodes can be a result of the entire way your body works together with the extra serotonin, not just because of it

 

I'm not sure where your going with being worried about:    "However I've yet to discover cases that occur in daily cycles like mine do and I haven't discovered any illness that is caused by the waking up process.  That's an important factor I initially forgot to make clear.  The episodes are sparked by chemicals being dumped when I wake from a long period of sleep." 

 

But I think you need to remember the cortisol rise that happens upon waking, in WD, makes symptoms worse for all of us.  Not having an episode because you didn't sleep doesn't mean it isn't still primarily serotonin toxicity, but it does show, how Chessie described it, your in between a rock and a hard place, you either risk the toxicity or risk WD.  

But if you continue dropping BOTH meds by 10% at once on top of adjusting their times, it could be problematic, and then your stuck, as you are now, second guessing yourself and what you thought the original problem was.

 

I think the fact that you repeatedly described being significantly better on lower levels of cymbalta shows that's the med you might want to work on for now, now that you've got them spaced apart. Doing too much at once might be counter productive to being able to really gauge your progress and not throwing in an red herrings.

 

Also, you said today;  "The last two days I didn't take the blood pressure tablets when I woke up (they help with the panic phase) because my blood pressure drops."

I don't know how much those other dosages of other meds are affecting the overall picture, once you start being irregular on those as well.

 

 

 

 

 

[AJ716]

Because of all of the above it is difficult to say what is happening at this time.  If things have suddenly worsened it could well be withdrawal symptoms after such a large reduction.

They aren’t really suddenly worsening.  More like I no longer notice any significant differences (signs of relief) since the very first day medication adjustment.  

 

Q:  What supplements did you drop?

Vitamin D, Chia Seed Oil capsules, and Magnesium Glycinate.  I still take the Magnesium Citrate 200 mg and Melatonin 2.5 mg. 

 

Q:  Have you been taking a benzo at all during the last month?

Oh yes I take Xanax most days.  I’m prescribed .25 mg up to 3x daily but I have done a good job at refraining despite feeling a need to quite often.  Usually I take just take half a pill (.125 mg) in the evening and another .125 mg at bedtime (my mind races horribly).  

I did not take one at bed time last night.  I had a very rare occurrence of extreme fatigue late and it knocked me out.  

 

Q:  How often do you take the BP med?

I don’t have high blood pressure btw.  My heart races during anxiety.

He told me take one in the morning and one at night, as needed.  It varies but never more than twice a day, but always at least once. 

I didn’t take it this morning or yesterday morning despite heart racing because the fatigue phases of my episodes have been extreme as of late.

 

We work with symptoms here, not chemicals.

I understand.  I used that word to explain my episodes because it's almost as if I can feel a chemical being poured into my system with an IV when an episode starts.  Similarly I feel what is like a chemical being released from my system when an episode ends.  It leaves with a sense of relief.

 

Sorry for all of the confusion C-Cat.  Colonel nailed it when he affirmed that my general question is in regards to whether I feel certain the AD medications are causing my episodes.  Since I an no longer feeling a gradual improvement from two reductions, I thought it might mean I was wrong.  He made a great point that I'm up/down like an elevator with several changes occurring so it's not a great time to be expecting to feel a significant change.  And always, ty!

 

Edited November 8, 2020 by ChessieCat
extracted responses from quote

[AJ716]

2 hours ago, Colonial said:

Hi!  Just pulling some different posts out to see how everything works together here on your timeline:

It seems by your own experience and by Alto's suspicions toxicity is likely culpable.

 

Ty Colonel for such an advanced response.  It's very helpful, really!

 

You made me laugh in spite of myself (gratefully I've managed to hang on to some of my sense of humor).  You forgot the post where I said that I could "complicate a bowl of Cheerio's", haha.   Along with my cognitive status not being up par, you brought up much that I need to consider.   Apologies to you/all that my approach has been a bit sporadic and that has interfered with the dialogue. 

 

You said, "It seems by your own experience and by Alto's suspicions toxicity is likely culpable”.  

 

That is an answer to my big general question.  One I wasn’t sure I was being clear about.  All other questions lead to my concern that I’m on the right track regarding what is causing my episodes.  Tapering from AD’s is a huge job and one I wouldn’t have considered taking on at this time if not the cause (or I thought it likely).  A couple of them I wouldn’t have brought up if it didn’t lead to trying to reaffirm my self-diagnoses.  I’m seeing the doctor on Tuesday, btw (if I can make it there). When we spoke on the telephone he seemed hesitant to consider SS, which I find odd considering all the testing I went through has gotten us nowhere.  

I’m going to look over your response again fully to digest it. Then comment a bit more.
Ty!!

[ChessieCat]

7 minutes ago, AJ716 said:

Q:  Have you been taking a benzo at all during the last month?

Oh yes I take Xanax most days.  I’m prescribed .25 mg up to 3x daily but I have done a good job at refraining despite feeling a need to quite often.  Usually I take just take half a pill (.125 mg) in the evening and another .125 mg at bedtime (my mind races horribly).  

I did not take one at bed time last night.  I had a very rare occurrence of extreme fatigue late and it knocked me out.  

 

Taking a benzo inconsistently can cause interdose withdrawal.  The half life is about 11 hours so you should be not be skipping doses, which you did last night.

 

I'll ask the benzo mods what they think about your situation.  To assess this they will need at least 3 consecutive days of daily symptom notes.  Like this:  Keep Notes on Paper

[DataGuy]

Good morning @AJ716,

 

I think you said you'd taken Xanax every day for the past month. Can you give us an approximate schedule of how much you had taken it before that time, as best as you can remember? Did you feel any worse after skipping a dose? 

 

I have read your thread and I for the most part agree with the other moderators. Very likely your morning episodes were triggered by the rapid withdrawal of buprenorphine, which sensitized your nervous system. Withdrawal symptoms like this can last for many months or years, but most doctors are unaware of this. Problems immediately upon awakening, which gradually fade throughout the day, are a hallmark of withdrawal syndromes from a number of psychotropics. Unfortunately, withdrawal like that can be pretty refractory to any sort of treatment and tends to only get better with time. I also agree with Altostrata that the zoloft / cymbalta combo is not a good one and could be contributing to the morning problems. Very hard to say exactly when everything is shifting around, so I think the best thing we can do is make slow changes to one thing at a time and see if they improve your symptoms. By keeping everything else stable while only changing one med, we are much more likely to be able to isolate what is causing any changes to your symptoms. 

 

I do feel that the balance of the problem is withdrawal and the resulting nervous system sensitization, more than serotonin toxicity (although this could still be a problem). The reason for that is that Cyproheptadine competes with serotonin for receptors as an antagonist, and you didn't feel much relief from this (in fact it seems you felt worse). If the problem was serotonin toxicity, this drug likely would have provided some help. Perhaps @Altostrata, @Shep and the other moderators can weigh in to say what they think of this theory. 

 

In the morning, do you have any: pupil dilation, excessive sweating, high blood pressure (I think you said your blood pressure drops?), shivering, diarrhea, muscle rigidity, muscle twitching? Do you have an elevated body temperature or fever?

Thanks,

 

DG

[Colonial]

1 hour ago, DataGuy said:

Problems immediately upon awakening, which gradually fade throughout the day, are a hallmark of withdrawal syndromes from a number of psychotropics.

 

I should have been more clear in my last post that when I was referring to your "daily episodes", which you had immediately upon awakening, I was referring to them in the context of what you described as your "original condition", that you had for 22 months BEFORE starting the WD recently.

 

But as you can see by both what I posted about my also not having my morning cortisol episodes if I did not sleep either, and the fact that those episodes in general are also a hallwark of WD in general, as DataGuy also confirms, is why I suggested it's going to be a little more problematic going forward in correctly assessing if what you think is happening is your "original condition" that you thought could be the toxicity, (and shouldn't you be feeling better by now if you dropped the dose?) and-or WD kicking it.  If you hadn't been having these morning episodes for 22 months straight after taking zoloft and cymbalta both at night and they just started now, you might reasonably assume it was just the WD.

 

The main point is a lot of these issues overlap, so now that you are also actively WDing and changing the timing of the meds, your going to have to retrain your brain as to how you look at the symptoms and be careful not to assign them too closely to any one camp as you did, which started you worrying if your original concern was even legit or not.

 

The good news is, you suffered from the morning episodes for 22 months, and your still here. 🙂 

Moving the dosages apart and beginning the dose decline is only going to continue to lessen the risk toxicity from too much serotonin. 

Just don't panic if symptoms don't progress in the "preassigned paradigm" you assigned for them in your head based on the diagnosis's you attributed as to their origin.

[AJ716]

 

Good morning @AJ716,

Hello Data, ty so much for taking the time to read, respond, question, and evaluate!  It means a lot to receive such attentiveness at this time :) 

 

I think you said you'd taken Xanax every day for the past month. Can you give us an approximate schedule of how much you had taken it before that time, as best as you can remember? Did you feel any worse after skipping a dose? 

I've been taking Xanax regularly since this all began, about 23 months ago now.  That's every day with an average of about .25 mg a day (the lowest prescribed dose).  I alway break the tablets in half and only take .125 at a time - usually twice per day.  I never take one during an episode because it doesn't help that kind of "anxiety" (different from regular anxiety and hard to explain except to say it's worse).   I tend to take half tablet in the evening and the other half at sleep (between 3-5 am).  I don't take it unless I really need to, so occasionally I miss the evening dose.  It's much more rare that I don't need one at sleep.... 

 

Per your last question:  I've never felt worse after missing a dose, assuming anxiety is the symptom.  I've watched it closely because I fear benzo addiction in a big way. There have been times I went 24 hours without a Xanax and was alright.  

 

Very hard to say exactly when everything is shifting around, so I think the best thing we can do is make slow changes to one thing at a time and see if they improve your symptoms. By keeping everything else stable while only changing one med, we are much more likely to be able to isolate what is causing any changes to your symptoms. 

 

Ty yes that seems to be the course I'm going to stick with.  I don't really mind so much if I don't know for sure if it's Serotonin Toxicity,  Withdrawal syndrome, Neurotransmitter damage, or a combination.  What I do want is to be sure of is that the episodes are related to these medications, and not another disease like Cushing's or cancer (the doctor found nothing, btw).  Colonel was on target in deciphering that this is my biggest concern and is why I brought the topic up again.  I'm so beat up that I think I just have one shot left at beating this. 

 

I do feel that the balance of the problem is withdrawal and the resulting nervous system sensitization, more than serotonin toxicity (although this could still be a problem). The reason for that is that Cyproheptadine competes with serotonin for receptors as an antagonist, and you didn't feel much relief from this (in fact it seems you felt worse). If the problem was serotonin toxicity, this drug likely would have provided some help. Perhaps @Altostrata, @Shep and the other moderators can weigh in to say what they think of this theory. 

 

There were other indicators regarding Serotonin Toxicity that you may have missed, or that I forgot to mention.  Also when I re-examined the Cyproheptadine trial I realized it was more complicated.  At first I took just 1/4 of the prescribed dose (1 mg instead of 4 mg) and late at night, at a time that I wasn't episodic (in other words, at night I don't experience the suspected Serotonin excess;). The next morning when I was episodic I took 2 mg of Cypro (1/2 of the prescribed dose) and it completely knocked me out, putting me into a CNS depressed and lethargic state for hours.  My body is much more sensitive to downers.  *It could be that 2 mg isn't strong enough to counter the Serotonin but is too strong for my CNS. Note I was completely out of it after the 2mg dose and in no condition to asses the other symptoms.

 

The doctor has given me other meds over the last 23 months to help with the episodic symptoms and they made me worse.  These are a few:  Metopropolol knocked me out during episode; the occasional Soma helped my muscle tension at night but I started to realize that the next day my episode was worsen, so I finally stopped;  Ondansetron and Metoclopramide for  nausea but made episode worse; Vitamin B Complex made episode worse so I only took it twice.  The latter three increase Serotonin production so those makes sense.  Soma increase anti depressant effectiveness so that makes sense.  Metopropolol is not related to Serotonin, but unlike my Atenolol (beta blocker) it knocked me out. 

 

Alto has stressed her thoughts, that Serotonin Toxicity is the main culprit.  I was/am in agreement but questioning the certainty.  She also indicated that a faster taper might suit me better because SS is deadly, but that course scares me deeply.  I had to weigh everything I know and all the additional tidbits (others aren't as unaware of).  Basically I survived this long with the episodes so if I'm at least reducing the Serotonin etc, I wouldn't get worse and eventually recover.  I don't want to unleash a bandwidth of probable neurotransmitter damage and horrendous wd symptoms that will last indefinitely, if I went quick. This way I know what to expect.  

I understand your general evaluation and believe you're right.  All of you in a sense.  I do need to simplify my medication/supplement intake and not panic over every new symptom or changes in my status (what it means) unless drastic.

 

In the morning, do you have any: pupil dilation, excessive sweating, high blood pressure (I think you said your blood pressure drops?), shivering, diarrhea, muscle rigidity, muscle twitching? Do you have an elevated body temperature or fever?

 

Yes. The morning episodes are distinct and I experience a clump of bad symptoms that occur simultaneously.  Over time they have become more complex and have transitioned into two distinct phases, a hyper stage and hypo stage.  Back in Dec 2018 they were basically just long lasting bad panic attacks - awful flight or flight symptoms. The hypo/fatigue phase wasn't originally part of my episodes but started to occur about 8 months after the episodes started and have gradually worsened.  During the fatigue my blood pressure drops.

 

The symptoms of moderate toxicity from this page describe my hyper stage well  https://www.webmd.com/depression/guide/serotonin-syndrome-causes-symptoms-treatments#1 

From the first list on that page: 

I always have:  Confusion;  Agitation or restlessness;  Headache; Nausea';  Rapid heart rate;  Shivering and goosebumps; Loss of muscle control or twitching muscles;  Changes in blood pressure and/or temperature (mostly very cold but occasional hot).

Only a couple of times:  Diarrhea; Tremor; Heavy sweating
Never:  Dilated pupils; Vomiting; 

 

From the second list (severe) on that page:
Many times: Uneven heartbeat
A few times:  Passing out (not on the first list but this is closest to muscles giving out and me falling over;  never lost consciousness)
Never: seizures;  High fever

 

 

Edited November 9, 2020 by ChessieCat
extracted responses from quotes

[Altostrata]

I'm going to have to ask you to stop complicating your drug schedule. Ordinarily, we want people to change only one (1) drug at a time, including moving them around in schedule. You are tapering Cymbalta, moving Zoloft, AND moving Cymbalta. That's 3 drugs, and your daily drug schedule has a lot of other moving pieces, too.

 

I cannot understand why you would take Cymbalta at midnight, you take the bupe at midnight and atenolol shortly after. We have already explained why it's best not to take 2 drugs at the same time.

 

Also, you have not posted daily drug and symptom notes for more than a week. Help us out, tell us what we need to know. Your situation is already excessively complex for peer support. If you don't do your part, we cannot help you.

[Colonial]

On 11/7/2020 at 5:56 PM, Colonial said:

Posted October 21

  I decided to introduce a Zoloft taper of 12.5% (as close as I can get to 10% by breaking up the pills). 

 

Did you also drop the zoloft as well?

I thought you did but it's not reflected in your medication line.

 

If so, it's another important piece in the puzzle, that was 18 days ago.

My thoughts were based on 2 med tapers, not just one.

 

If you did, remember the mods can't remember everything written in the thread, which it is why it's important to always keep your signature updated.

It's also just as important to let us know if you report your going to do something and then don't.

 

 

[Altostrata]

No more discussion until we see at least 24 hours of daily notes.

[AJ716]

My signature is updated.  I'd be happy to add a short description of my episodes and make additional changes to make it easier.

 

I was not aware that none of the medications should overlap.  Part of the reason I chose to take Cymbalta and Buprenorphine at midnight is convenience (remembering).  I also continually work on improving my sleep schedule and I didn’t want to keep changing my medication times as I did. 

 

A typical day on my current schedule may look like this. Italicized meds are as needed.  Bupe is easiest to move.  I’m open to suggestions.

 

11:00 am - Wake.
11:15 am   Buprenorphine 4mg.
12:00 pm   Atenolol 25 mg.
2:00 pm     Zoloft 100 mg.
6:00 pm     Magnesium 150 mg.
7:30 pm     Xanax .125 mg. 
12:00 am   Buprenorphine 4 mg.
1:00 am     Atenolol 25 mg.
3:00 am     Melatonin 2.5 mg
4:00 am     Xanax .125 mg. 

 

Thanks

Edited November 11, 2020 by AJ716
Prematurely entered.

[AJ716]

I forgot to include Cymbalta on the list in my previous post. 

12:00 am   Buprenorphine 4 mg.

12:00 am   Cymbalta 48.5 mg.
1:00 am      Atenolol 25 mg.

 

Additionally:

On 11/8/2020 at 8:10 PM, Altostrata said:

I'm going to have to ask you to stop complicating your drug schedule.

 

It didn't escape me that the idea of possibly incorporating another med move is contradictory to what Alto told me.  However I was also faced with the following criticism:

On 11/8/2020 at 8:10 PM, Altostrata said:

I cannot understand why you would take Cymbalta at midnight, you take the bupe at midnight and atenolol shortly after

 

I thought it best to try to address that productively as opposed to over-explaining "why". That may have appeared argumentative and like I was unwilling to work at fixing the schedule to the best of my ability.  Not true. I was misunderstood at least twice since joining and cut short as a result.  It's unpleasant and I want to avoid it. 

 

There was no response to the post so I'm assuming the signature is satisfactory and that right now a conflict with taking Cymbalta and Bupe at midnight poses less of a problem than another medication move.

 

Lastly:

Regarding the daily symptoms notes it frankly is too hard to do them every day.  It pains me to admit that.  Sincerely it's my problem and I'll bite the bullet.  Can I just not ask for advice about symptoms unless I put up my notes for a couple of days?