FeralCatman: recovering from Seroquel

[FeralCatman]

21 hours ago, FeralCatman said:

@tsrangaI read the link that you sent and gave it some thought and here is what I think is most likely happening and as always it is multi-factorial. As I said I normally have trouble during the springtime anyways so perhaps that is just manifesting itself earlier this year so that could be part of the problem. This has been a really abnormal winter with crazy fluctuations in temperature and humidity which causes problems even with healthy people. Combine that with Post Acute withdrawal syndrome hypersensitivity in my nervous system and whatever symptoms that I'm going to get from that are going to be Amplified. Also according to my records the stress of those snow storms in Rapid Fire never allowed me to fully recover from the first one and I do think that it created a bit of a kindling effect in my nervous system. Combine those things into a nervos system blender and it's a recipe for feeling like crap. So for now I'm doing the only thing I can do which is to back down and lay low to keep my stress low and continue with an easy to digest diet which I don't mind doing and keep my physical activity to a minimum to allow my body to de-stress and then just wait and see how things go. Beyond that there isn't a whole lot else I can do other than endure it for however long this lasts. Switching the Magnesium formulation is already helping motivate my guts so it's pulling double duty and so far not causing any problems.

@tsrangaI think the reason I'm having trouble with the ginger is for the same reason as stated in this previous post and I think the same thing happened last year but it was far more severe because this time last year is when the food sensitivities and all the crazy stuff happened. Again I think this is multi-factorial and time of year is just one part of the equation but I also think that it will get better just like this year is much better than last year when it happened.  Last year I was reacting to butternut squash and then this fall I ate all 13 of the squash that I grew plus all of my acorn squash so I'm sure the same thing will happen with the ginger my system is just hypersensitive right now and needs some time to chill out. It doesn't scare me this time it's just frustrating.

[FeralCatman]

Last year prior to the onset of the severe symptoms I had a series of stressors just like this year and was also still pushing really hard with exercise and I ended up being really sick for several months and I think that was because I was very early in recovery. This year so far is not anywhere near as bad even though I had those really bad couple of days. It is very frustrating but seems to be par for the course. So as I said for the short term I will just hold off on the ginger and keep things very low key for a while and let my nervous system do its thing and minimize my discomfort as much as possible.

[FeralCatman]

Just wanted to take some time to say thank you again for everyone who contributes to this website and who has contributed to my thread. I wouldn't be able to get through this without all of your input and assistance and encouragement.  I know I am not all that Interactive on other people's threads but I do try and post things that I think people will find useful. I'm not a hugely social person which of course is part of why I live in the middle of nowhere with a bunch of cats. I was told by my best friend, and other people agree, that I remind them a bit of Sheldon from The Big Bang Theory though not quite that smart and certainly not quite that rude but you get the idea. Just know that I do think of you all and appreciate everything and I try and contribute in my own way. Keep healing 😉✌️😺😺😺

[FeralCatman]

This article explains a likely reason why I am having the same problem at the same time of year. It also explains why my endocrine system corrected at this time of year.

 

How Different Seasons Affect The Way Your Brain Works | HuffPost Impact

https://www.huffpost.com/entry/brain-activity-seasons-study_n_56ba26ffe4b0b40245c42d6a

 

This article completes the picture and also explains why upper body exercise like shoveling snow messed me up so much this winter. As my brain and nervous system recover it is still impaired and in the winter you're cerebellum shrinks naturally to conserve energy and it is the cerebellum that's responsible for complex body movements. As I am able to sleep more and heal further this will recover.

 

The Seasons Are Changing and So Is Your Brain | Discover Magazine

https://www.discovermagazine.com/health/the-seasons-are-changing-and-so-is-your-brain

[FeralCatman]

UPDATE

 

I just had an appointment with my nutritionist and we went over my new GI Map test results. There is significant improvement in my overall gut health and my microbiome is recovering quite well. Indicators for my gut immune health have gone from low to normal. Inflammatory markers are now normal. My pancreatic enzymes are still low but overall there is significant progress in healing the gut. 😁

 

In another week I will get the DAO enzyme test done to see if that is also recovering.

[FeralCatman]

I just posted this on 'In The Media'

 

 

[FeralCatman]

UPDATE

 

In looking at my spreadsheet this morning I can see a consistent upgrade in sleep quality since January 9th and at the time sleep was 6-7 hours. I am getting more days with fair sleep instead of poor sleep and even had one day with good sleep which is my highest ranking. Other than the 2 really bad days I just went through for which the change in diet to easy to digest pureed foods has definitely helped, my sleep time, though still broken went from 6-7 hours to 7-8 hours starting on February 5th. Not having much of an issue with depression any more but still having issues with anxiety and mild irritability on some days. The Nocturia has changed as well. Now even though I still am making too much urine at night my body is trying to hold it in to let me sleep. The cycle of holding lasts from 11pm to 5 am which is pretty normal. It kind of sucks because it makes it hard to pee for that time but at the same time it is a good sign that my body is figuring things out and trying to let me sleep. I bought 4 bedside pee jugs on Amazon so I don't have to get out of bed and that helps greatly. All I need now is for my body to figure out it needs to make the right amount of ADH at night to slow urine production and I should be able to sleep undisturbed. So, I am slowly getting there. Healing is happening.

[peaceandlove]

On 2/6/2023 at 10:51 AM, FeralCatman said:

@peaceandlove No I am not. This last upset from which I am recovering caused a bit of a slowdown in my digestion and some anxiety symptoms but no where near as bad as last year. I had to switch to an easy to digest diet for a bit but am now back to my full diet again. No vomiting or severe cramps or nausea this time and mostly just disturbed my sleep. I am recovering much quicker now.

so happy for you !! It’s the worst physical symptom in my opinion. I’m 9 months off can’t wait for this to go away for me and my GI system back to normal 

[FeralCatman]

10 hours ago, peaceandlove said:

so happy for you !! It’s the worst physical symptom in my opinion. I’m 9 months off can’t wait for this to go away for me and my GI system back to normal 

@peaceandlove I agree, the GI stuff is definitely the toughest part of this for me as well. It can be pretty scary. I am soon closing out month 17 and a lot of progress has been made but there is still more to come. I am hoping I am past the half way point but who really knows with this stuff. My nutritionist sent me this link and I do this for my vegetables and fruits and you may find it helpful.

 

https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/04/High-Calorie-Liquid-Diet.pdf

[Ambs9]

Hi @FeralCatman I noticed in a couple of your post you mention using a whey protein powder. Is there a specific brand you take/recommend?

[FeralCatman]

On 2/16/2023 at 9:08 AM, FeralCatman said:

This article explains a likely reason why I am having the same problem at the same time of year. It also explains why my endocrine system corrected at this time of year.

 

How Different Seasons Affect The Way Your Brain Works | HuffPost Impact

https://www.huffpost.com/entry/brain-activity-seasons-study_n_56ba26ffe4b0b40245c42d6a

 

This article completes the picture and also explains why upper body exercise like shoveling snow messed me up so much this winter. As my brain and nervous system recover it is still impaired and in the winter you're cerebellum shrinks naturally to conserve energy and it is the cerebellum that's responsible for complex body movements. As I am able to sleep more and heal further this will recover.

 

The Seasons Are Changing and So Is Your Brain | Discover Magazine

https://www.discovermagazine.com/health/the-seasons-are-changing-and-so-is-your-brain

I found another article on this same subject. Unfortunately it was in the 'Psychiatric Times' (BOOOO.... HISSSSS 🤬) so you can ignore anything it says about treatments. That said, they brought up an interesting idea about seasonal changes in mood and body function. Some studies have found that Seasonal Affective Disorder SAD may be related to seasonal changes in circadian rhythm and associated changes in the functioning of the Hypothalmic Pituitary Adrenal Axis (HPA Axis) and the way it releases and manages cortisol. Your HPA Axis plays a major role in your fight or flight response (anxiety) and also plays a huge role in controlling your Autonomic Nervous System (ANS) which manages everything from breathing and heart rate to digestion, urination, defecation, and glucose control. It's kind of like the master smart controller for all of those functions. If that is damaged or disrupted in any way then nothing will work right or work in proper synchronization which seems to be what withdrawal and recovery end up being all about.

 

Studies have found that men are more likely to experience SAD in the spring and summer and women are more likely to experience SAD in the fall and winter for reasons not understood. This matches what I have experienced for many years now in that I always tend to feel better in the fall and winter and worse in the spring and summer, especially anxiety wise. So, this would add in to the theory about why I am having an increase in symptoms at the same time this year as last year. Sunlight is changing, the sun is higher in the sky, the weather is even more unpredictable and my body is taking that que and initiating a seasonal response that at the moment is amplified and a bit dysfunctional due to a hypersensitive and disrupted nervous system due to being in recovery from Seroquel. Here is the article for those who want to read it.

 

https://www.psychiatrictimes.com/view/cortisol-and-seasonal-changes-mood-and-behavior

 

Please remember that everyone is different and this is only a theory as is almost everything in medicine but based on my experiences it makes sense that this is what is going on.

[FeralCatman]

5 minutes ago, Ambs9 said:

Hi @FeralCatman I noticed in a couple of your post you mention using a whey protein powder. Is there a specific brand you take/recommend?

@Ambs9 My nutritionist recommended 'Terra Brand' whey protein powder which is what I have been using and purchased it on Amazon. However, my local grocer has their own organic brands of a lot of stuff and after comparing ingredients I use that because it is cheaper. Take a look at the ingredients on the Terra brand powder and then shop around. I make sure to stay away from anything artificial as much as possible.

[Ambs9]

39 minutes ago, FeralCatman said:

@Ambs9 My nutritionist recommended 'Terra Brand' whey protein powder which is what I have been using and purchased it on Amazon. However, my local grocer has their own organic brands of a lot of stuff and after comparing ingredients I use that because it is cheaper. Take a look at the ingredients on the Terra brand powder and then shop around. I make sure to stay away from anything artificial as much as possible.

@FeralCatmanthank you so much! I am having gastro issues right now (doing the barium swallow test next week) and am struggling getting enough calories in

[FeralCatman]

UPDATE

 

It's been 2 weeks since I had that flare up of no sleep and some returning rather severe symptoms. I have to admit I went into 'Oh Crap' mode pretty quickly as my biggest fear was that I was going to go through what I did last year for the next couple of months. Thankfully, that is not materializing. Most nights I am still getting 7-8 hours broken sleep due to the ongoing nocturia. There have been no changes overall in daily functionality or my vision or my ability to drive. We had another snow storm Thursday and I was able to get out and clear snow just fine and was fine yesterday and did the 3 hour round trip drive to my PCP for my annual physical with no issues. He confirmed that the Nocturia is not prostate related which is good and I know that this will also go away in time as my nervous system heals up and normalizes. The only things I am still dealing with are a bit of heightened anxiety, nocturia, and since those 2 bad days an increase in gut sensitivity/motility which I am treating with an altered diet. I am doing a mile walk every day and that seems fine but I am still not doing any upper body exercise other than what needs to be done. I am going to force myself to just chill for awhile and let my system continue to calm down. Once the snow is gone and I am back to a full diet again I will try again and see what happens. Also, I am able to read for enjoyment again. I used to be a voracious reader but after a year or so on the Seroquel I was unable to follow a story line and would just get lost trying to read a book as I couldn't remember what I had just read and had to read things over and over again to be able to follow the story which of course is no fun and I finally gave up in frustration. I was told it was my advancing illness. Thankfully that ability seems to be returning after 17 months off of the drug. So, yet another thing I was told was my illness and not the drug has turned out to be due to the drug. The list of lies we get told about these drugs seems to be never ending. Overall, the progress that has been made in a year is very obvious. Healing is definitely happening. 🙂✌️😺😺😺

[peaceandlove]

On 2/20/2023 at 5:09 AM, FeralCatman said:

@peaceandlove I agree, the GI stuff is definitely the toughest part of this for me as well. It can be pretty scary. I am soon closing out month 17 and a lot of progress has been made but there is still more to come. I am hoping I am past the half way point but who really knows with this stuff. My nutritionist sent me this link and I do this for my vegetables and fruits and you may find it helpful.

 

https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2014/04/High-Calorie-Liquid-Diet.pdf

thank you soo much! 

[FeralCatman]

@peaceandlove You are very welcome, I hope you find that link helpful. 😉✌️😺😺😺

[FeralCatman]

UPDATE

 

I had another episode of almost no sleep a couple of nights ago with a return of the adrenaline surges and heightened anxiety. It was precipitated by a stuck gut. No change in diet. So, I seem to be having short 2 day waves with a few days or up to a couple of weeks in between. Still not anywhere near as bad as last year and hopefully this does not progress beyond what is already happening. Focusing on not going into 'Oh crap here we go again mode' and taking things day by day and just trying to appreciate every good day that I can. I think that when the weather is more consistent in April I will start to feel better again just like last year. As I have stated previously I think time of year has quite a bit to do with this.

 

Also, I finally finished my medication combination history and printed it out. It is the companion document to my medication history spreadsheet that is already posted in my drug history. It's about 7 feet long and has every medication combination I have been on with the color coded binding affinities for each neurotransmitter and its receptors listed below each drug. Looking at it like that it is easy to see why I am having so many issues and why this process takes so long. Over 28 years my nervous system has been repeatedly run through a psycho-pharmacological taffy puller. Looking at the color coded bars all laid out on my bed you can see my nervous system has been lit up like a blinking Christmas tree for 28 years. Recovery will take a long time and I realized I've made the right choice by not taking any medications or supplements to help ease symptoms. My nervous system is confused enough as it is and adding anything in that is neuro-active will just add insult to injury. I will be taking this to my next psych appointment to leave it with her for her and her students to get a look at. My PCP will see it as well. I don't have any more room for attachments so I can't post it but if anyone would like to see this for themselves I can send a copy. Message me and let me know. It provides valuable insight into the hazards of poly-pharmacy and once you know what the different neurotransmitters and their receptors do in the brain and body it is pretty easy to see where withdrawal and side effects come from.

[Believer]

@FeralCatman

Just wanted to stop by and thank you for all that you share. Your updates, links, learning, etc. I read all of them. Your acceptance of your situation and your calm manner is soothing in the midst of the scary unknown.

 

Thanks for being here.

 

Believer

[FeralCatman]

@Believer You're very welcome and I am glad what I am posting is helpful. As far as acceptance goes I am still working on that but I am realizing that getting upset about things just causes stress and stress impedes healing and makes symptoms worse so I am learning to just let go of things for now and make healing the priority whatever that needs to look like from day to day since this stuff changes all of the time. It is a work in progress and it is very hard but now that I understand things a bit better and have accepted this is going to take quite awhile longer it makes it easier to 'accept and flow' which is what really needs to happen right now. The rest of my life as I want it to be will just have to come a bit later. As far as my calm manner I am not sure you would think that if you were around me every day. It's tough to stay out of freak out mode and sometimes I fail. I am also pretty angry that this was done to me or done to anyone and that is probably the hardest part to get a grips on but I am getting there. All you can do is get up the next day and try again. Military service and having worked some high stakes high stress and dangerous jobs seems to have helped prepare me for something like this. I am glad for those experiences.

 

Take care and keep healing 😉✌️😺😺😺

[FeralCatman]

I just posted this under symptoms and self care regarding exercise and dysautonomia which is basically what much of withdrawal seems to be. Some may find it helpful especially those who are severely ill during PAWS.

 

 

[FeralCatman]

I have a question for the Moderators or anyone else who has knowledge of this problem.

 

I have been having issues with Nocturia for about a year now. It was getting better in the fall but is flaring up again along with my other symptoms. I think this is due to seasonal changes and associated changes in cortisol levels etc. combined with a post Seroquel Nervous system hypersensitivity. I was looking up tests for Nocturia and found the following link which is for Mental Health Providers.

 

https://simpleandpractical.com/siadh-diagnosis/

 

In this link it says that  Inappropriate Secretion of Antidiuretic Hormone (SIADH) which causes urinary issues can be caused by pretty much all of the psychiatric medications but especially 2 that I am still on. Carbamazepine and Paxil. SIADH can become deadly in extreme cases and this is in fact what landed me in critical care in the hospital in 2018. My recent blood work was fine and sodium and potassium levels were fine. I have forwarded the link to my PCP to see if he thinks testing is warranted.

 

My question to the moderators is, does this new factor increase the urgency in tapering off the other 2 medications? I had been planning on holding off until things are stable for a year but now I wonder if this is even possible while still on the 2 medications. Input would be greatly appreciated as I really value what people on this website have to say over pretty much any so called 'Medical Professional'.

 

Thanks Kindly.

[FeralCatman]

On 2/28/2023 at 8:44 AM, FeralCatman said:

Also, I finally finished my medication combination history and printed it out. It is the companion document to my medication history spreadsheet that is already posted in my drug history. It's about 7 feet long and has every medication combination I have been on with the color coded binding affinities for each neurotransmitter and its receptors listed below each drug. Looking at it like that it is easy to see why I am having so many issues and why this process takes so long. Over 28 years my nervous system has been repeatedly run through a psycho-pharmacological taffy puller. Looking at the color coded bars all laid out on my bed you can see my nervous system has been lit up like a blinking Christmas tree for 28 years. Recovery will take a long time and I realized I've made the right choice by not taking any medications or supplements to help ease symptoms. My nervous system is confused enough as it is and adding anything in that is neuro-active will just add insult to injury. I will be taking this to my next psych appointment to leave it with her for her and her students to get a look at. My PCP will see it as well. I don't have any more room for attachments so I can't post it but if anyone would like to see this for themselves I can send a copy. Message me and let me know. It provides valuable insight into the hazards of poly-pharmacy and once you know what the different neurotransmitters and their receptors do in the brain and body it is pretty easy to see where withdrawal and side effects come from.

I was able to get a few attachments cleared out that didn't need to be there so I am uploading the completed document for those who are interested in seeing what it is all about. I found the perspective it provided to be enlightening. I could not upload the summary of Wikipedia articles on neurotransmitters and their receptors because it exceeded size requirements but if you look up each listed neurotransmitter on Wikipedia you can see very clearly how severely these medications affect not just the brain but the entire body. It's also pretty easy to see where side effects come from once you know more about what these neurotransmitters actually do and where they are located in the body. My Psych provider will be getting a copy for use with her students as well as my PCP. I am also attaching my other associated documents to this post and will then include a link to this post in my signature so that everything stays together.Quitting Seroquel_A Vacation In Hell_Redacted.pdfmedication history spreadsheet.xlsxA Path To Healing.docxFoods To Heal.docxSecondary and Tertiary Side Effects of Seroquel.docx

MEDICATION HISTORY PROJECT PART 2 -WHOLE HEALTH ADVOCACY AND THE RISKS OF POLY PHYARMACY.xlsx

[FeralCatman]

I just posted this in Finding Meaning.

 

 

[FeralCatman]

I just posted this in Symptoms and Self Care regarding gentle exercises and using some Shaolin Buddhist practices to help with healing.

 

 

[FeralCatman]

On 2/17/2023 at 2:35 PM, FeralCatman said:

UPDATE

 

I just had an appointment with my nutritionist and we went over my new GI Map test results. There is significant improvement in my overall gut health and my microbiome is recovering quite well. Indicators for my gut immune health have gone from low to normal. Inflammatory markers are now normal. My pancreatic enzymes are still low but overall there is significant progress in healing the gut. 😁

 

In another week I will get the DAO enzyme test done to see if that is also recovering.

 

UPDATE

 

I just received the results of my DAO Enzyme test. DAO is the enzyme used to process histamine in the gut and is one measure of Histamine Intolerance which many people in withdrawal and PAWS seem to suffer from. My levels have increased significantly from 6.0 last July to 9.5 in March 2023. That is a 35% increase in 7 months. 10 or above is considered normal. So, my Histamine Intolerance has significantly improved and is nearly gone. So, as my gut function heals so does the Histamine Intolerance. This was done with a low histamine diet, pre-biotic foods, reducing my medication load by stopping the Nexium and Crestor and strict avoidance of dairy, gluten, caffeine, and alcohol. No supplements or pro-biotics other than my vitamins, magnesium, and fish oil. So my path to healing plan that I uploaded seems to be working. Alcohol is one of the worst substances with respect to histamine intolerance and resulting food sensitivities. Alcohol has a huge suppression effect on DAO which then of course suppresses DAO function and can lead to or worsen a Histamine Intolerance. I suspect in another year it will be gone altogether and my gut profile will look much better as well. This also makes me suspect that my allergist is correct in that the sensitivities to Corn, Wheat, and Soy that were detected will also normalize as my body recovers homeostasis. This summer I may start slowly cutting back on the Allegra or the Metoprolol again since they are both drugs that inhibit DAO function. I won't be disturbing my CNS again with a psych med taper for quite awhile, I need a break from the craziness where I can just live normally for awhile, but cutting those back will aid in increasing gut function. I haven't decided on that yet though. Slower is Faster. Healing is happening 😁✌️😸😸😸

[FeralCatman]

I just posted the following under "Eating / food as an activating factor (Increasing anxiety or symptoms)". Some may find it helpful so I am re-posting it here.

 

 

[FeralCatman]

In addition to what is covered in the above post I would like to add that it plays into what I am going through this year again albeit at a reduced intensity.

 

This time of year has always been tough for me anxiety wise. In the past I attributed it to allergies and the end of ski season. However, that doesn't apply this year. This year I am actually happy to see winter go and there are no allergens as everything is still frozen and buried and the winds have been coming out of the North and East every day. No mold yet either so that allergen theory no longer flies. Instead this is what I seem to be dealing with that is increasing my body stress levels and exacerbating what I discussed in the previous post.

 

1) Increasing sunlight is triggering normal seasonal responses in the CNS which right now, due to being in recovery, is actually adding to my body stress levels while it tries to cope with so many things changing.

 

2) Weather, temperature, humidity, and pressure are highly variable right now. This forces the body to have to adapt to changing conditions rapidly which in a compromised state such as during withdrawal is overloading my body and causing stress.

 

3) The increase in symptoms is creating psychological stress which doesn't help.

 

4) My exercise tolerance has been reduced a bit due to all of this and so reduced exercise also does not help stress levels.

 

5) All of this is adding to the combined stress effect I talked about in my previous post and as such is degrading my digestive ability and creating symptoms.

 

As I have said, this year is much better than last as last year I had crippling anxiety every day for several months among all of the other things I was dealing with as well as only getting 0-2hours of sleep every day. This year I am still mostly getting 7-8 hours of sleep. Last year things started to stabilize for me during the second week in April so I would expect that things should calm down in a few weeks as things stabilize season wise. We shall see but it makes sense based on historical data and the research I have done.

[FeralCatman]

UPDATE

 

OMG!!!!! I can drink Chamomile tea again. OMG!!!!! Yay for Chammomile tea..... and it helps just like it always has. So nice to have it back 😁✌️😺😺😺

[FeralCatman]

On 3/16/2023 at 8:59 AM, FeralCatman said:

In addition to what is covered in the above post I would like to add that it plays into what I am going through this year again albeit at a reduced intensity.

 

This time of year has always been tough for me anxiety wise. In the past I attributed it to allergies and the end of ski season. However, that doesn't apply this year. This year I am actually happy to see winter go and there are no allergens as everything is still frozen and buried and the winds have been coming out of the North and East every day. No mold yet either so that allergen theory no longer flies. Instead this is what I seem to be dealing with that is increasing my body stress levels and exacerbating what I discussed in the previous post.

 

1) Increasing sunlight is triggering normal seasonal responses in the CNS which right now, due to being in recovery, is actually adding to my body stress levels while it tries to cope with so many things changing.

 

2) Weather, temperature, humidity, and pressure are highly variable right now. This forces the body to have to adapt to changing conditions rapidly which in a compromised state such as during withdrawal is overloading my body and causing stress.

 

3) The increase in symptoms is creating psychological stress which doesn't help.

 

4) My exercise tolerance has been reduced a bit due to all of this and so reduced exercise also does not help stress levels.

 

5) All of this is adding to the combined stress effect I talked about in my previous post and as such is degrading my digestive ability and creating symptoms.

 

As I have said, this year is much better than last as last year I had crippling anxiety every day for several months among all of the other things I was dealing with as well as only getting 0-2hours of sleep every day. This year I am still mostly getting 7-8 hours of sleep. Last year things started to stabilize for me during the second week in April so I would expect that things should calm down in a few weeks as things stabilize season wise. We shall see but it makes sense based on historical data and the research I have done.

UPDATE

 

I just am coming out of a flare up that lasted a week. It was severe and very distressing with similar symptoms to last year returning again like they did in early February. It was precipitated by a transition back to a more normal diet and resolved by going back to the easy to digest diet. Symptoms were as follows.

 

1. Increased general anxiety and worry.

2. Decreased ability to sleep. Several nights were only 0-2 hours.

3. My body started to panic as soon as I would lie down, especially if I lay on my side which is how I usually sleep. I had to try to sleep sitting up on my couch. I actually just bought a cheap recliner for me to use if and most likely when this happens again.

4. At night I started getting adrenaline surges before I had to urinate.

5. Gut distress.

6. Increased BP which fortunately was kept down by the metoprolol.

7. Cortisol surges at 3 am and again around 3 pm which both took several hours to dissipate.

8. 2 days were so bad that I can only equate it to a 48 hour panic attack. It was like the feeling you get cresting the first big hill on a roller coaster and getting a look down the hill and then staying in that state for 48+ hours. It was brutal. You don't realize how much time can be stretched out until going through something like that.

9. Became extremely cold and had to bundle up in the house even though I turned the heat up to 72.

10. Pain in the muscles/tendons in my thighs, calves, arms, neck, and shoulders

11. Any exercise at all made things worse not better.

12. Sudden very high blood sugars which have now recovered as of this morning.

13. Cold hands and feet.

 

Basically my body just went insane and pretty much crippled me for the 2 days at the end of it.

 

Other symptoms of last year like extreme fatigue, blurry vision, sound and light sensitivity, inability to drive distances, inability to work on the computer for extended periods, etc. have still not come back which is good so there is solid improvement over the last year.

 

So this is not a complete relapse but it does force me to re-calibrate my thoughts of where I am in my recovery. As I mentioned there seems to be a spring seasonal component where my overall body stress levels go up which leaves my tolerances for other stresses very low. The biggest triggers seem to be gut distress coupled with excessive physical exertion. Any psychological stress just adds to the issues.

 

Now that I have put these things together I won't be able to fully judge my progress again until this time next year when I see what happens starting next February 2024 so I have to put any further increases in % recovery off until then. So, another year to go at least until I really know. Sucks but what can you do. This is recovery as I have been reading about and this was one nasty wave of symptoms for sure. Very scary. So, for the next year I will focus on diet and continued gut healing and staying as active as my body will allow and will just have to see how things go. Since all of my tests have come back normal this is all Autonomic Nervous System Dysfunction typical of withdrawal and PAWS. I have found a neurologist within reach that specializes in Autonomic Neuropathy (Autonomic Nervous System Damage) and am discussing getting a referral with my PCP today. My insurance also fully covers home health care so I am looking into that so I can set things up if ever needed.

 

For those that read this don't let it discourage you at all. This is part of the process and though I had hoped I was further along, reality has other ideas and sometimes that's just the way things go in life. So, onward and upward. Healing has definitely happened and will continue to happen just not at the pace I would like to see. I am now in my 18th month off of Seroquel. It's been 58 Months (4 years 10 months) since I started tapering the Seroquel in April 2018. 😉✌️😺😺😺

[Catina7]

Thanks for the update @FeralCatman!  It sounds like you are doing everything right & doing the best you can...sometimes that's all we can do!  I deal with crippling anxiety from my Effexor taper & cannot titrate down anymore until I feel more stabilized; I don't know how many years it will take me to get off.  Your perseverance and patience is encouraging to me.  😺

[FeralCatman]

@Catina7The hardest part about this is accepting the fact that there are just parts of it that are out of your control and that your body is going to do at its own pace regardless of what you do.

[FeralCatman]

UPDATE

 

I just had a meeting with my primary care provider. We discussed sending me to that neurologist I mentioned and he said he would be happy to give me the referral but he also doesn't think that the neurologist will tell me anything more than I already know and that at this point I am most likely more of an expert on what is going on then what any doctor or specialist would be able to tell me.  He said best thing to do is to continue doing what I am doing and simply wait for this to heal up.  We also discussed how much longer this will take and we both agreed that I am probably looking at another two or three years for this to fully heal and he hopes that it will be sooner but it is very likely to continue that long and slowly get better over time. At this point I agree with him on both points and so I'm going to settle in for the Long Haul and accept it and if it gets better sooner than what I expect that will be great and if not then at least will not be disappointed. He also agreed to give me a referral when I am ready for a home health aid so I can set that up for if it is ever needed from time to time that way if I do need it I won't have to scramble at the last minute when I'm already struggling. As I said previously don't let this discourage you as it is just part of this process and as stated in many places on this website this process can take a very long time and that's all this is. It is disappointing no doubt but reality often is. All you can do is keep putting one foot in front of the other until you get to the place you want to be. 

[tsranga]

8 hours ago, FeralCatman said:

We also discussed how much longer this will take and we both agreed that I am probably looking at another two or three years for this to fully heal and he hopes that it will be sooner but it is very likely to continue that long and slowly get better over time. At this point I agree with him on both points and so I'm going to settle in for the Long Haul and accept it and if it gets better sooner than what I expect that will be great and if not then at least will not be disappointed.

 

If my experience is any indication, it does get better over time. I am into my 5th year of withdrawal, and over the last month, I can definitely see more signs of resiliency and stability despite experiencing daily symptoms triggered by the weather changes. 

 

If you can, you must try myofascial release PT, as I feel that it has made a huge difference in my body's  ability to recover faster from a stuck state.

[FeralCatman]

@tsranga Thank you for the suggestion. I looked up Myofascial Release and there is only one practitioner within 100 miles and she doesn't take insurance. I live in a very rural area. Mostly loggers, farmers, atv trails, and hiking trails. Medical resources are relatively basic. The closest hospital is half an hour away on a good day. We have no police or ambulance where I live and only a volunteer fire department with 2 trucks and the county sheriff. My PT and PCP are 80 miles from where I live which is why I use mostly telehealth for all but the PT or imaging / lab work or if my PCP needs to poke and prod. Whatever treatments I receive will be self applied and at this point given some of the reactions I have had I think it is best to stick with that. I have a very hard time trusting anyone putting their hands or treatments on or into my body at this point. My plan is to continue with a good diet that I can tolerate that is gut healing gut friendly, stress reduction, continued isolation to keep stress down, vagus nerve healing exercises and meditation, exercise/stretching as tolerated, and spend as much time outdoors on my property as possible for some good old fashioned forest bathing. Other than that it will just be a matter of time and periodic experimentation to see where I am at. Certainly not what I had hoped for healing wise but it is what it is. As I said, onward and upward. 😉✌️😺😺😺

[Thorin]

Feralcatman I don’t know where you live but it sounds amazing.

[FeralCatman]

@Thorin It is amazing. It's beautiful where I am. It's why this is so frustrating because right now I can't get out and enjoy most of it the way I want to and am used to. I just have to keep reminding myself that what I am going through is not permanent and that in time I will be able to get back out there again. So, my focus until then is very simple and single minded. Do everything I can to support healing which includes staying isolated and avoiding illness and injury until I am strong again and maintain a strict routine that revolves around healing practices that support the process.

 

I won't have too many updates to post from here on out since I won't truly be able to gauge progress until this time next year unless there is some sort of drastic change between now an then. I am hunkering down into the waiting game mode. One thing I noticed after these 2 recent episodes is that my blood sugar no longer spikes much above 140 even on a diet heavy in rice which is very new for me so there seems to be another endocrine correction happening again this year, same as last year. Just over a year ago rice would cause a spike up to 250 or more. Even just a few months ago the rice would spike things up to 170/180. Either I am producing more insulin or the insulin resistance is now gone. Without testing again I cannot say which. However that is strong evidence of continued healing. If it is my pancreas healing then hopefully it will also start to increase production of digestive enzymes to help my gut heal and so I will be able to better extract all of the benefits out of my diet. I get the digestive testing done again in December of this year. I will continue to check my thread and post any new information I think is relevant but my posts will probably not be as frequent. Anyone who wants to get in touch, ask questions, etc. can message me and I will get an email and will know to log on and respond.