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FeralCatman: recovering from Seroquel


FeralCatman

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Hello everyone. I was referred to this website by a doctor in the Boston, MA area as a place to post an 11 page write up I did that documents my Seroquel withdrawal and recovery experience. Since I used to do quality assurance work and wrote procedures, I wrote my summary in the form of a procedure that I hope others will find useful in navigating their own way through the process. The summary contains more details of my history but here are the basics. The copies I gave to my doctors and therapist has my real name in it but the copy that will be posted here has my name blacked out. I will be posting it in the appropriate forum once I figure out where to put it. I hope it helps someone since I had to go through my experience largely on my own and flying blind.

 

Diagnosis: Bipolar 1, PTSD, Generalized Anxiety Disorder

 

Current Meds: Carbamazepine, Paxil, and Ativan as needed

 

Total psychiatric medications since 1994 has been 18 different medications. At one point I was on 7 at the same time.

 

I have been off of the Seroquel since August 1, 2021 and am very slowly recovering. At some point down the road I plan on tapering down and stopping my other medications. However, it will be awhile before I will be willing to go through the process again since as you all know, tapering and withdrawal is very tough to say the least.

 

I have only been aware of this site for less than a week but have already found it to be very useful so thank you for all of the informative posts and associated links. I plan to make good use of it all in furthering my education on what was done to me over the years in the name of 'Help'

 

---------

MOD NOTE

The document refereed to can be found in this post.

Edited by Kiasofia
Added Mod note and link to post

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • ChessieCat changed the title to FeralCatman: Recovering from Seroquel
  • Moderator

Welcome @FeralCatman

Thank you for sharing this with us and creating a drug signature. Congratulations on getting off Seroquel. I have added Seroquel as a tag to this introduction topic of yours so anyone searching the forum for experiences with Seroquel can find it. How many mg was your last dose? How much were you reducing by? What withdrawal symptoms have you experienced since then?

What is withdrawal syndrome?

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

Some of our info about tapering for the future:

Why taper by 10% of my dosage?

Micro-taper instead of 10% or 5% decreases

The Brassmonkey Slide Method of Micro-tapering

 

Why taper? Importance of gradual change in plasma concentration

Tips for tapering off quetiapine (Seroquel)  (Perhaps you want to add your experience here.)

Taking multiple psych drugs? Which drug to taper first?
 

When we recover, there are times of feeling OK mixed in with times of feeling bad.  This is called windows and waves.

The Windows and Waves Pattern of Stabilization

 

I found this post helpful to understand how these drugs actually work, why a slow taper is important and why healing can take time:

How Psychiatric Drugs Remodel Your Brain

 

Aside from a high quality fish oil and magnesium, be careful with supplements. Your central nervous system (CNS) has become sensitized from psychiatric drug use and can react unpredictably. Alcohol, caffeine, nicotine and other mind altering substances can make the condition worse. I read that you are finally able to drink some coffee, a good sign that you are healing, but limiting caffeine is still a good idea.

Important topics about tests, supplements, treatments, diet

 

Here is our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover. 

Symptoms and self care topics

 

This is your Introductory topic, where you can ask questions and connect with other members.  If you need any advice specific to you and your situation, please ask it here. Otherwise, feel free to join discussions on other threads. We're glad you found your way here. Please stay in touch and let us know how you are doing.

Edited by Kiasofia

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

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Thank you for all of the links and information. When I start the next phase of getting off of medications I will make sure to have read all of it. After talking to my immunologist today it will probably be at least a year before I can safely do anything else. My nervous and immune system are a mess right now and it will take a long time for things to level out. I go for more immune testing in February to see if things have started to recover since I have medication induced hypogammaglobulanemia. These meds do a number on the immune system as well which many people do not know. Here is an article about recent research being done at the University of New England regarding anti psychotics and their effect on the immune system. They have been researching side effects of anti psychotics for a few years now.

 

https://www.une.edu/news/2019/new-study-shows-antipsychotic-drugs-can-suppress-immune-system

 

I was put on seroquel in 2006 at 600mg while in the hospital. I maxed out at 800mg. In 2018 I was in the hospital again and was on 700mg. They reduced me to 500mg in one shot and nearly killed me. I spent a week recovering and they had to call in a kidney specialist and my heart rhythms were a mess. I typed up an 11 page summary of it all that I will upload soon. It took me 3 months post discharge to get back to baseline and then I started reducing at 25mg per month. It was pretty awful and I am lucky to still be alive. As the dose got lower the spacing became longer. I had problems with blood sugar crashes, blood pressure crashes, wild swings in circadian rhythm, severe anxiety, etc. The first few drops caused psychotic symptoms that lasted about 3 days. My final dosage was 6.25mg. It was pretty intense but I got through it.

 

I finished the taper on August 1, 2021 and am now in recovery. I stopped my Allegra for the year at the same time since I usually don't need it this time of year. Turns out that was a huge mistake. I went into histamine overload and started having nasty nightmares, severe waking anxiety, severe mood swings, etc. My BP also started to drop and when I finally figured things out it was down into the 80's / 50's with a resting pulse in the high 80's and I started getting symptoms of low BP. Ativan had not helped so I finally thought to try a benadryl and it worked. I took benadryl for a day and stopped it again the following day to test the theory and I crashed again so now I am back on the Allegra for the time being and take benadryl as needed. I am going to taper the Allegra in January and if I can safely stop it I will be getting my allergy testing re done as well as testing for MCAS, histaimine intolerance, and some mold toxicity testing which may be the root cause of my initial symptoms years ago. If not I will have to wait until next year.

 

Here is a spreadsheet that is my complete medication history since 1995 in bar chart form. It includes a weight history, psychiatric medications, and non psychiatric medications from month to month over 25 years. It is a good graphical representation of what 25 years of 'help' from psychiatry actually looks like. Printed out and taped together it is 9 feet long by 2 feet wide and really has an impact when you look at it laid out on the floor. It is this document which made me decide to start getting off of meds and triggered a years long research binge because you can quite clearly see the point at which I was becoming more physically ill.

 

medication history spreadsheet.xlsx

 

 

 

 

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator

Can you add 6.25mg as your final dose to your signature so we have it for reference? Again, thank you for sharing and I hope your recovery goes well. Taking a long break from tapering is a good idea.

 

Please stay in touch and let us know how you are doing.

 

To make sure I or someone sees your update, tag them by writing @ and then start typing their username. A drop down menu will appear. Click on their username and it will turn blue.

Edited by Kiasofia

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

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@KiasofiaI made the change you requested

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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Now that I am approved to post here is the other document I wanted to post. It is titled "Quitting Seroquel - A Vacation In Hell". It is an 11 page write up that provides a bit more information about me and my history and about my withdrawal from Seroquel. I am including the spreadsheet again in this post so they are together. I used to do quality assurance and wrote procedures so it is written in the form of a procedure. There are links in the document to some references I found that helped me understand things along the way. My hope it that this will be another reference that will help people with the process and to have faith that it can be done. How this was ever supposed to be helpful is beyond me.

 

Quitting Seroquel_A Vacation In Hell_Redacted.pdf

medication history spreadsheet.xlsx

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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@Kiasofia I posted 2 attachments. If I am logged on you can look at them but if someone just links to the posting without being a member they cannot access the attachments. Is there any way to fix that or do you need to be a member to view attachments?

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator

Yes, only members can view attachments it seems. I'm not sure why, but will look into it!

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

Link to comment

Since at least for now only members can download the attachments with my summary and medication history I am going to post the full text of my summary so non-members are able to read it. On MS Word it is 11 pages long so excuse me for this one huge post. I think it is worth it and I hope it is able to help someone. Here it is:

 

QUITTING SEROQUEL - A VACATION IN HELL

 

Background Information

 

Before I get to the meat of this story and what it took to quit this awful drug after 15 years on high doses, I want to provide a little background information on myself. My name is Rich Johnson otherwise known as The Feral Catman. I live a very quiet, unassuming, somewhat isolated, and low stress life and I want to keep it that way as it helps me to maintain an even mental state which is sometimes difficult under the best of circumstances. I own a home in the country and have 4 cats which are my children. I do animal rescue part time, I have been married and divorced twice, and I am 51 at the time of this writing. I served in the US Navy Submarine Service as a nuclear power plant mechanical operator but was retired after only 5 years due to my mental health diagnoses. I went to college and worked for many years but was retired on disability by my employer 10 years ago due to my struggles with multiple diagnoses.

 

My diagnoses are Bipolar Disorder Type 1, PTSD, and Generalized Anxiety Disorder. I also have multiple physical diagnoses as well including Ankylosing Spondylitis which is an autoimmune disease. I have voluntarily been to inpatient mental health treatment at various facilities 8 times in 25 years for what I thought was ‘help’ but in looking back at that ‘help’ most of it did more harm than good both physically and psychologically. I have also been to 3 rounds of intensive outpatient mental health treatment and am still in psychotherapy on a regular basis. Individual therapy has been the most beneficial treatment for me long term.

 

Over the years I have been on 17 different medications including Haldol, Risperidone, Olanzapine, Abilify, and Seroquel. These are all common medications used in the mental health system. They are also very profitable. Haldol is an older “Typical Anti psychotic” and the rest are the newer drugs known as “Atypical Anti psychotics”. At the height of my ‘career’ as a psychiatric patient I was on 8 medications simultaneously not including the non-psychiatric drugs I had been prescribed to manage the side effects of the psychiatric drugs. At my peak medication load  was also the time at which my physical health began a very rapid decline. What I have discovered in the end is that, taken long term, anti psychotic medications including the newer atypical anti psychotics, cause more harm than good and ultimately make you sicker and less functional. In my opinion these medications are only useful short term (ie: a month or two) and long-term healing and success involves lots of psychotherapy, self-evaluation and soul searching, lifestyle management, proper diet, exercise, a willingness to accept certain limitations put upon you by having a mental disorder, and the identification of strengths that you can build upon and use in managing your diagnoses and your life. Long term healing and functionality also requires the acceptance that sometimes it’s just going to hurt and that is to be expected. Pain, managed correctly, is a useful part of life. Know that it is never permanent and each state you move through will always be temporary.

 

 

     None of what has ended up happening to me was done maliciously or with the purpose of doing harm. It was all done with the best of intentions and a desire to help me have a better life. However, there is an old saying that goes, “The Road to Hell Is Paved with Good Intentions” and during this extended process of withdrawing from Seroquel that is exactly where I ended up. My hope is that by putting my experiences in writing and documenting the process I went through to get myself off of long-term anti psychotic medications successfully, they will serve as a guide for other patients and their providers and caregivers to allow them to do the same if they choose to do so. Make no mistake, going down this path is a very difficult and dangerous road and there are no magic solutions. It has taken a long time and a lot of pain to do what I have done and despite their desire to help as much as possible my doctors have been very limited in what they have been able to do to help me through the process other than to run the required tests, prescribe what I needed, and offer support. The daily nuts and bolts of dealing with the withdrawal has been largely up to me. Due to varying physiology and circumstances the process will be different for everyone. There are no supplements or replacement drugs to help with the process though an occasional Ativan and acupuncture did help to take the bite out of the worst times. There is no guaranteed timeline. There are withdrawal symptoms especially if done too quickly. Only time, patience, perseverance, and a supportive provider and therapist can make it happen. Having a good support system of family and friends is also critical. If you don’t have a good support system (and even if you do) I suggest making Google your best friend. There is a lot of information, support, and good advice out there on the internet if you need it. Coming down off of these medications cannot be done on a set schedule and must be done very slowly to be successful. Sometimes breaks from the process and holding at a dose for a while will be necessary. It will be necessary to feel your way through the process. It is important to only change one medication at a time if you are on multiple medications otherwise you will have no way to know which medication is causing a problem. It will hurt both physically and mentally. Having said all of that I found it has been well worth it to go through the process because in the end, at least for me, I recovered parts of my life that I didn’t even realize I had lost including some of my physical health. As I have learned sacrificing physical health for supposed mental health results in a net zero gain in your quality of life. You actually lose quality of life long term and you end up trading one sickness for another or in my case, several others. You don’t need to do this. For other patients who read this I truly hope this helps you to improve your life. For any mental health providers who read this I hope this helps you to help your patients improve their lives and that you will learn that prescribing these drugs needs to be done very carefully, thoughtfully, and preferably should only be used as a bridge through a crisis while other treatment modalities are put into place to ensure long term success.

 

 

     Also know that I am not a doctor or medical professional. I am a patient. This is from the perspective of an experienced patient. My background is in engineering and science so I do have a very good comprehension of scientific language and scientific data. When I read drug studies and medical studies, I have no issues comprehending what I am reading and applying what I read. That said I am not an expert and I can’t make recommendations for any situation but my own. How you interpret and apply what I describe will be between you and your prescribing provider and support team. The only recommendation I can solidly make for everyone is DO NOT try to do any of this on your own. You will need to enlist the assistance of a willing medical professional to be successful. There are people out there who have tried going it alone and it resulted in disaster. There is testing that will need to be done along with prescribing proper dosages of medications on your way down to zero. You will need support. Under no circumstances would I tell anyone to do this cold turkey. If you do, especially if you have been on high doses for a long time, you will most likely not be able to function and the results could be catastrophic or even fatal. Coming down off of these medications is not something to be taken lightly. As my current psychiatric nurse practitioner warned me, “a lot of complex reactions can occur when coming down off of these medications and pretty much anything can happen.” That has turned out to be very very correct. So, do it thoughtfully and carefully and most of all very slowly.

Why is Seroquel So Hard to Quit

 

            I was originally put on Seroquel to replace benzodiazepines because it was supposed to be non-habit forming, safer, and easy to stop. I was told that I could safely taper off of it in only one week. This has all turned out to be completely untrue since the process actually took 3 years and 4 months and the post withdrawal recovery is ongoing at 3 years and 6 months since I did the first reduction in dose. According to my primary care doctor I likely have ‘many months’ for my body to recover and the timeline is very unpredictable. From reading other patient accounts withdrawing from Seroquel is tougher than Heroin, Crystal Meth, and Crack and there are no effective programs or procedures to help you with the process which is why I am writing this. There are no studies available that document psychiatric medication withdrawal. When people are placed on these medications there is no mention of ‘discontinuation syndrome’ which has been a known phenomenon for decades. In my humble opinion there is no such thing as informed consent in psychiatry.

 

            What I have learned about this medication late in the game is just how much it affects in the body. Every major body system is affected and there are actually specific reasons for this that psychiatry does not tell you but if you read non psychiatric medical journals the information is all over the place. It is just not easy to find and string together and in doing research you have to ask non psychiatric questions to get the answers to your questions about psychiatric medications. Unlike antidepressants, street drugs, and other psychiatric medications which each only affect one neurotransmitter and its receptors, Seroquel is a broad-spectrum drug which affects multiple neurotransmitters and their receptors. The following link is the best article I have been able to find which explains the nuts and bolts of how this drug behaves in the human body and as a result it is easy to see why it causes so many problems. It is like getting hit in the face with a neurotransmitter blocking shotgun blast. In the long run nothing good will come of it.

 

Some who previewed this write up did not like the tone of the Author in the following link. To be honest neither did I and some of the commentary is unnecessary. However, when I was in boot camp none of us liked the tone of our company commanders but it was the information and skills they were teaching us that were the important part. The same can be said for the following link. The diagrams and technical explanations are what are important and they do the best job of getting the information across as compared to other sources I looked at.

 

 

https://thelastpsychiatrist.com/2007/07/the_most_important_article_on.html

 

 

If you ask most psychiatrists how Seroquel works the standard answer is ‘It Blocks Dopamine’. As explained in the link above this is only partially true as it does not start to block dopamine until the dosage is above 200mg. What they don’t tell you is that it also has a high affinity for H1 histamine receptors, A1 adrenal receptors, and 5HT2 serotonin receptors. At 200mg and below it is primarily a very powerful antihistamine. What I have learned is that these chemicals are used for far more than modulation of mood and anxiety. They are used for various processes throughout the body and are essential to just about every function in the body not just mood and thought. Since Seroquel affects multiple neurotransmitters, it is much more disruptive to the body than medications that only affect one neurotransmitter. It is analogous to a broad-spectrum antibiotic that works on a wide range of pathogens versus a something that works only on very specific pathogens. However, broad spectrum antibiotics if used frequently can also cause the most trouble down the road as we are finding out after many years of their use with the emergence of antibiotic resistant disease.

 

Once I realized how many things this drug affects, I looked up what each of these neurotransmitters does in the human body and was quite shocked with what I read. Here are some samples of what I read for each neurotransmitter.

 

What is Histamine used for in the Human Body?

 

As you can see from this link Histamine is not just the sneezy itchy chemical associated with allergies that I always thought it was. It is actually a neurotransmitter that is essential for almost all of the major body functions. As an H1 Receptor blocker Seroquel affects the following systems as referenced in the link below. Knowing that it affects endocrine homeostasis it is no wonder that it causes diabetes, metabolic syndrome, and weight gain.

 

 

G-protein coupled receptor

 

Location

 

Function

 

Sources

 

Histamine H1 receptor

 • CNS: Expressed on the dendrites of the output neurons of the histaminergic tuberomammillary nucleus, which projects to the dorsal raphe, locus coeruleus, and additional structures.
 • Periphery:
Smooth muscle, endothelium, sensory nerves

 • CNS: Sleep-wake cycle (promotes wakefulness), body temperature, nociception, endocrine homeostasis, regulates appetite, involved in cognition
 • Periphery: Causes
bronchoconstriction, bronchial smooth muscle contraction, urinary bladder contractions, vasodilation, promotes hypernociception (visceral hypersensitivity), involved in itch perception and urticaria.

 

 

 

https://en.wikipedia.org/wiki/Histamine

 

 

What is Serotonin used for in the human body?

 

 

Any time I have asked a psychiatrist about Serotonin the standard response is that it is responsible for depression and mood. As referenced in the link below it is responsible for far more that that. This is another neurotransmitter that affects many body systems and is very disruptive if placed out of balance.

https://en.wikipedia.org/wiki/Serotonin

 

 

What is Dopamine used for in the human body?

 

 

            Once again, the standard answer given about Dopamine is that it is a neurotransmitter in the brain that is responsible for pleasure. However, it is yet another chemical that is important to every part of the body.

 

 

https://en.wikipedia.org/wiki/Dopamine

 

 

What is adrenaline used for in the human body?

 

 

            No need to repeat myself so here is the link for adrenaline.

 

 

https://en.wikipedia.org/wiki/Adrenaline

 

 

            After reading all of this it became very clear to me why Seroquel is so disruptive and dangerous. It also is now clear why it is so hard to get off of after taking high doses for so many years. It is affecting not just the brain but every major system in the body and this is why withdrawal is so dangerous and miserable and must be done very very slowly. It takes a long time for your body to re-regulate all of these affected systems back to a baseline level of proper homeostatic functioning. To try and rush the process will only hamper your efforts and cause you pain and suffering and possibly much worse including death. Worst of all (yes I think it’s worse than death) you can end up back on it at even higher doses if you listen to conventional wisdom of restarting the medication or using a higher dose to deal with the withdrawal symptoms. This is what makes my current psychiatric nurse practitioners’ statement about ‘anything can happen’ so true.

 

How do you get off of this stuff?

 

Phase 1 (Preparation)

 

As I mentioned earlier the day-to-day process is different for everyone. I am leaving most of the day-to-day withdrawal drama out of this because of that fact. You need to know your mind and body and listen to what they say. The longer you were on the medication and the higher the doses the more your brain and body have been altered and the longer the recovery will be. Before you get started on your way down, I highly suggest having the following items.

 

  1.        A good blood pressure monitor
  2.        A fingertip blood oxygen sensor
  3.        Get a single lead EKG sensor that hooks into your smart phone to check heart rythms. I used the Kardia Mobile single lead EKG
  4.        A good scale
  5.        If you have high blood sugars you need a glucometer and I highly suggest getting a continuous glucose monitor if you can so you can see trends as you go along.
  6.        A good home thermometer
  7.        A notebook or diaryMood charts or app (There are many you can download)
  8.        Sleep charts or app (There are many you can download)
  9.        Vital sign charts or app (There are many you can download)
  10.        Diet tracking charts or a diet app to keep track of food intake
  11.        A compassionate medical professional that is willing to help you through things and run tests and prescribe medications as needed as well as to offer moral support.
  12. I     If you don’t already try to start getting some exercise on a daily basis. Make sure you get clearance from your doctor that it is safe to do so. Exercise releases endorphins which will help to blunt things a bit and it will help your body to recover.
  13.       Additionally, depending on your list of side effects, a fresh set of bloodwork and other tests should be done to establish a recent baseline on all of your values. These would possibly include a CMP, A1C, Lipid Panel, Cardiac Risk Factor, Thyroid tests, and others as your doctor sees fit as well as a baseline EKG so any changes during withdrawal can be identified and dealt with promptly. These tests should be repeated periodically throughout the process and after you are off the medication until things show they are stable.

 

 

Before you start reducing the medication, I recommend keeping charts of your vital signs, moods, sleep, and activity on a daily basis for at least 2 months so you have a good baseline to start from. Keep notes on any significant events that affect your mood or health. This way you know your patterns and as you go through the process you will be able to identify changes in mood and body function and will be able to know what is you, what is life affecting you, and what is withdrawal. It will also help you to see that you are making progress and will help prevent you from getting frustrated and as a result quit the quitting process. It will also help you to know if you are in any danger and need to call your doctor or go to the ER. It will also help you to remember that even though you might currently feel horrible it was only a few days prior that you felt okay. You will get to know your withdrawal and recovery patterns for each time you reduce the medication and will get a feel for how long it takes symptoms to pass. I know that when I am having a really bad day it is impossible to remember the last time I felt good and it is easy to get frustrated. Having this information proved very useful for me. There are many supplements recommended by various people on line that claim to help with the withdrawal. I found that most were useless. Further into the process I found that Chamomile Tea, which is a natural antihistamine, to be somewhat calming and Valarian Root Tea, which acts in the same way as a Benzodiazepine, to also be helpful to take the worst of the edge off. Don’t use Valerian Root every day because you can end up with withdrawal from that. No need to add insult to injury. In the end however I found the key is really simple, tolerate the discomfort and gut it out.

Phase 2 (Beta Testing)

 

            Once you have done that and have a good baseline it is time to start reducing the dose. Everyone is different so you will have to experiment. Some people can reduce by cutting the dose in half, some have to do small increments of 10% per month, and some like me had to do even smaller drops. For most people, the lower you go the smaller the reductions need to be. Even though the mg dosage drop is the same the percentage of your total dose actually goes up the lower you go. There really is no way to gauge ahead of time so I suggest trying a very small reduction at first and see how you do. 25 mg is the smallest prescribed dose so try 12.5 mg (1/2 a tablet) and see how you do. If after a week you feel alright try reducing by another 12.5 mg and then wait a week. It is better to start off with smaller reductions than to find out the hard way by doing a larger one. I was in the hospital when the first reduction was done. They cut back from 700mg to 500mg in one shot. It made me horribly sick and ended up having to be transferred up to a medical unit for a week for me to recover and they had to call in a kidney specialist. Everything went completely out of whack. My heart rhythms were a mess, my sodium crashed, and I was leaking out of every hole. It was awful. The anxiety was crippling. When I was discharged and got back home the anxiety was so bad that I could not be left alone for a couple of days which is highly unusual for me and was pretty much nonfunctional. I couldn’t tolerate most food and didn’t eat much. It took almost 3 months for me to recover from that one big drop. It was a huge mistake and could have been fatal had I not already been in the hospital. I was still on metformin at the time this was done and a week after I got home, I collapsed in my front yard. Turns out my blood sugars dropped way down and I had to stop the metformin. I have not had to go back on it and it has been 3 and a half years.  I also stopped my blood pressure medication as I suspected side effects of the new medication the hospital had put me on and surprisingly enough my blood pressure actually dropped back to normal. So, this indicates some kind of odd cross reaction was occurring that is as yet unexplained. I am still not taking blood pressure medications almost 3 and a half years later. Both of these are good things but I had to find out the hard way which is why large drops are inadvisable especially if you have side effects like diabetes, metabolic syndrome, or high blood pressure. If you live alone like I do then it is even more critical to not do this to yourself. During this first drop I also developed a hypersensitivity to coffee and caffeinated drinks so I had to cut those out of my diet. It took severe anxiety and made it completely unmanageable. After 3 years and 4 months of withdrawal plus 2 months off of Seroquel I am finally able to drink a half decaf iced coffee and not jump out of my skin while doing so.

 

Phase 3 (Reduce at a Comfortable Pace)

 

            Comfortable is a relative term that is different for everyone. Once I recovered from that initial reduction and everything stabilized, I started in again with a 25mg reduction. After 1-2 days the withdrawal would start. Sleep became almost impossible and the anxiety and irritability was brutal. I dealt with it by taking long walks in the woods where I feel safe and by keeping busy around the house. I found that with this dosage drop the time to cycle through the worst of the withdrawal was 18 days. After 18 days I was pretty much back to baseline. I have to say that from a psychological standpoint it was very difficult knowing that I was going the have to repeat the process and be miserable like that not just once or twice but many times. It became very much like trying to psych yourself up and look forward to repeatedly kicking a brick wall with your bare feet. You know it’s going to hurt like hell but you have to do it anyway. So, I continued with 25 mg drops monthly, with a few extended breaks here and there for thyroid medication adjustments and testing until I got down to 200mg. As I approached 200 mg the mental health withdrawal symptoms actually became less intense. However, this is where other problems began to creep up and the recovery times started to grow longer. I held at 200mg for quite awhile to let my body rest and adapt to not having a Dopamine blocking agent on board. During this process, depending on your health and side effects, your doctor should be monitoring your blood work, medications, and your self-recorded vitals so that any adjustments to non-psychiatric treatment can be made and any risks can be properly assessed and dealt with. Mine gets done every 3 months.

 

A Note on Neurotransmitters and Withdrawal

 

            Based on what I now know about neurotransmitters, what they are used for in the body, and which ones Seroquel blocks, the changes in the withdrawal symptoms over time make sense. Of course no one can confirm or deny what I am about to say because all of it is still so poorly understood so, as with anyone else, this is my ‘best guess’. From the perspective of an experienced patient like myself, it all makes sense based on my experiences both in taking the medication for many years, tapering the medication, and now being off the medication as well as having read the accounts of many other people who have gone through the same thing.

 

 

     Since the effects of the medication are dose dependent the neurotransmitter receptor sites that are affected change as you lower the dose. At higher doses a reduction mostly affects dopamine. As you go lower you start affecting more adrenal and serotonin receptors and less dopamine. Once you get below 200 mg you are largely done with dopamine, serotonin, and adrenal receptors and dose reductions are now affecting mostly histamine receptors. Funny enough (or not) histamine is the chemical which has the most critical functions throughout the body of all of the affected neurotransmitters and it is this phase which caused me the most trouble and put me at the most physical risk. So, the withdrawal, starts with dopamine and if done slowly your body has a chance to re-regulate things on the way down and recover. Go too fast and there is not enough time to recover on the way down and you get to the point where you will be affecting dopamine, serotonin, adrenal, and histamine receptors all at once and you will be a mess.

 

Phase 4 (The Histamine Phase)

 

            Once I dropped below 200 mg I started to have random and significant drops in my glucose levels again as well as drops in my blood pressure. It started with low glucose levels down into the 50’s and I ended up in the ER twice due to symptoms of hypoglycemia that I could not get to recover. It turns out that the episodes simply had a much longer recovery time than would normally be expected and prior to starting any reduction hypoglycemia had never been a problem. Due to these blood sugar drops and associated symptoms I had to wait much longer between dose reductions to allow my sugars to stabilize. This was up to 3 months between reductions. Last summer as I moved below 100mg I began to have large blood pressure drops as well. My BP fell as low as in the 80’s / 50’s. They were random and enough to cause symptoms of hypo-tension. Both hypoglycemia and hypo-tension can be dangerous so this is why it is so important to take vitals and notes for a couple of months and get fresh lab tests done before you start the process or you can end up in real physical trouble by not being able to recognize the signs of impending trouble. I was working on my shed roof when I had a BP drop and almost fell off the roof so you need to be very aware of any symptoms and be very careful. As I moved below 200 mg I also began to have horrible waking anxiety after each reduction for a few weeks and my sleep cycle began to fluctuate even more than normal. I now know that this is due to histamine playing a major role in the sleep wake cycle and also in anxiety and I was becoming overloaded on histamine. My primary care doctor explained it to me as being the result of having been on a histamine blocker for so long that my body had up regulated my histamine receptors to account for the drug and now even normal circulating amounts of histamine are creating havoc in my body.

 

Post Medication Recovery

 

     After 27 total rounds of withdrawal over 3 years and 4 months I am now 2 months off of the Seroquel and this is what I am still dealing with. Histamine overload. My sleep wake cycle has reversed, I have been having horrible nightmares, and to add insult to injury I had stopped taking my Allegra which I usually don’t need this time of year. I had stopped it in the past with no trouble so had no reason to suspect what came next. A few days after I stopped it, I started in with horrible anxiety, paranoia, irritability, and wildly fluctuating mood. It got worse and worse and I started to panic. Even trying to put wax on my truck and focus on it caused crippling anxiety and sobbing. In a moment of clarity, I wondered about histamine overload and tried taking a Benadryl and within half an hour I felt much better. I was utterly amazed at the immediate and profound effect it had in recovering my mood and anxiety. I tried the Benadryl for a day to recover and then stopped it again and I quickly fell back into misery. So, I started the Allegra again and am back to baseline. I contacted my primary care doctor and he explained that being on a powerful histamine blocker for so long caused my body to up-regulate my histamine receptors and now that I am off of it I am getting overloaded on histamine that normally circulates in the human body. That coupled with Fall allergy season is what did me in. I also talked to my ENT specialist about all of this. In the end when the symptoms were really bad and my BP was getting consistently very low, he said this was the result of a slow-motion transition into anaphylactic shock due to the histamine overload and that I was lucky I thought to take the Benadryl because it could have been fatal. So, in this post medication recovery period I will have to continue on the antihistamines and carry extra Benadryl everywhere I go until things freeze up for the winter and then I will try tapering that down when allergens are low. I am also switching to a low histamine diet to see if it helps. If I get off of the antihistamines this winter successfully then I will finally be into the real recovery phase and hopefully things will improve and I can move on with my life. In this phase taking an antihistamine and a low histamine diet may be key in helping the withdrawal and recovery process along. The Benadryl certainly helped me and most likely saved my life.

 

Final Notes

 

            As I said earlier, I left most of the day-to-day drama out to keep this from dragging on into a full-size book. The long and short of it is that this is by far the most difficult thing I have ever had to do. Getting off this drug sucks, there is no other way to put it. None of my other life experiences, including those in the Submarine Service, even come close. The good news is that there have been a lot of improvements and I have gone from 16 meds daily to 6 meds daily plus a multivitamin, vitamin D, and fish oil. I have gone from a medication induced diabetic who was dependent on Metformin to a non-medication dependent diabetic. I am off blood pressure medication. My cholesterol medication is at the lowest prescribed dose and I hope to be off of it soon. My heat sensitivity is gone. My light sensitivity is gone and I no longer have to wear sunglasses on a cloudy day. My sleep schedule is shifting slowly back to where it was when I was in the military. I am no longer a zombie for the first 2-3 hours every day. In time it will make things easier to deal with other health conditions without the special consideration necessary for people who are on this medication. The blood pressure and glucose crashes seemed to have stopped. So, even though there is evidence of some permanent damage and a few things remain unchanged, overall, I feel much better than I have in a long time. Was it worth it to go through the process? Hell yes. You just have to go through hell to get to a better place. Good luck and best wishes.

 

 

Rich Johnson

The Feral Catman

 

________________________

________________________

 

As a final note, this write-up is from my own experiences and research and I wrote this long before I found this web site and became a member. There is an immense amount of good information on this site that is not included in my write up so check what I wrote against other references and experiences on this site to make sure you are doing what is right and safe for you. The moderators on this site are very knowledgeable and experienced and should be consulted with any questions or issues as I am am still learning myself.

 

Please take care and stay safe and stay hopeful. Whatever your journey, you can do this.

 

 

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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Here are some things that I have on my laptop slideshow that have helped me along the way.

 

image.jpeg.3e0518df9cc257bffcfd5b09a0644110.jpeg  

 

 

 

image.jpeg.3452cec6896be6be8d429fc8f5091e13.jpeg

 

 

image.jpeg.8141d10c0712676cda24bb06d9edc6db.jpeg

 

 

image.jpeg.88a6da0c52406e4689baa3452034b1ea.jpeg

 

 

 

 

 

 

 

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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Thank you for sharing all these info and  experiences… I am sorry you have suffered so much but very glad you are doing so much better. I am still trying to figure out how my life was destroyed by just 3.5 weeks of Zoloft and no signs of recovery 14 months later. Your story gives me hope and strength to keep going , thank you 

Aug. 16-17, 2020, cipralex: went CRAZY! Recovered in 24hrs

Aug.28,2020; 3.5 weeks 25mg sertraline/4.5 weeks taper

Oct. 25: Last dose (4mg)

Symptoms while on zoloft

DPDR/out of my body/soul despair/feeling dead; tinnitus/no appetite; fear, anxiety/panics

4 months OFF: soul despair, anxiety/fear, brain disconnection/ DPDR, brain feels swollen-numb/crazy/bedridden barely functioning, tinnitus, eye lid twitches; face spasms. Feeling slightly better after 10pm.

- sleep & appetite are fine

9 months OFF: hell, no windows, same symptoms as above  (only eye and face twitches have stopped) plus intense arm/shoulder pain and visual issues. Tinnitus replaced by head buzzing. 

10 months-1 year: all above plus Insomnia (out of nowhere), depression, no peace of mind (mental Akathisia); 2.5mg melatonin

14months off: sleep resumed. All rest symptoms remain. Bedridden vegetable all day. DP is relentless. 

1.5 years off: still severely disabled, not much changed except some improvement in vision.

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I am glad it was able to help. My journey is not over but I have more good days than bad right now. All I can say for sure is that eventually things do improve. All you can ever do is wake up and try again. Life has a funny way of turning on a dime and you just never know when that will happen until it happens. Just know that your body will repair itself as the human body is very good at it. It's the unknown timeline that is hard.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator
13 hours ago, FeralCatman said:

Since at least for now only members can download the attachments with my summary and medication history I am going to post the full text of my summary so non-members are able to read it.

Good idea. I added a link to this post in your first post so it is easy to find.

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

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@JesusSavemefromWD

 

To JesusSavemefrom WD - I read your signature and have had some time to digest things a bit. My brain is a bit slow on the uptake these days. I have experienced most of what you describe at one point or another over 27 years of being on many medications. It is scary and frustrating and I'm really sorry that you are suffering so much. It's really awful that this gets done to people in the name of 'Help'. Since there is not much I can offer for relief other than sharing my experiences I have been thinking if there is anything I can offer up to help.

 

Since I am a crazy cat guy I have a list on my fridge called the Kitty Prayer List for people and animals in my life. Not sure if it works but it certainly cannot hurt. I will add you to the list specifically and will also add a generic entry for all those who are struggling with the same things.

 

So sorry this has happened to you. You are in our kitty prayers now. 🥰😻😻😻😻

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment
8 minutes ago, FeralCatman said:

@JesusSavemefromWD

 

To JesusSavemefrom WD - I read your signature and have had some time to digest things a bit. My brain is a bit slow on the uptake these days. I have experienced most of what you describe at one point or another over 27 years of being on many medications. It is scary and frustrating and I'm really sorry that you are suffering so much. It's really awful that this gets done to people in the name of 'Help'. Since there is not much I can offer for relief other than sharing my experiences I have been thinking if there is anything I can offer up to help.

 

Since I am a crazy cat guy I have a list on my fridge called the Kitty Prayer List for people and animals in my life. Not sure if it works but it certainly cannot hurt. I will add you to the list specifically and will also add a generic entry for all those who are struggling with the same things.

 

So sorry this has happened to you. You are in our kitty prayers now. 🥰😻😻😻😻

Thank you …. I am sorry for ur suffering as well but I see you are on your way to recovery. You are in my prayers as well. 

Aug. 16-17, 2020, cipralex: went CRAZY! Recovered in 24hrs

Aug.28,2020; 3.5 weeks 25mg sertraline/4.5 weeks taper

Oct. 25: Last dose (4mg)

Symptoms while on zoloft

DPDR/out of my body/soul despair/feeling dead; tinnitus/no appetite; fear, anxiety/panics

4 months OFF: soul despair, anxiety/fear, brain disconnection/ DPDR, brain feels swollen-numb/crazy/bedridden barely functioning, tinnitus, eye lid twitches; face spasms. Feeling slightly better after 10pm.

- sleep & appetite are fine

9 months OFF: hell, no windows, same symptoms as above  (only eye and face twitches have stopped) plus intense arm/shoulder pain and visual issues. Tinnitus replaced by head buzzing. 

10 months-1 year: all above plus Insomnia (out of nowhere), depression, no peace of mind (mental Akathisia); 2.5mg melatonin

14months off: sleep resumed. All rest symptoms remain. Bedridden vegetable all day. DP is relentless. 

1.5 years off: still severely disabled, not much changed except some improvement in vision.

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On 12/9/2021 at 8:40 AM, FeralCatman said:

I am glad it was able to help. My journey is not over but I have more good days than bad right now. All I can say for sure is that eventually things do improve. All you can ever do is wake up and try again. Life has a funny way of turning on a dime and you just never know when that will happen until it happens. Just know that your body will repair itself as the human body is very good at it. It's the unknown timeline that is hard.

More good days than bad it’s an excellent sign of recovery. I wish I had even one ok day so I can believe in my recovery as well. I have seen minor linear improvements though so I hope time and faith will heal me. As a neuroscientist I am well aware of the power of Brain neuroplasticity I just can’t understand why in the world it’s taking soooo long! Please stay strong. Most doctors are drug dealers and have no idea what suffering they are causing prescribing ADs like candies. 

Aug. 16-17, 2020, cipralex: went CRAZY! Recovered in 24hrs

Aug.28,2020; 3.5 weeks 25mg sertraline/4.5 weeks taper

Oct. 25: Last dose (4mg)

Symptoms while on zoloft

DPDR/out of my body/soul despair/feeling dead; tinnitus/no appetite; fear, anxiety/panics

4 months OFF: soul despair, anxiety/fear, brain disconnection/ DPDR, brain feels swollen-numb/crazy/bedridden barely functioning, tinnitus, eye lid twitches; face spasms. Feeling slightly better after 10pm.

- sleep & appetite are fine

9 months OFF: hell, no windows, same symptoms as above  (only eye and face twitches have stopped) plus intense arm/shoulder pain and visual issues. Tinnitus replaced by head buzzing. 

10 months-1 year: all above plus Insomnia (out of nowhere), depression, no peace of mind (mental Akathisia); 2.5mg melatonin

14months off: sleep resumed. All rest symptoms remain. Bedridden vegetable all day. DP is relentless. 

1.5 years off: still severely disabled, not much changed except some improvement in vision.

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@JesusSavemefromWD

 

As I have found out these medications don't just affect the brain they affect neurotransmitter receptor sites everywhere they exist in the body, which is of course, everywhere in the body. So even taking things for a short time, depending on individual physiology and environment and genetics, etc. , they can still affect you in profound and unexpected ways. My understanding is that the body is a big jumble of feedback loops with many inputs to a few master controllers that collect the input and issue instructions and once you screw up the feedback loops everything gets out of whack. Doctors don't seem to understand these interconnections and definitely don't account for them when prescribing. In reality, you can't even drink a glass of water without in some way altering every system in your body due to these feedback loops. This is of course just my own wording to help me understand it all.

 

So, your whole body has been affected which means you are healing on multiple levels. I would say that small linear improvements are a good sign and it is just that your body's timeline for healing from this is very slow and extended. That said, I think you will eventually get there but patience is difficult at best when you feel bad on so many levels.

 

Kitty Prayers

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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I have a question about symptoms that I am experiencing.

 

I have been getting cold hands and feet lately and that has never been a problem before so I am wondering if it is WD related.

 

While on Seroquel I had a severe heat intolerance but now it seems that I have a bit of a cold intolerance which has also never been an issue. I am wondering if this is possibly WD related.

 

I get plenty of exercise, my BP is good, my thyroid levels are good, my glucose is good, and my last stress test less than a year ago was great.

 

Thanks for any input and resources.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator

There is this thread on Body temperature.

 

The search function on this site doesn't work very well.  The best way to search this site for specific information is to use your favorite search engine. Type in survivingantidepressants.org then the symptom, treatment, supplement or information you wish to search for.

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

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@FeralCatman
Thank you for your experience.

Do you have any advice to those that were forced to quit medications cold turkey and still are on medication? 

Current: Bupropion 450mg, Neurontin 800mg, Klonopin 0.5mg

History:

July 2020: started Cogentin 1mg, Lamictal 50mg, Zoloft 150mg, Zyprexa 5mg (+5mg as needed), Klonopin 0.5mg

November 2020: stopped all meds cold-turkey

February 2021: started Latuda 60mg, Lithium 300mg, Melatonin 5mg, Protonix 40mg, Topamax 25mg

2 weeks later: stopped Topamax, increased Lithium 900mg, started Klonopin 1mg, Lexapro 20mg, Neurontin 400mg

April 2021: started Bupropion 150mg, Revia ?mg

May 2021: stopped ReviaProtonixLexaproincreased Neurontin 800mg, started Celexa 10mg

August 2021: decreased Celexa 5mg (stopped Celexa 2 weeks later), increased Bupropion 300mg

September 2021: increased Latuda 80mg

October 2021: decreased Lithium 600mg for 4 daysLithium 300mg for 4 daysstopped LithiumLatuda

     increased Bupropion 450mg, started Remeron 15mg, decreased Remeron 7.5mg, stopped Remeron

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You have been cycled through a large number of medications in a relatively short amount of time so your brain and body are still trying to figure it all out so I can't offer any technical advice, some of the moderators would be much better for that.

 

The only advice I can really give anyone is to do your research thoroughly so you can understand what is happening to you. For me this helps deal with the different symptoms in a more logical way. If you plan to continue off meds at some point do your research and have a plan and consult with the people on this site who have experience with the meds you are on. Other than that it really boils down to taking things 'One Day At A Time" and feeling your way through the process. For me the worst of the WD side effects have lessened with time but the timeline is different for everyone so don't get too hung up on time or comparing anything with anyone else. We all have unique components of our minds and bodies that will react differently and it is fairly unpredictable. I did that in the beginning and all it did was frustrate me and make me angry which I didn't need. I am still getting hit with bouts of waking anxiety and sudden severe depression that is now coming and going much quicker but as for what to expect down the road I have no idea so that is where the "One Day At A Time" come into play.

 

I also use exercise as a treatment for both mental symptoms and my other conditions like Ankylosing Spondylitis. Lots of walking, hiking, and calisthenics any day that I feel up to it.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment

Thank you @FeralCatman

Current: Bupropion 450mg, Neurontin 800mg, Klonopin 0.5mg

History:

July 2020: started Cogentin 1mg, Lamictal 50mg, Zoloft 150mg, Zyprexa 5mg (+5mg as needed), Klonopin 0.5mg

November 2020: stopped all meds cold-turkey

February 2021: started Latuda 60mg, Lithium 300mg, Melatonin 5mg, Protonix 40mg, Topamax 25mg

2 weeks later: stopped Topamax, increased Lithium 900mg, started Klonopin 1mg, Lexapro 20mg, Neurontin 400mg

April 2021: started Bupropion 150mg, Revia ?mg

May 2021: stopped ReviaProtonixLexaproincreased Neurontin 800mg, started Celexa 10mg

August 2021: decreased Celexa 5mg (stopped Celexa 2 weeks later), increased Bupropion 300mg

September 2021: increased Latuda 80mg

October 2021: decreased Lithium 600mg for 4 daysLithium 300mg for 4 daysstopped LithiumLatuda

     increased Bupropion 450mg, started Remeron 15mg, decreased Remeron 7.5mg, stopped Remeron

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Update on recovery:

 

Now that everything is frozen I have started reducing my Allegra. I have been taking 24 hour Allegra which is 180mg every morning. On Sunday I switched to 12 hour Allergra which is 60mg twice daily for a total of 120mg daily and am going to hold here for awhile. Symptoms occurred within the first day which shouldn't surprise me, but it did.

 

  1. Waking anxiety is much worse. I get jolted awake at about 3:30 am and don't get much sleep after that. The anxiety starts to turn down at about 7am.
  2. The amplifier in my head has been turned back up. At night I can hear my cats walking from the other end of the house.
  3. Urination frequency and amount went way back up. I have to pee constantly.
  4. My BP dropped by about 15 points systolic and about 5 points diastolic but is still good. My resting heart rate went up a bit but is still good. That brings it from high normal to normal
  5. All of the enthesis points associated with my Ankylosing Spondylitis have swelled up except for my heels. My back is swollen up pretty good right now.
  6. My sinuses are swollen. Even my teeth hurt and I woke up with a nasty sinus headache.
  7. I am getting minor upper respiratory allergy symptoms including itchy eyes which is not typical for current conditions.
  8. These are part of the long list of things that happened while tapering the Seroquel which is also an H1 blocking antihistamine.

All of this is from histamine overload. Another good example of just how powerful histamine is and how much it affects in the human body. Allegra is not a super powerful antihistamine so the dose decrease was actually pretty small yet the affects are widespread and profound. I am going to hold at this dose until symptoms subside and then start in again using liquid childrens allegra to taper down. Never in all of my years would I have expected to be going through Allegra withdrawal after getting off the Seroquel. It makes me wonder if there are people out there who take these drugs during allergy season, quit cold turkey, and end up on antidepressants or benzos and never realize the cause was actually withdrawal from an H1 blocking antihistamine. In the past stopping the Allegra was never an issue but I of course did not realize at the time that Seroquel is actually an antihistamine and Allegra is actually pretty weak when compared to the Seroquel. From this point forward the way I deal with allergies is going to be very different as I definitely don't want to do this again.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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I should add that antihistamines like allegra, claritin, etc. do not cross the blood brain barrier so they do not block H1 receptors in the brain only out in the rest of the body which is why they do not cause drowsiness. So, this is a good example of how altering H1 receptors in the body still cause effects like anxiety in the brain. Everything is connected and modern medicine does not yet fully grasp this concept.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment

@KiasofiaI reduced my Allegra again on Sunday by cutting the morning dose in half. Last week the symptoms lasted 4 days. This week they lasted 2.5 days and were not as severe. Yesterday I was exhausted to the point of not being able to stand up and my hands and feet were frozen blocks of ice. This morning I feel much better so this time was not as bad as the last. My BP has not gone down again so far. Still amazing how sensitive my system is right now. So, all good things in the grand scheme of things and it is looking like I will soon be off the Allegra and will be able to get the allergy testing done in February as planned and will finally be able to move forward from my "Vacation In Hell" withdrawing from Seroquel.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment

@Kiasofia I read an article this morning from the British Pharmacological Society tiltled " Strategies to Reduce Use of Antidepressants". It is the first truly hopeful article I have come across that shows that medicine is starting to understand the harm it is doing to people and that there are better ways to deal with things and are taking steps in that direction. It discusses withdrawal and discontinuation syndrome, proper tapering, short term vs. long term use, and mentions that the risks may outweigh the benefits in many cases. Here is a link to the article.

 

https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bcp.14475

 

Not sure where to post this one so I thought you may know where to post it on this site.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment

@Kiasofia I would also add that the British NHS has issued recommendations which are in line with the article I just posted.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator

Hi @FeralCatman

You can create a topic in our In the media section and post the article there. Are you familiar with The Council for Evidence based Psychiatry ? They are trying to get the word out too.

 

I'm sorry getting off Allegra is rough, but good that it seems to be going better now. ❤️

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

Link to comment

@Kiasofia

 

Thank you. No need to feel sorry but I appreciate the sentiment 😉✌️ Just part of the process though it was unexpected and surprising. As I said, it definitely caught me off guard but it looks like the process will be fairly quick, especially compared to coming off of Seroquel, now that everything is snow covered and frozen.

 

I will post the article as you suggested and thank you for the link. I will check it out.

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment

@Kiasofia@ChessieCat

 

I have something I would like to post for people that is not medication related but some may find it helpful. I am not sure where to put it other than here. It is a you-tube video of a graduation speech given at the University of Texas in 2014 by Admiral McRaven, a US Navy SEAL. I have watched it many times when I needed some motivation and I find it to be one of the most inspirational speeches I have ever listened to. Some of what he talks about I relate to from my time in the military and I still use parts of my training in dealing with life's constant string of challenges including medication withdrawal. It is applicable no matter what your challenge. Does this web site have a place for things like this?

 

https://www.youtube.com/watch?v=yaQZFhrW0fU

 

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

Link to comment
  • Moderator

You can put it in the Finding meaning section😊

These are my opinions based on my own experience and what I have learned, not medical advice.

 

Drug history

2002-2019 Citalopram/Escitalopram, Lamictal
2019 April Escitalopram, quit at 10mg (withdrawal), Oct Escitalopram 10mg reinstated, quit after a few days (adverse reaction)

2019 Oct Lamictal cut from 200mg to 100mg
2019 Dec Lithium 83x2 mg

2020 Aug-Nov Lamictal tapered to 50 mg

2020 Nov 24 Lithium taper started, 30 Jan off Lithium

2021 15. March-31. May Lamictal tapered to 32.5 mg (holding)

2022 10. Jan started taking 25mg+5mg+2mg+0.5 liquid, 22. Jan went back to taking 25mg+5mg+half 5mg

Link to comment

@KiasofiaSo, here is an update on my final course of withdrawal from Allegra. I am posting all of this because there may be other patients who run into the same problems. If not addressed as possible withdrawal they could get misdiagnosed and treated for something else which could cause even more problems.

 

___________

___________

As previously posted I have been tapering the Allegra now that things are frozen and snow covered and allergens are buried.

I first switched from 24 hour Allegra once a day to 12 hour Allegra twice a day. The effect on mood and anxiety was profound but short lived for about 3 and a half days. I am having the waking anxiety again from 3-7 am every day. I also started having to pee constantly which is still happening.

The next week I cut the morning dose in half and the symptoms flared up and I started having GI issues as well. I am still taking Nexium daily.

This past Sunday I eliminated the morning dose and the same thing happened. I haven't been able to leave the house for 2 days now due to the GI issues and Urinary Issues. Today is a bit better but still shaky.

My BP's are still okay so I will cut the night dose in half this Sunday and then stop altogether the following Sunday so I can get my Allergy testing done in February.

In my write up I stated it took 27 rounds of withdrawal to get off the Seroquel. I am counting this as part of the process so that number will go up to 32.

Nothing should surprise me at this point but I have to admit it is surprising me how much trouble coming down off of an OTC antihistamine is causing me. I assume it is because I am still very sensitive to histamine levels from having been on the Seroquel for 16 years and that histamine overload is what is causing the problems. If you look up Histamine intolerance all of these symptoms are listed. I am also having trouble with episodes of blurry vision that come and go. I thought it was dry eye but eye drops do not help. It just kind of comes and goes randomly. I have also had a flare up of systemic inflammation that has caused my spine to swell. This started a few days after I cut the morning dose in half.

More lessons in the power of Histamine and that messing with it is a bad idea.

Hopefully things will level out once I am off of it completely

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator

Hi FeralCatman,

I just wanted to let you know I added your post above to this topic:

Allergies, sneezing, stuffed up nose, sinus and what to use for allergy relief

 

And congratulations on getting off your Seroquel.

Also congrats on coming round to plan for future tapers.......that can be a really good thing.  And do keep in mind that not all tapers result in tough WD's.  At least I don't think that has to be the case. 

 

Is the doctor you mention in your first post someone that you might add to this topic?

Recommended doctors, therapists, and clinics

 

As you might have noticed......we have so many here wanting and searching for doctors interested and educated(or willing to be) in de-prescribing.

 

And welcome aboard.

Love, peace, healing, and growth,

moderator manymoretodays(mmt)

 

 

2022 May- continuing with limited activity on site, just something I need to do right now

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

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@manymoretodays Thank you. The doctor I spoke of is already on the list so no need to add her. I have additional information regarding the Allegra that I have learned and I think this may apply to any H1 blocker but can't be sure.

 

In addition to everything else I discovered something new. Back in August when I first stopped the Seroquel I started wearing a CGM sensor again and was getting really high blood sugar spikes and my A1C had jumped to 7. Those spikes calmed down within a few weeks especially with more exercise and I thought that was that. However, I have started wearing a CGM sensor again and have found that now that I am reducing my antihistamine (Also an H1 blocker like Seroquel) the big spikes are happening again. So, this confirms what I have been reading about histamine and blood sugar levels being directly tied together and since my histamine levels right now are high and having spikes so is my blood sugar. I never would have thought this to be the case but it certainly seems to be that the withdrawal is causing blood glucose spikes after I eat and during the waking anxiety I get right now from 3 - 7 am. It would be an odd coincidence since I have changed nothing else. 
 

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • Moderator

You will have to forgive me, but what does GCM stand for?

Yes, it would be an odd coincidence...... it does sound like your spikes in histamine and glucose correlate, while withdrawing from drugs that affect histamine.

 

Keep us posted, especially I'll be interested to see if this phenomena stops at some point, when your new Allegra dose is stable, or when you are finally off of it.

 

You are sleeping okay now? 

And then were you going to tackle starting another drug taper? 

 

Glad you are here, and contributing, learning, etc.

 

Happy New Year,  oh, well almost.......

L, P, H, and G,

mmt

2022 May- continuing with limited activity on site, just something I need to do right now

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016.  And.....I quit smoking 11/2021.  Can you say Hallelujah?(took me long enough)💜

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

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@manymoretodays That's alright. CGM stand for 'Continuous Glucose Monitor'. I use the Freestyle Libre 14 day sensors. Not much good for making medication judgements due to wide variations in accuracy between sensors but great for seeing trends over a period of time and much better than constantly sticking your fingers. I am now a non medication dependent diabetic as a result of Seroquel use. For many years I was on Metformin to keep my sugars down but no longer need it. I am hoping that once this is all done and I can drop a bit more weight that the diabetes will slowly fade away. Time will tell.

 

In 3-4 weeks when I am off the Allegra I should see an improvement in these spikes within a few weeks of stopping it especially once I am off the couch and back to exercising again. My guts are a mess right now and I have had to go to a liquid diet and stay near the 'facilities' so I am limited in what I can do right now but that will change in time.

 

I am sleeping fine and my sleep schedule is consistently back to where it was in the military. Early to bed early to rise.

 

At some point I will start tapering the Paxil because it causes bleeding and bruising issues and limits my ability to take NSAIDS for my Ankylosing Spondylitis and treating that is more important. Right now I can only take an NSAID for about a week before I start having issues. I am immune deficient and do not want to do injections so my treatment options are limited. I think my body is in medication rejection because most stuff just seems to make me sick at this point. Over 25 years of many meds will do that. I will probably not start tapering the Paxil until March 2023. I want to give my body plenty of time to heal and establish some sort of balance before I upset the apple cart again and I am really sick of all of this withdrawal crap. I need a long break. I am only on 10mg so it is a low dose any way.

 

Happy almost New Year to you as well 😉😺😺😺😺

Current Psychiatric Medications

  1. Paxil 10mg daily (a.m.) 2017 - Present
  2. Carbamazepine 400mg daily (split half a.m. and half p.m.) 2011 - Present
  3. Ativan 1 mg daily as needed  2018 - Present

Recently Stopped Psychiatric Medications

  1. Seroquel - Tapered from 700mg to 0mg From April 2018 to August 2021 - Final Dose 6.25mg - In Recovery

Past Psychiatric Medications From 1994 to April 2018 -  Depakote, Lithium, Risperidone, Xanax, Lamotrigene, Olanzapine, Lorazepam, Welbutrin, Trazodone, Oxazepam, Gabapentin, Abilify, Topiramate, Prazosin, Ambien (See Attached Spreadsheet And Seroquel Tapering And WIthdrawal Summary)

Current Non Psychiatric Medications Levothyroxine 88mcg (a.m.)-Vitamin D3 2000 IU (p.m.)-Crestor 5mg (p.m.)-Fexofenadine 420mg (Half in a.m. and Half in p.m.)   -Metoprolol 25mg (p.m.)-Azelastine Nasal Spray-Triamcinolone Nasal Spray-Ipratropium Bromine Nasal Spray

Other - Fish Oil Twice Daily-Multi-Vitamin (p.m.)-Vitamin C 1000mg Daily (a.m.)-Saline Nasal Spray-Benadryl-Salsalate 750mg twice daily PRN, Diclofenac Gel on affected joint PRN-Alpha Stim-M electrotherapy device (CES for sleep/anxiety/depression - TENS Pain)-Magnesium Glycinate 50mg-Quercetin 500mg

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  • ChessieCat changed the title to FeralCatman: recovering from Seroquel

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