EagleDove: Help with which drug to taper first

[Eagledove]

Hi, I am researching how to taper mirtazapine but I have been holding my benzo taper for over a year as I could not handle ws. I don't know if I taper both at the same time or which one first. I gave in and went on mirtazapine due to sleep deprivation but the drug is causing akathesia, tremors, histamine issues, fatigue, chronic pain and I'm not sleeping much. I was tapering my Diazapam at .05mg every 2 weeks and couldn't handle it. Compounded liquid was  rougher than capsules so I am holding at 7.9mg compounded capsules. The doctor cuts a 15mg pill in quarters for my 3.75mg sandoz-mirtazapine. I don't believe this to be an accurate method? I am looking at compounded capsules for the taper. I can not do a self-taper based on my prescriptions. So I must get the doctor on board with best practices and he will not let me self taper by making my own at home.  He seems to only allow a cut and hold every 2 weeks. As my Sandoz-mirtazapine is not available in powder the compounding pharmacy would be using tablets reground to powder to make the capsules. Is this an acceptable practice? I appreciate help with this as holding where I am right now is as bad as tapering.

Edited January 13, 2023 by manymoretodays
name to title

[manymoretodays]

Hi there Eagledove and welcome,

 

What we promote here is a harm reduction model for tapering.  Which is explained more here:

Why taper by 10% of my dosage?

 

And then we have got a tapering topic for mirtazapine, which should help quite a bit too, with dosing and getting the non-standard doses needed for a mirtazapine taper:

Tips for tapering off mirtazapine(Remeron)

 

Are you unable to do your drug dosing for yourself at this point?  I'm just wondering why your doctor is cutting tablets for you.  And yes, definitely as you taper mirtazapine you will need a better method than just pill cutting to be accurate.

 

See also:

Taper more than one drug at a time?

Taking multiple psych drugs? Which drug to taper first?

 

We also have a Benzo tapering and recovery topic for members only:

Benzo tapering and recovery

For right now, you might just wish to read on some of the top pinned topics there, but stay right here in the main area with your now Introduction topic for help and communicating with us.

 

Tell us a bit more about the "akathisia"  and all the other symptoms you've experienced with mirtazapine.  I'm interested in when they occurred, the symptoms, as if it was related to a dose change in either the Valium or mirtazapine?  If you recall.  Just do your best.

 

When do you take your current drugs now.......the time of day?

 

Okay and thanks.  Let's just gather a bit more information at this point and find out how we might best help.  Are you hoping to taper off drugs completely at some point?  And have you used our site before, as a member?  I'm not finding anything with your ID as yet, but just wondered.

 

Welcome EagleDove.

 

Love, peace, healing, and growth,

moderator manymoretodays(mmt)

 

 

 

 

 

[Eagledove]

Thank you for your response to my post. I’m sorry for the length of my response but, between my attempt to think clearly and all this research triggering me this takes a long time as I’m afraid of making more tapering mistakes. My fear of not telling my whole story makes me afraid. Your questions to clarify what is possibly happening in my reactions to medications and the tapering there of were hopeful questions as I seek out help to take this information into the best strategy to continue the road to get off all medications as my goal.  In case it is helpful there are a couple of medical observations I would like to make. Any medication, and minor use of recreational drugs and alcohol have all given me side effects throughout my life, anxiety and sedation being the most predominant side effects. Histamine reactions whether food or medications that alter my ability to clear histamine create high anxiety and anxiety surges throughout the body as well. My reaction to anesthesia is difficulty waking up. Based on this information I consider myself a slow metaboliser who has poor detox pathways (Assuming I am understanding the science?) I understand this to be a potential cause to having such severe withdrawal symptoms. Although looking at the whole of my psychiatric medication history I also see the harm of kindling as a major factor in withdrawal symptoms and many blunders! And Brand really does matter with me as I am so sensitive to dosage changes, usually taking 6 weeks of severe withdrawal symptoms of insomnia, anxiety, fatigue, and physical pain when switching over to a different brand when pharmacy changes without consent.

My medication history as follows based on having a lot of memory difficulties:

1977 (age 15) Ativan 3x1mg/day for Max. 3 months. Just stopped taking due to high sedation.  Reason given for high stress abusive living environment.

2006-2016 Ativan and/or Lorazepam 1mg nightly for Insomnia side effects muscle twitches, increased PMS, digestive system slowing, chronic fatigue, chronic pain, and anxiety. I did not understand inter dose withdrawal or tolerance. I believe subconsciously as the effects of the medication lessened to help with sleep and the daytime anxiety increased, I continued the medication to get some relief from anxiety each night.

2013 Tried probably 3 different AD psych meds, I do not know which, to overcome the anxiety which the doctors did not recognize as being from the Ativan. Each created anxiety and were tried for 2-3 months each and stopped without taper.

2014 Tried a 10% reduction of compounded pharmacy capsules Ativan to taper off with little knowledge. Went back to 1mg after 1 month due to anxiety and illnesses as stated next.

2014-2017 Bedridden for these years as I developed SIBO-C which made me gravely ill.  Nonstop symptoms of migraines, nausea, burning skin all over the body (no fever), high anxiety. My intestinal tract has not recovered, and I remain in dysbiosis with a vagal nerve which responds with high anxiety anytime the bowels try to move. Many homeopathic remedies were tried which all made me more ill. Between my bodies inability to take supplements or medications and the interactions they might have had with the Lorazepam I was one sick girl.

2014-2022 Followed Specific Carb Diet (SCD) to help digestive issues. Low Histamine foods. My tolerance to any food was down to about 6 foods of least reaction.

2015-2016 Went back into my medical records to discover I had been anemic or low iron for at least 20 years. My anxiety was now sky high and I was in poor health; doctors suspected Premenstrual Dysphoria Disorder (PMDD). I had several Iron Infusions which made me extremely ill and did not help with fatigue.  I was on Sumatriptan 25-50mg as needed for migraines, this caused worse insomnia. On Tranexamic Acid 500mg 4xday max. or as needed to clot blood. Mirtazapine, time and amount unknown. Sertraline 25mg, time unknown. And finally, Synarel for 18 months to lower estrogen levels. None of this helped the PMDD, assuming I had this condition. All medications would have been stopped abruptly without taper.

December 2016 Had a minor surgery and trouble waking from surgery. I was released from hospital unable to walk on my own due to still being heavily sedated and was instructed by the nurse to stop my Lorazepam. 4 days later I called the doctor who told me to reinstate my medication. I started taking an extra 1mg of Lorazepam as needed to get to medical appointments for the remainder of December.

***From this event on I have never stabilized on any of the medications I am put on.

I have remained mostly bedridden/couch ridden, and house bound to this day. From either SE or WS. Tapering always leaves me unable to function and have a life.

January 2017   Having done some research in 2016 on benzo tapering I sought out a compounding pharmacy to taper my 1mg Lorazepam. He sent me to a doctor who told me to go cold turkey that tapering was unnecessary and he would not prescribe for me. So, I stopped the medication and for 3 days my family watched over me continually as I screamed and cried with extreme terror, anxiety and psychosis.  I agreed to go to the emergency room on day 4 and was put on 10mg Diazepam to prevent medical harm. I was informed I was an addict and not physically dependant and needed to go to a detox center.

February 2017   Unable to make decisions for myself at that point and living alone, the only psychiatrist I could find taking new patients put me on Diazepam 25mg divided evenly into a day and night dose and Seroquel 25mg taken nightly for insomnia and PMDD related anxiety; I think those were his reasons.  I immediately became so overly sedated I could barely move or look after myself. My symptoms included extreme anxiety, sensitivity to light and noise, chronic pain/fatigue, slow digestion but with an overactive vagal response when bowels moved, intermittent burning skin, night terrors which continued into the day, tremors, constant vertigo and vision issues, lack of strength and coordination, memory issues, trouble concentrating, muscle twitching, emotions numb-depersonalization?,  always crying, horrible fear of loneliness, irrational thinking (I knew it was irrational and almost like I was looking from the outside in saying these aren’t my thoughts), ruminating. I believe the anti-psychotic was making me psychotic but couldn’t be sure it wasn’t the benzo.

*Some where in the timeline I switched doctors and prepared myself to taper. Studying the Benzo groups led me to believe I needed to taper the benzo first. I retrospect I have no doubt the Seroquel was the worst culprit.

Jan-Aug 2020 I started tapering my Diazepam 25mg to 13mg by cutting pills. Taking 2 even doses a day as best I could based on what mg’s of pills I was being prescribed. All WS remained except I was much less sedated during the day the further I tapered. In looking back at my math the first month was a 34% cut and by August I was down to a 5.6% cut. I think. My notes are not as good as I thought they were as I was doing the math myself. And I believe the Seroquel was the med giving me a lot of my severe symptoms.

September-December 2020 switched to compounded liquid taper. Held at 13mg for 1 month. 5-14% monthly reduction taking 2 doses a day. Tapered down to 11mg. All WS remained. Again my guess Seroquel SE.

December 2020-June 2021 Tapered from 11mg to 8.8mg. 2 even doses a day. Not sure of the % of taper per month.

July-October 2021 New doctor and pharmacy that specialized in opioid addiction and tapers. They said they could help with the benzo taper, but it turns out they had little knowledge and the pharmacist did not as promised work closely with me. They would let me hold if I needed.  I switched over to Diazepam powder with rice filler capsules, held for a month at current dose and did only .05mg reductions as I was in major PTSD and WS with the ongoing SE of the Seroquel and I could barely handle not harming myself to stop the non stop onslaught of illness and withdrawal since 2014. Dosing was always once at night for Seroquel and 2 even doses of Diazepam 1 day and 1 night.

October 2021 With all previous WS these new ones started as I believe I hit tolerance with the Seroquel and all my bad tapering of the benzo caught up with me and I started to sleep no more than 0-2 hours at night and was being brain zapped repeatedly. Plus I started having sever tremors non stop deep in my gut to all over my body, my chronic pain which I guess is often an electrical nerve feeling and not just muscular was extreme. Sleep depravation set in and I CT’d off as my husband and I knew if I went to the hospital they would give me more drugs. I spent the next 5 months not trying to kill myself from the sleep depravation, extreme tremors inner and visual, left sided face pain as my check bone muscle was always contracted, surges of terror and anxiety upon any waking, I have been told this might be cortisol or adrenal rushes? I think I was experiencing akathisia running around the house in terror not wanting to be touched at times, taking hours to move from bed to couch or go to the bathroom due to overwhelming terror, bursts of anger, body jerking, flushing, ruminating increased severally. I became so fatigued I could barely look after myself and I dropped down to 94 pounds at 5’4” tall.

February 2022   I started to not be able to tolerate the 6 foods I had been eating for the last 7 years and I started on the Gut and Psychology/physiology diet-GAPS as I was so malnourished. I was starting to get energy but not gain weight yet. I still had most of my symptoms including akathisia.

April 2021 Due to much sleep depravation, PTSD and WS I gave in and went on 25mg Sandoz-Mirtazapine for sleep. Initially I slept but with night terrors and surges upon waking. I started waking in the middle of the night often as my bladder was full and kept waking me up. A new condition for me. My anxiety started to rise as it does on AD’s. But my thinking was I could stabilise and continue my benzo taper if I can get sleep. About a month later my chronic pain and fatigue returned which had disappeared with the diet.

December 2021 Looking back when I started the Mirtazapine my histamine reactions to environmental and food sensitivities increased. I started to gain weight thinking it was the diet, but my GAPS practitioner believes it is the AD and also the reason I am making little headway with the diet and healing. I started having an increase in night terrors, akathisia, and tremors/body jerking. I started only sleeping 0-2 hours a night and was bedridden for a couple weeks in December.

January 2023 At this point I have had a slight improvement of sleep to 4 hours a night best case scenario and no ability to get back to sleep. It seems I am very unlikely to stabilise as I have been holding the Diazepam taper since October 2021 and the Mirtazapine has, I would think, been giving me trouble since day 1 and I am becoming tolerant to it sleep wise. I need to start a taper before I get as bad as I did with the Seroquel. Plus, the doctor wants to increase my mirtazapine. I believe the benzo is not the worst culprit and that I need to taper the Mirtazapine?

ANSWERS TO YOUR OTHER QUESTIONS

***The doctor is splitting my 15mg pills into quarters because he feels it is a sound practice. So, he quarters 7 pills each month to give me 28 days of 3.75mg nightly. With the brand I am on it is only available as 15mg pills, with 1 score line, for the lowest dose in Canada. He repeatedly insists this is a safe drug and easy to just quick taper off. He wants me to taper the benzo.

***I am currently holding my cp capsules of Diazepam at 7.9mg a day split evenly day and night. And Mirtazapine 3.95mg nightly. I am on a low histamine probiotic and a low dose of HCL with Betaine.

***Yes, the goal is to get off meds completely.  

***I have spent some time on your website in the past and currently found you again through the Facebook group Mirtazapine: Support, Withdrawl, Recovery

Assuming I am thinking correctly I need to taper the AD before the Benzo? I can only try to convince the doctor to allow me to compound the pills into capsules, hold for a month at current dose and start maybe a 3-5% reduction a month. My best guess at the moment.  I like the idea of the Brass-Monkey Sliding Scale but compounding is to expensive for this. And as I have lost control of doing this myself at home because the doctor will not let me and/or I can not get the doses I need to make my own liquid and taper and hold as I need I think I could be in for a long rough ride. I am terrified and do not want to do this anymore but I must hope at some point that SE and WS will not always have me stuck alone in the house. At 60 years of age it’s hard to hope for a life…

I am praying I can get some help with this because there is no one else to help me think my way through this.

[Altostrata]

Hello, @Eagledove I am sorry for your long history of perhaps overlooked diagnoses and overprescribed psychiatric drugs.

 

Exactly what drugs are you taking now at what times o'clock and dosages? Have you made any drug changes since April 2022?

[Eagledove]

HI,

I am taking:

Diazepam 3.95mg 11am and 3.95mg 10pm

Sandoz=Mirtazapine 3.75mg 10pm

I have not made any drug changes since April 2022

 

Thank you very much...

[manymoretodays]

Hi EagleDove,

Okay and thanks.

How are you getting the current Valium doses?  i.e. weighing, liquid, etc?

Was the starting dose of Mirtazapine in April of 2022 3.75 mg?

 

Would you do a drug interaction check please and then either copy and link us to it, or copy and paste the results in a reply.

Drug.com is an excellent site for this:  https://www.drugs.com/drug_interactions.html

Include all your drug in that.  Thank you.

 

And yes, usually we do recommend tapering the more activating/accelerating drug first.

At the dose of 3.75 mg, your mirtazapine is likely more sedating or "brake" like.

So I am thinking you are essentially on 2 brakes now.

 

On 1/19/2023 at 5:06 PM, Eagledove said:

And as I have lost control of doing this myself at home because the doctor will not let me and/or I can not get the doses I need to make my own liquid and taper and hold as I need I think I could be in for a long rough ride. I am terrified and do not want to do this anymore but I must hope at some point that SE and WS will not always have me stuck alone in the house. At 60 years of age it’s hard to hope for a life…

I am praying I can get some help with this because there is no one else to help me think my way through this.

 

Do you have options to control your drug intake(s) and tapering?  It isn't sounding too much like your present doctor is partnering with you and that is concerning to me.  Can you get another doctor to prescribe?

How to talk to a doctor about tapering and withdrawal and what to expect?

Start with the first post ^ and this may be helpful, in understanding how to work the system, to your own best healing.  I hope so.

 

It sounds like it has been misery for some time now.  Many do work through tapers at your age with success along the way, in the way of improvements.  So don't give up.

 

Why don't you............ along with checking interactions and then posting those, do a few days worth of NOTES/daily drug and symptom logs.  Here's the how to on that, and what we like to see when you post those:

Recording drug schedule and symptom pattern

Open the quote box in the first post ^, and you'll see more and a sample note

Get the date, and then put times going through a 24 hour period on the left.  On the right list your drugs, all of them, and any supplements, by name, and dose.  Also to the right of the time, note any symptoms that you currently are having with brief descriptions.  Note your sleep as well.

 

This will help us help you to get a plan going for a taper, and decide what drug to work on tapering.

 

Meantime.  Hang in there.  And thank you for sharing all that you did in your previous post.  I hope that helped you as well.......as sometimes getting ones story down on paper, or online, does really help.  Good to hear you have been working with the mirtazapine group on FB too.

 

And best.  L, P, H, and G,  stay with us,

mmt

 

Edited January 21, 2023 by manymoretodays
additional on Notes

[Altostrata]

If your goal is to go off both mirtazapine and diazepam, it's best to taper only one at a time, or you're a high risk for withdrawal insomnia. You also want to be able to control the taper by observing the results of a decrease. If you decrease both at once, you won't know which drug is causing the withdrawal symptoms.

 

On 1/12/2023 at 2:19 PM, Eagledove said:

So I must get the doctor on board with best practices and he will not let me self taper by making my own at home. 

 

When was your last reduction in mirtazapine and what was the change in your symptom pattern after that?

 

There are no best practices in drug tapering, that's why this site exists. Doctors make up their own methods.

 

Suggest you have a heart-to-heart with the doctor about how you're a grown adult, not an infant; the Canadian medical guidelines encourage shared decision-making between doctor and patient; and because of your difficulty in reducing your drugs before (resulting in withdrawal insomnia), you prefer to taper off mirtazapine and diazepam more gradually. See How do you talk to a doctor about tapering and withdrawal?
 

[manymoretodays]

Updates EagleDove?

Questions?

[Eagledove]

Hi, thanks for following up with me. I am just working on the symptom journal and will post it after today I think. It will be 5 days of logging after today. My symptoms have finally started to improve after a bad 3 months wave so the tracking will not show the worst of it. Grateful for the break ❤️.

[Eagledove]

Hi, manymoredays. Here is the information you requested. TIA

 

1.  My Diazepam are compounded 3.95mg capsules using powder and rice filler.  1 dose of 3.95mg at 11am and 1 dose of 3.94mg at 10pm. I have been holding the taper of this drug since October of 2021. I was tapering at a rate of .05mg and could barely handle the constant withdrawal. But in hindsight I believe the 25mg of Seroquel I was also on at that time, was really the worst offender and causing me Major SE’s.

 

2.  In April of 2022 I started Mirtazapine at 3.75mg and have never tapered or changed the dose. It is issues as a 15mg pill which has already been quartered for me, so not a consistent dose. It was given for insomnia.

***Taking a look back at my history and SE that started from this drug this is what I have observed:

-Major increase in histamines even though I am on a low histamine diet-GAPS Flushing, Hot, Cold, Nose dripping, Anxiety, pain fatigue

-Major increase in fatigue and chronic pain

-Full bladder waking me up at night. I have not increased my fluid intake or ever had to get up to empty before this. Then I  have trouble falling asleep again. Fatigued but awake.

-AD related Anxiety – I can’t really explain other than it feels different from benzo anxiety or self-induced anxiety.

-Fear/Terror/Cortisol Rushes or Akathisia??? upon waking in the morning and not subsiding until mid afternoon most days. Not upon waking in the middle of the night though.

-weight gain 13 lbs. Feel hungry even after eating at times

-Heat intolerance has increased

-Concentration and memory issues worsened

-Tinnitus-getting louder by the day!

 

3. Supplements I am taking.

-Probiotic - Low histamine 75,000billion CFU’s. Once daily.

-Betaine HCL with Pepsin – 125mg Betaine Hydrochloride/11.75mg Pepsin. Twice a day.

 

4.  Drug Interaction Diazepam and Mirtazapine

https://www.drugs.com/interactions-check.php?drug_list=862-0%2C1640-0&interaction_list_id=183545937&professional=0&types%5B%5D=moderate&types%5B%5D=food#filterSection

 

 

5. I do not have another doctor who will taper or prescribe. He is making my compounded Diazepam caps and allowing me to hold right now and if I can get the pharmacy to not cut my 15mg pills of Mirtazapine I’m thinking I can split it in half on the spice line to get 7.5mg to use as a 2 day dose to make liquid??? I did try tapering with CP liquid Diazepam in the past and did not do well with it. But I am seeing a lot of talk about CP prescribed liquid causing people issues between new bottles or batches. If I make my own maybe it won’t be bad. Not looking forward to the crossover though as that usually sucks for me.

 

6. Symptom Pattern Journal ***Rated as zero no symptom to 10 severe G=Gradual S=Sudden

 *** Insomnia and Akathisia and intensity of symptoms have improved in the last week so the tracking doesn’t show what has been happening since October 2021 when Akathisia, Insomnia, Night terror dreams, Inner Tremors/Fluttering mostly abdomen area and Tinnitus really kicked in. ***

Day 1 shows a more realistic look at what has been going on.

 

***Inner Tremors/fluttering and Tinnitus are always present at a score of 7 -   I will only make a note if there is a change.

 

Day 1

230am  Woke with full bladder

3am  Fell asleep

6am  S/All 7’s  Duration All Day-  Woke with full bladder, Panic surges, intestinal cramps, fatigue, full body pain, vertigo, light headed, vision hazy, left side face pain/cheek bone clenching, headache with eye pain like a vice grip around head from eyes up. Very hungry today.

9am  Got Up

9am  Probiotics 75,000 billion cfu’s

930  S/5  Duration ½ hour Breakfast Runny nose

930am  HCL 125mg/11.75mg pepsin

11am  Diazepam 3.95mg

1130  Snack

12pm  G/8 Very sedated feeling, confused, poor concentration. UNUSUAL SEDATION REACTION

130pm  S/3  Duration 1/2 hour

300pm  Ate  S/6  Duration 1 hour  Flushing, less hungry, less sedated

530pm  Dinner  S/3 ½ hour  Runny nose

530pm  HCL 125mg/11.75mg pepsin

830pm  Ate  S/3 15 minutes runny nose

10pm  Diazepam 3.95mg 

10pm  Mirtazapine 3.75mg

1130pm G  Fell asleep

 

Day 2

3am  woke full bladder, couldn’t fall back to sleep

7am  Fell asleep  Light sleep with disturbing dreams

8am  S/7 until 6 pm Woke Panic, Anxiety, fatigue, pain, Tremors, left face pain, vertigo, hot/cold, head pressure, headache vice grip from eyes up.

9am  Got up

9am  Probiotics 75,000 billion cfu’s

930am Breakfast  S/4 15 minutes  runny nose

930am  HCL 125mg/11.75mg pepsin

1100am  Diazepam 3.95mg

1230pm  S/4 15 minutes  runny nose

2pm  S/9 4 hours  Went shopping – sweating, flushed, nausea, vertigo, feel faint,

3pm  S/9  2 hours  Tinnitus increase, anxiety increase, hot/cold, crying, laid down

5pm  Got Up  G/7  Feeling a bit better overall, tinnitus and anxiety lower

630pm Dinner

630pm  HCL 125mg/11.75mg pepsin

700pm  G/7 body twitches

730pm  S/7  Head pressure, flushing

830pm  G/8  Headache, hot, anxiety increase

915pm  S/8 Tinnitus increase

930pm  Diazepam 3.95mg

930pm  Mirtazapine 3.75mg

1030pm  fell asleep

 

Day 3

230am woke  full bladder

300am feel asleep

6am  G/6  3 hours woke  much less symptoms overall BUT hot and cold all day

9am  S/7  Got up fatigue, light headed, headache

900am  Probiotics  75000 billion cfu’s

930am  S/4 15 minutes breakfast

930am  HCL 125mg/11.75mg pepsin

10am  G/8 tinnitus increase

11am  Diazepam 3.95mg

1130  S/4  snack 15 minutes  runny nose

1pm  Went for Visceral and Sacral Cranial Massage

245pm G/5  headache improved

3pm  S/4  15 minutes  runny nose

4pm  G/7  headache, eye pain increased

6pm dinner

6pm  HCL 125mg/11.75mg pepsin

7pm  G/5 headache, eye pain, vertigo ,tinnitus improved

9pm  S/4  15 minutes  snack

10pm  Diazepam 3.95mg

10pm  Mirtazapine 3.75mg

11pm  fell asleep

 

Day 4

120am woke  full bladder

2-7am  possibly some periods of light sleep 

7am  Got up but  Went back to bed immediately due to all over body pain/fatigue G/8

 S/5 vertigo, anxiety much improved today. 

G/8 Very lethargic and arms twitchy/need to move

930 Got up again   

930am Probiotics 75000 billion cfu’s

10 am  S/4  10 minutes breakfast  runny nose

10am  HCL 125mg/11.75mg pepsin

1015am  S/5 15 minutes  involuntary arm jerking

12pm  Diazepam  3.95mg

1pm  G/6  Energy improving, less lethargic

1pm  Luch

230pm  G/7  very sleepy

445pm  S/7 1 hour   Anxiety spike

630pm  S/4 1o minutes  Dinner  runny nose

730pm  S/6 until I fell asleep at bedtime  Anxiety spike, flushed, fast heart rate

1030pm  Diazepam 3.95mg

1030pm  Mirtazapine  3.75mg

11pm  fell asleep

 

Day 5

3am woke  full bladder

630am  fell asleep

830am  S/7  ½ hour   woke up  panic/anxiety surges 

               No vertigo, 5-light headed, 3-tremors, 6-tinnitus

10am   S/7  ½ hour  panic/anxiety surges

             S/8 arm/shoulder pain  But more energy and clarity

1015am  Probiotics 75000 billion  cfu’s

1045am  S/3  15 minutes   breakfast  runny nose

1045am   HCL 125mg/11.75mg pepsin

1145am  Diazepam  3.95mg

12pm  S/6  light headed while driving

330pm  S/4 15 minutes  lunch   runny nose

330pm HCL 125mg/11.75mg pepsin

8pm  S/8 Dinner  Tremors increased

1030pm  Diazepam 3.95mg

1030 pm Mirtazapine  3.75mg

11pm  fell asleep

 

[Eagledove]

Hi, altostrata

I have given more information to the questions manymoredays and you asked that I think will answer your questions as well in my most recent post.

My mirtazapine since starting it in April 2022 has been 3.75mg without any dosage changes.

 

Sorry if I am not replying to individual posts correctly as I am technically challenged 🐵

[Altostrata]

You're taking 3.95mg diazepam between 11 a.m. and 12 noon?

 

You get a runny nose every day after you taking those probiotics?

 

It appears to me that the earlier 3.95mg diazepam dose is too high and you are getting either a sedation or paradoxical reaction. @Shep?

[Eagledove]

I am getting odd SE over the last week.

 

Normally the daytime Diazepam doesn't make me sleepy, so this is new. But I agree it is sedating me. 

 

One of the questions I have if it is established that I should taper the Mirtazapine first, is should I then consider possibly moving some of my daytime dose of Diazapine to my bedtime dose? Unfortunately the compounding from the CP of making 2 different doses of capsules would double the cost.

 

Since starting benzos and Mirtazapine  I always get the runny nose while eating. Whenever I eat I get histamine reactions. Since starting the mirtazapine histamine issues have really escalated. Thus the runny nose, which is lasting a much shorter time than usual right now.

 

So I'm not sure the probiotics are the issue as I take it only once a day and the runny nose is not new. I started those about 4 months ago with a very tiny dose and have built up slowly with long holds at each increase. My gut is starting to move a bit now as I have dysbiosis. But of course I don't know for sure if they are causing a problem.

 

Thanks 😊

[Altostrata]

If you are currently experiencing an adverse effect of diazepam, why would you not want to lower the dose first?

 

When was the last time you changed your diazepam dosing? Have you had covid?

[Eagledove]

I have been holding my taper of Diazapam since October of 2021 at my current dose of 3.95mg twice a day. I was doing CP decreases of .05mg every 2 weeks and could not handle the withdrawal. 

 

When my Seroquel SE became completely unmanageable and I CT'd myself in a state of physchosis from the drug, I spent the next 5 months trying not to harm myself with akathesia and sleep deprivation. I gave in and went on Mirtazapine for sleep. I was in a very bad state with no one to help.

 

 I was trying to get healthier and holding the benzo taper as I was down to 94lbs and very ill and I finally have realized I am focusing on the wrong drug again! The mirt SE's are killing me.

 

Looking back at things I can not believe I was so locked into believing I had to taper the benzo before the seroquel. It was such a horrible 5 years on that crap. 

I now find myself looking back again at how bad the Mirtazapine is effecting me. 

 

If I am understanding correctly that only 1 med at a time should be tapered my thought is to get rid of the Mirtazapine. Yes I would love to be off the benzo but I have no quality of life from the mirt. And am super sensitive to withdrawal.

 

I'm just trying to get this right as best as I can this time around and am very grateful for your help...

 

Thank you...

[Altostrata]

Which symptoms do you think are due to mirtazapine?

[Eagledove]

Taking a look back at my history and SE when I started Mirtazapine this is what I have observed:

-Major increase in histamine intolerance even though I am on a low histamine diet-GAPS. SE of histamine for me seem to be Flushing, Hot, Cold, Nose dripping, and increase in High anxiety, pain, and fatigue I can't push through much of the time. Worsened constipation and overactive Bowels at times which bring on severe anxiety and inner Tremors and external Tremors. Weakness.

-Full bladder waking me up at night. I have not increased my fluid intake or ever had to get up to empty before this. Then I  have trouble falling asleep again. Fatigued but awake through the night..

-AD related Anxiety – I can’t really explain other than it feels different from benzo anxiety or self-induced anxiety. Anytime they tried me on an AD in the past it gave me anxiety.

-Fear/Terror/Cortisol Rushes or Akathisia??? upon waking in the morning and not subsiding until mid afternoon most days. Not upon waking in the middle of the night though.

-Inner Tremors in torso doesn't stop.

-weight gain 13 lbs. Feel hungry even after eating at times

-Heat intolerance has increased

-Concentration and Memory issues worsened

-Tinnitus that is getting louder by the day. I have never had this before.

 

As best as I can tell or recall this is what I see. I just know I don't want to repeat the same mistake I made with the Seroquel in being so tunnel visioned about getting off the benzo first. The Tinnitus, Tremors, and waking because of the bladder, plus not sleeping much as the mirtazapine doesnt help much anymore with sleep.  I'm wearing me out. The histamine issues have me on only 4 foods now.

 

I am in bad akathesia today and am not thinking very clearly. Crying and panicking about how I will get through this. Not a lot of hopeful thoughts right now I'm  afraid. 

 

As always thank you...

[Altostrata]

I don't know if those symptoms are from mirtazapine, you've had a lot of other things going on.

 

What do you mean by "akathisia"? Does this occur often? It does not appear in the daily notes you posted yesterday.

 

You may be allergic to your probiotics. 

[Eagledove]

Altostrata,

When I did the symptom journal I think I made mention that I was having a very different week with some symptoms better and some worse. I had 2 1/2 days of severe symptoms and 2 1/2 days of lessened symptoms for the most part. Then things really hit bad this past Saturday with what I am calling akathesia which leads to severe panic, terror, high anxiety, extreme agitation, irritability impatience,separation anxiety as I don't want to be alone and don't feel Safe, rumination and too focused on symptoms and how I will resolve them. I feel a need to run around the house crying and screaming and spend my time trying not to do this as much as possible. I pray to die to make it all stop, not because I want to die. My Tremors internal and external/visible increase. Jerking of mostly gut crunches and arms increase and I can't stop twitching without much focus. Sensitive to light and sound. Memory and thinking become really hard. The knowledge that this is all stupid and ridiculous but I can't get it under control until it passes. I know the terror isn't real but I can't stop it. I don't know if this is akathesia or very high panic/anxiety but it is very much terror.

It started with taking seroquel which came with night and day Terrors with very little relief. But I was so sedated with bad Vertigo, balance and vision problems I didn't know what to do as it did knock me out for sleep. Of course when I CT off seroquel the akathesia was sky high for 5 months. Everyday I came close to suicide. 

 

When my vagus nerve is over stimulated by normal to fast bowel movements this akathesia/panic/high anxiety flares up for days.

 

Without a doubt the probiotics could be an issue but with all my symptoms I can never seem to pin point the real culprit. If it is food or having had no sleep. They are a 6 strain low histamine brand with no extra ingredients. Everything is always guess work. 

 

The only other thought that occured to me in regards to if mirtazapine is a big issue for me is thinking back to February 2021.  I went from 8 years of eating about 8 foods on the SCD to starting the GAPS diet. I had more energy than i had in years and was feeling hopeful overall. I discovered I was having histamine issues with the foods I had been eating as I implemented new nutrient dense food which seemed OK. The akathesia was still very bad and horrible sleep deprivation.  

When I started on mirtazapine for sleep I lost my energy and began struggling with histamine reactions to all foods. Since then it has been a juggling act starting and stopping foods to try and figure out the culprit.

 

It became obvious my goal of gaining g some weight and improving my health a bit before continuing to taper was not going to happen. So I joined the Facebook group Mirtazapine, support, withdrawal, recovery.

It is my understanding that you started this group??? I'm assuming/hoping their guidelines are in line with yours? The thing I noticed was the high incidence of histamine intolerance issues due to H1 histamine blocker and DAO inhibitor. And secondly maybe from this site? was the fact that the benzo groups are always pushing the agenda remove the benzo first.

 

I then started thinking I was correct that the seroquel should have been the drug I was tapering before the benzo and that since starting the mirtazapine my histamine issues, energy and feeling hungover in the morning, cortisol surges were new symptoms. I was making headway with the new diet and then i couldnt get anywhere but worse since the mirtazapine.

So thus my going in circles trying to not cause my own continued suffering of which drug to taper first. And since December 2021 the night terrors appear quit often again and I'm not sleeping much. The help it was offering is not there.

 

Each statement or question you pose helps me to think back about the specifics of my symptoms as they came or went, eased or worsened. Yes my biggest fear is to repeat my mistake of the seroquel horror. From day one it was hell but I wasn't brave enough to say NO, I want off this one drug; before the benzo. With the mirtazapine the SE seem horrible effecting me with not having any non reactive foods.

I feel like I am up against a wall again knowing I need to restart tapering but yes, feeling like the mirtazapine is causing a lot of havic. 

 

Sorry I just seem grid locked...

 

 

[Altostrata]

You started Ativan in 2006. What was the reason you took Ativan every day for 10 years?

[Eagledove]

I had insomnia and the doctor gave me Ativan for it. I developed fatigue, pain and twitching and the insomnia required the medication of course as I had now become physically dependant. The doctor had no explanation for my health issues and wanted me to stay on the medication.  There was a definate point where I became tolerant and as interdose withdrawal of a short acting benzo gave me anxiety during the day I subconsciously was afraid to give it up as it provided some relief when I took it. I was never informed of the dangers and it was never connected to the symptoms I was having.

 

[Altostrata]

You've been on one benzo or another almost continuously since 2006?

 

On 1/30/2023 at 1:09 PM, Eagledove said:

It is my understanding that you started this group??? I'm assuming/hoping their guidelines are in line with yours?

 

No, but most of the Facebook groups refer to this site for tapering information.

 

Please continue your daily notes. Thanks.

[Eagledove]

Yes, I have been on benzos since 2006.

Thank you I will continue my daily notes.

[Eagledove]

@AltostrataThanks for getting me thinking on whether or not I was allergic to my probiotic. My akathesia, anxiety and surges upon waking are much improved since stopping. But 

I now have a permanent sore throat (definately histamine related symptom for me) and bloating. Not sure if my SIBO is back? I see that Seroquel is a major anti-histamine and of course things got worse for with me histamine when I started Mirtazapine. 

I have looked at my medical history in regards to histamine and gut issues and read up on Alison Vickery and see I have always had a major issue with histamine and gut difficulties from birth that are possibly causing me more issues than even the diazapam and mirtazapine as far as symptoms.  I spent 8 years on a SCD then the last year on GAPS with the help of a practitioner and am just taking out foods not resolving anything.

I'm wondering if you have any recommendations as to what I should be doing next? Any testing for HIT OR MCAS that might be helpful? If there are other

recommended practitioners closer to home, Canada, than Alison Vickery in Australia? I'm not even sure if she works with people who are tapering. I want to restart tapering but think I need to get a handle on the histamine issues a bit first. 

I appreciate any ideas you have and if I seem to be barking up the wrong tree I'm open to redirection.

Thanks  😊 

[Altostrata]

If you have a sore throat, it could be a reaction to something else you're ingesting. Are you taking any of your drugs in liquid form? Otherwise, I have no special knowledge of what might be causing your sore throat.

 

I can't give you any advice about SIBO or MCAS. I'm sorry, I am not current with HIT or MCAS experts. I like Alison very much. If you have alway have had mast cell sensitivities, that could be a major cause of your symptoms. Going on and off psychiatric drugs might have exacerbated this.

 

Good idea to apply some management tips for possible HIT or MCAS as a priority.