FeralCatman: recovering from Seroquel

[ChessieCat]

Whatever the cause, eating a "proper human diet" as Dr Ken Berry calls it, should be beneficial.

 

I have my own N=1 experience.  I have been taking Vit D3 for years.  I didn't get my covid vaccination until the end of last year and have never caught covid.  This year In April I reduced my D3 and stopped it in May.  Our winter in Australia is middle of the year and I don't go out in the sun much anyway.  I got a flu (not the testable flu and it wasn't covid) at the start of June and was sick for 4 weeks.  I was almost over that when I got a cold which I had for about 4 weeks.  After 1 week of the cold I learned that D3 is needed for our immune system and the light went on! so I restarted the D3.  I don't think it was just coincidence.  I've since found some videos online about research of D3 and people in the UK getting covid and where they live and the amount of sun they get.

[FeralCatman]

@HeathSome things really are just unexplainable. My primary care doctor is of the opinion that once my nervous system and immune system level out post Seroquel that these allergies may very well go away so I will be getting tested again in another year. I have an appointment with my nutritionist next Tuesday to get her recommendations because I'm going to deal with this through diet. I tried allergy shots in the past and had a delayed hypersensitivity reaction which ended up being the one and only time I used my Life Alert button to call an ambulance because I was blacking out so allergy shots are out. There is no way to really know what is causing this for sure and it is frustrating. Personally I think that this is drug or drug withdrawal induced and I think my primary care doctor is correct that at some point most of this will clear up. It really upsets me that all this information is published and has been out there for a long but I was not warned or properly informed before I agreed to this course of treatment. It is the complete lack of informed consent that really gets under my skin.  I'm sure everyone on Surviving antidepressants feels fairly similar. In the meantime I'm trying to look at this as another opportunity to learn about my body and healthy living.

[FeralCatman]

13 hours ago, ChessieCat said:

Whatever the cause, eating a "proper human diet" as Dr Ken Berry calls it, should be beneficial.

 

I have my own N=1 experience.  I have been taking Vit D3 for years.  I didn't get my covid vaccination until the end of last year and have never caught covid.  This year In April I reduced my D3 and stopped it in May.  Our winter in Australia is middle of the year and I don't go out in the sun much anyway.  I got a flu (not the testable flu and it wasn't covid) at the start of June and was sick for 4 weeks.  I was almost over that when I got a cold which I had for about 4 weeks.  After 1 week of the cold I learned that D3 is needed for our immune system and the light went on! so I restarted the D3.  I don't think it was just coincidence.  I've since found some videos online about research of D3 and people in the UK getting covid and where they live and the amount of sun they get.

I was diagnosed with a vitamin D deficiency years ago. After that I added 2000 IU daily of vitamin D to my routine and it made quite a difference in the number of colds per year I had to deal with. I also get plenty of sun as well but ended up with the deficiency anyway. This is why I have come to find that periodic vitamin and mineral blood tests are very helpful because just like anything else things change over time and the only way to really know is to test. It's the same thing with these newly found allergies. It could be something that would have happened any way, it could have been due to diet, or it could be due to being on the meds or withdrawal. It is possible that a year from now they will be gone. It is equally as possible that they will get worse. The only way to know is to test and test and test again. Fortunately for me I have good insurance and a doctor that agrees with the way I want things done. I am glad I found out even though it does kind of suck because it will help me keep my misery levels to a minimum and will help me to live as healthy as possible.

[FeralCatman]

UPDATE

 

I know many people on this site are not from the USA but here in the USA today is Thanksgiving so I thought I would post these statistics today even though it is not the end of the month because they are definitely something to be thankful for.

 

September 24, 2022 was definitely a major turning point for me. Since then my days have been much better. Here are the statistics for the 61 days since then.

 

Bad Days                0      0%

Mediocre Days      11    18%

Good Days            23    38%

Normal Days         27    44%

 

Days at Good or Better     50     82%

 

Sleep 6-8 hours broken sleep on average

 

Sleep Quality     Poor  -  51%   

                             Fair  -  49%   

                          Good  -   0%

 

From the day I started tapering Seroquel it took 4 years 5 months and 24 days to get to my turning point

 

From the day I jumped off of the Seroquel it took 1 year 1 month and 24 days to get to my turning point

 

These are the statistics for November 2022 only

 

Bad Days                0      0%

Mediocre Days       2      9%

Good Days            10    44%

Normal Days         11     47%

 

Compared to previous months it is a massive improvement and you can see over the last 61 days there has been a dramatic change in my days and my sleep time and quality is still very slowly improving.

 

I am definitely still not recovered fully. I still have to be very careful with stress and diet and still have some symptoms but they are much more tolerable. Gentle exercise seems fine but for some reason upper body strength exercise still seems to be a trigger though not as severe as before. I can now drive as much as I want with no issues. I am back to walking most days and do gentle stretching and a few push ups every day. I have taken several short hikes with no weight on my back and will be trying it with a backpack soon. My back injury is fully healed as well.

 

So despite the new found allergies to wheat, corn, and soy and ongoing symptoms this is all something to be very thankful for. I have much more confidence now in an eventual full recovery and am looking forward to a good ski season.

 

Happy Thanksgiving everyone and thank you for all of your input. It's made all of this so much more bearable. 😉✌️😸😸😸

            

[FeralCatman]

UPDATE TO THE UPDATE

 

I forgot to add to my previous post that the bulk of my days now are free of anxiety and depression. I get short-term blips of anxiety and depression and sometimes mild anxiety on waking but it's very minimal.

[PortugueseSea]

I love your format, I am going to adopt it, at least partially, great job recovering. Step by step!

 

[FeralCatman]

@PortugueseSeaSlow and steady seems to be the key to getting through this and having patience. As I said I am not recovered yet but it is nice to have come over what seems to be a very large hump and the view definitely looks better on this side. I am so glad I decided to hold off on changing any other medications for a while because I think if I had done it too soon I would be a real mess right now so a long hold in between meds seems to be the thing to do. I'm glad you like the format and I hope you find it helpful. I know that I have found it very helpful to keep close track of things so I have a way to see my progress. Being able to see progress clearly has been and continues to be key. Best wishes from me and my kitty crew on your recovery. 😉✌️😸😸😸

[FeralCatman]

Not sure where I could put this so I just put it here.

 

Both links are to the same article but one has things illustrated and the other does not. It's a lot to read and digest and I will have to read them several times to really begin to understand it all but it does discuss the importance of acetylcholine in neuro-immune regulation. After a first pass read it seems like many of our symptoms may be coming from our nervous systems over reacting to normal immune responses which could explain things like food sensitivities during withdrawal and acetylcholine plays a significant part in this. Also, it seems that it may work in reverse and a dysregulated nervous system could overstimulate the immune system and generate symptoms.

 

Autonomic Nervous System and Immune System Interactions

 

https://pubmed.ncbi.nlm.nih.gov/24944034/

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374437/

[FeralCatman]

The above articles may help to explain the triggering of anxiety after eating, especially with foods that tend to generate an immune inflammatory response such as sugar, dairy and gluten which is why many people end up on some variant of the gluten free - dairy free - low carb diet and it helps their symptoms because it is calming the immune inflammatory response which then quiets the neuro-immune pathways which calms the nervous system or at least doesn't ramp up the nervous system. The same could be said for the low histamine diet. It also potentially explains why coming off the Allegra was so hard. Until the histamine receptors return to normal numbers of receptors and normal functioning the histamine nerve signaling is all out of whack so anything that causes production of histamine would send the histamine nerve signaling through the roof and trigger further over reactions in the ANS and generates all kinds of crazy symptoms some of which mimic an allergic reaction.

 

In summary this may not just be an oversensitive nervous system but an over sensitive neuro-immune response. The good news is that over time for most people this should all calm down and symptoms should become less severe and eventually go away. My recently diagnosed food allergies are probably part of this overactive neuro-immune response and should eventually calm down.

[FeralCatman]

In addition to the above post I just posted this in Symptoms and Self Care. They Hypothalamus regulates the Autonomic Nervous System (ANS) which as mentioned in the above post is responsible for Immune System regulation. Disrupt the the hypothalamus and you disrupt the ANS which then disrupts the immune system. Also, there are thousands of feedback loops in the body both positive and negative which feed back into the brain and its hypothalamus to give it information it needs to make adjustments and maintain homeostasis in the body. One of the result of these medications and WD / PAWS is that all of these feedback loops are disrupted and the information is basically corrupted which makes it impossible for the body to maintain homeostasis and leads to all kinds of side effects and disease such as diabetes and thyroid issues.  Adding meds to manage these effects only increases the chaos.

 

 

[FeralCatman]

In doing all of this reading and adding it to my experiences over many years on many drugs I have come to a few conclusions I'd like to share that people may find helpful.

 

At one point I was on 6 psychiatric meds simultaneously including 2 anti psychotics as well as 9 other drugs to manage the side effects. I was a medication dependent diabetic with high blood pressure, high cholesterol, hypothyroidism, my hands shook so bad at one point I could barely hold onto a coffee cup, I was badly hung over every morning from the Seroquel, had double vision for a few years that when it came on I had to keep one eye covered so I could see, for over a year after my last hospitalization my skin felt sunburned, for a few months I had parkinsonian syndrome, and there are many other things that came and went over the years. I also suffered through some serious abuse as an inpatient.

 

I survived.

 

Of all the drugs I was on the anti psychotics, both typical and atypical, are by far the most disruptive of the psychiatric medications. They are incredibly toxic. If you look at the receptor binding profiles of the anti psychotics they pretty much bind with every receptor in the nervous system and disrupt the behavior of all of the neurotransmitters from day one and make a mess of everything. I have been on 5 over the years.

 

I survived.

 

Now that I am off the Seroquel, even though early on I couldn't see this, I am quite clearly slowly healing from the damage. I expect there will probably be some residual effects for the rest of my life but at this point I feel that the bulk of the damage and disability will heal with time and proper management. Healing is most definitely happening.

 

I am healing.

 

I still have 2 psychiatric medications to taper plus 2 non psychiatric drugs to taper. It will take a long time and given my experiences and what I have read of others a long hold between drugs is best because it allows time for healing before insulting the body again. However, in the end healing will happen even if the process is miserable at times as I do it.

 

I will survive.

I will heal.

 

The body is an amazing thing and it seems to know what to do to make itself better even though it's hard to see that when you are going through it. I still have days where that is hard to see. It just takes time and setting up good conditions for healing. The 2 things I have learned most of all......

 

I will survive

 

I will heal

 

So will you. 😉✌️😻😻😻

 

 

[Heath]

@FeralCatman WOW!!

 I really hate that you had inpatient abuse. I’ve heard of that and it makes me mad. 
 

It is something how we can look back and see clearly what really was what. It makes you think in another 5 years what we will see that really was right now🤔. 
 

When I started Paxil I developed dry sinus infections , even had surgery recommended by the dr. That didn’t help. Six years later after a cold turkey sinuses were miraculously healed poof! And of course the stomach dr made plenty of money too. They all make half their money off side effects. 
 

Thank you for sharing that the way you did, it encourages all of us. It really means a lot. We can do it 💪

[Heath]

On 11/22/2022 at 7:27 PM, FeralCatman said:

Personally I think that this is drug or drug withdrawal induced and I think my primary care doctor is correct that at some point most of this will clear up.

I also agree with this. I will go a step further and say a lot of things like digestion, diabetes, thyroid etc. are affected by these drugs and will eventually get better after psychiatric drugs. 

[FeralCatman]

@Heath My experiences tell me that 'One Flew Over the Cuckoo's Nest' is not an inaccurate depiction of inpatient wards. Reality can actually be worse than what was portrayed. It's really unfortunate and sad and IMHO criminal the way you get treated when you go for help. There is not enough money on the planet to get me to go anywhere near one of those places ever again. Anyone who would try will be in for the fight of their lives.

 

In looking back over the last 28 years of 'help' and all of the things I endured one thing has become very clear. Miracles do happen because it is a miracle I am still alive and breathing. By all logical reasoning I should have been dead a long time ago. I am very fortunate. Many are not this fortunate. I've seen horrible things done to people who went for 'Help'. I realized this after my last hospitalization. That was the worst one. They ended up having to do an emergency transfer to the medical unit in the middle of the night. They had wanted to send me to the ICU but it was full. They did a 200mg seroquel drop at the same time they CT'd my carbamazapine due to dangerously low sodium caused by trileptal and cut my synthroid in half. They tried to counter the effects with 1mg of ativan twice a day. My guts shut down and everything in them turned rotten. My kidneys started to shut down. I developed a crazy looking arrhythmia that completely spooked the nurses in the medical unit. I was leaking violently from both ends. They had to call in a kidney specialist. I had started into cardiac arrest territory and my sodium dropped to 123. 125 is the borderline to coma and death. It's a miracle I walked out alive. It took years for my EKG to go completely back to normal.

 

So many other things happened over the years that I am just finally putting together now that sometimes I feel like I must have internal organs made of kryptonite because if that were not the case I would be dead.

 

It's this experience that makes me warn people again and again to not mess around with these meds and to taper very very slowly and carefully. To not do so could literally cost you your life.

 

I am glad people are finding my posts helpful. My goal is to take all of my experiences and suffering and use it to help other people with this process and to get through it safely. 😉✌️😺😺😺

 

 

[PortugueseSea]

On 11/29/2022 at 11:01 PM, FeralCatman said:

The body is an amazing thing and it seems to know what to do to make itself better even though it's hard to see that when you are going through it. I still have days where that is hard to see. It just takes time and setting up good conditions for healing. The 2 things I have learned most of all......

 

I will survive

 

I will heal

 

So will you. 😉✌️😻😻😻

Standing applause. We are healing, we will make it!

We are survivors!

[FeralCatman]

14 hours ago, PortugueseSea said:

Standing applause. We are healing, we will make it!

We are survivors!

During my time in the military I had the opportunity to spend some time around various Special Forces personnel. The people on this website who are going through all this are as tough has any special forces operator I ever had the opportunity to meet and interact with.

 

Kudos to you all. You are all survivors and you will all make it.

[FeralCatman]

I just posted this about the GUPTA program. It has a link to their you-tube channel for anyone interested.

 

 

[FeralCatman]

I just posted this in Off Topic. It is about psychiatric care advance directives in the USA.

 

 

[FeralCatman]

UPDATE

 

I had a meeting today with my Immunologist. Very cool guy who is also a researcher and a professor. I like him because he freely admits that modern medicine is still very much in the dark about most things and that what they do now for treatments is really just a 'best guess at the moment with the best available information'. A nice honest answer and I respect that. We discussed a number of things.

 

1.) Food Allergies - The numbers I had were not really that high and do not indicate an allergy so I am not sure why my other doctors medical assistant told me that. So, this is good news. They actually indicate a possible mild sensitivity but I won't know until I experiment with those foods again. They may actually not mean anything. It is possible that they are slightly elevated due to the effects of withdrawal from the Seroquel. I will test the foods out in the new year and will get the blood tests done again in a year.

 

2) Immune Deficiency (Hypogammaglobulanemia) - This may very well be caused by the Carbamazepine that I take. Apparently all of the Anti-Epileptic drugs like Tegretol, Depakote, Trileptal, etc. can cause this issue. Here are some links on the subject.

 

https://www.researchgate.net/publication/6323945_Transient_Hypogammaglobulinemia_After_Antiepileptic_Drug_Hypersensitivity

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1074377/

https://pubmed.ncbi.nlm.nih.gov/20371963/

https://pubmed.ncbi.nlm.nih.gov/22251925/

 

3) Seroquel Withdrawal - I talked to him about my idea that withdrawal is not just a nervous system SNAFU but it is actually a withdrawal induced Neuro-Immune condition. He agreed. As I learned through my own research he explained that there is a lot of cross talk between the nervous system and the immune system and they both use the same chemistry to communicate internally and externally. You cannot affect one without affecting the other. They work hand in hand. The relationship between the 2 systems is incredibly complex and very poorly understood. He told me they are buried in data and are no where near being able to coherently sort all of it out. Another honest and true answer. So, this may explain why withdrawal symptoms are so incredibly diverse and why they last as long as they do. It is not about simple corrections to neurotransmitter receptor sites it is about hardwired neural connections that have been built up while on the drug as well as new hard wired responses in the immune system that have built up while on the drug. So, you are not just normalizing your nervous system and brain you are also having to normalize your immune system as well. A depleted gut microbiome due to the drugs and / or poor diet plays a role in this imbalance and a good diet plays a significant role in the recovery. And of course with drugs like Anti-Psychotics they have recently discovered that those drugs concentrate in your bone marrow and immediately start killing it. Here is an article on that recent study.

 

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

 

So, none of this is a simple as psychiatry likes to make it out to be. Shocker.

[peaceandlove]

Hey i am experiencing GERD since my adverse reaction 8 months ago. It’s like my digestive system doesn’t work or something. Acid reflux, burping, constapation, ibs like symptoms, burning stomach. Im going to the doctor next week but I doubt they will be any help 😞

it makes me so sad & it’s so stressful & uncomfortable. I don’t know what to do. I’m eating low acid diet of course. 

did your GERD go away yet ?

[FeralCatman]

13 hours ago, peaceandlove said:

Hey i am experiencing GERD since my adverse reaction 8 months ago. It’s like my digestive system doesn’t work or something. Acid reflux, burping, constapation, ibs like symptoms, burning stomach. Im going to the doctor next week but I doubt they will be any help 😞

it makes me so sad & it’s so stressful & uncomfortable. I don’t know what to do. I’m eating low acid diet of course. 

did your GERD go away yet ?

@peaceandlove Sorry you're having so much trouble. For me it still flares occasionally but for the most part it's not really a problem. I am in Month 17 of withdrawal. It's funny you ask right now because 2 days ago the acid stomach started flaring again but I recently started drinking vegetable juice again and that may be the cause so I am going to back down off of that to see if it helps. My bowel function and urinary function still fluctuate but it is much better than this past spring. I am finding that these improvements take a lot of time and that the symptoms fluctuate as described in the windows and waves description. It's not a linear process. All of this seems to tie back into induced Autonomic Nervous System dysfunction which can take a long time to straighten out. Have you tried anything like TUMS, Gaviscon, baking soda and water, etc.?

[peaceandlove]

8 hours ago, FeralCatman said:

@peaceandlove Sorry you're having so much trouble. For me it still flares occasionally but for the most part it's not really a problem. I am in Month 17 of withdrawal. It's funny you ask right now because 2 days ago the acid stomach started flaring again but I recently started drinking vegetable juice again and that may be the cause so I am going to back down off of that to see if it helps. My bowel function and urinary function still fluctuate but it is much better than this past spring. I am finding that these improvements take a lot of time and that the symptoms fluctuate as described in the windows and waves description. It's not a linear process. All of this seems to tie back into induced Autonomic Nervous System dysfunction which can take a long time to straighten out. Have you tried anything like TUMS, Gaviscon, baking soda and water, etc.?

I take something called “Lilly of desert stomach formula” which is supposed to balance stomach acid levels (if that actually is the problem) & I’m also trying to change my diet. I have no idea if its acid problem or just my cns not working. I too also have no control of my bladder sometimes & pain in my pelvic area. When the acid flares, does your stomach have a burning feeling ???

 

But that’s good, I’m glad to hear it’s not a problem for you that much  

 

& I saw you in the sibo part of the forum. So you don’t have sibo ?

[FeralCatman]

1 hour ago, peaceandlove said:

I take something called “Lilly of desert stomach formula” which is supposed to balance stomach acid levels (if that actually is the problem) & I’m also trying to change my diet. I have no idea if its acid problem or just my cns not working. I too also have no control of my bladder sometimes & pain in my pelvic area. When the acid flares, does your stomach have a burning feeling ???

 

But that’s good, I’m glad to hear it’s not a problem for you that much  

 

& I saw you in the sibo part of the forum. So you don’t have sibo ?

@peaceandlove We were unsure at first about the SIBO. The symptoms became inconsistent and as time went by they became less and less so even without testing SIBO was ultimately ruled out. I am getting my GI MAP microbiome test and my DAO level done again in March 2023 to see how things have progressed.

 

Yes to the stomach burning. It doesn't happen very often now but it still flares up mildly every now and again. None of my symptoms now are anywhere near as severe as they were 8 months ago. Things are slowly getting better

 

I cannot say for sure the cause of your issues nor can I really say the exact cause of what I have been through. However, dysautonomia type symptoms are common with adverse reactions and withdrawal. Dysautonomia is a malfunctioning autonomic nervous system. This can be caused by vagus nerve damage, disruption to the HPA axis (Hypothalmic, pituitary, adrenal), or damage to / disruption of other parts of the CNS. Most likely we are all suffering from a combination of damages or disruptions. Vagus nerve massage may help lessen the symptoms. I posted some videos in symptoms and self care that you can try. They helped me many months ago and I still use them.

 

 

The good news is that everyone seems to heal up eventually and are then able to move on. It's just a matter of time.

 

If you haven't seen this already then give it a read. I found it very helpful.

 

Gaviscon was recommended to me by another member and I have found that helpful with the stomach acid.

[peaceandlove]

1 hour ago, FeralCatman said:

@peaceandlove We were unsure at first about the SIBO. The symptoms became inconsistent and as time went by they became less and less so even without testing SIBO was ultimately ruled out. I am getting my GI MAP microbiome test and my DAO level done again in March 2023 to see how things have progressed.

 

Yes to the stomach burning. It doesn't happen very often now but it still flares up mildly every now and again. None of my symptoms now are anywhere near as severe as they were 8 months ago. Things are slowly getting better

 

I cannot say for sure the cause of your issues nor can I really say the exact cause of what I have been through. However, dysautonomia type symptoms are common with adverse reactions and withdrawal. Dysautonomia is a malfunctioning autonomic nervous system. This can be caused by vagus nerve damage, disruption to the HPA axis (Hypothalmic, pituitary, adrenal), or damage to / disruption of other parts of the CNS. Most likely we are all suffering from a combination of damages or disruptions. Vagus nerve massage may help lessen the symptoms. I posted some videos in symptoms and self care that you can try. They helped me many months ago and I still use them.

 

 

The good news is that everyone seems to heal up eventually and are then able to move on. It's just a matter of time.

 

If you haven't seen this already then give it a read. I found it very helpful.

 

Gaviscon was recommended to me by another member and I have found that helpful with the stomach acid.

Thank you so much for the advice & resources. You have been very helpful. I will check out the links. I also think I just need to take time off of here lol as reading all this stuff causes more anxiety.

 

are you fully off your medication yet? How long have you been off. Sorry it’s hard for me to understand your bio info

[peaceandlove]

Also I may try the Gaviscon but I’m scared it says not to take if you have constipation? lol

[FeralCatman]

On 12/9/2022 at 6:27 PM, peaceandlove said:

Thank you so much for the advice & resources. You have been very helpful. I will check out the links. I also think I just need to take time off of here lol as reading all this stuff causes more anxiety.

 

are you fully off your medication yet? How long have you been off. Sorry it’s hard for me to understand your bio info

@peaceandloveI am fully off the Seroquel. I took my last dose on July 31, 2021. I am now in a long hold to let my body and CNS recover. Once I am recovered from the Seroquel I will move on to my other medications and will slowly start reducing them. The consensus seems to be that a long recovery hold between tapering each medication is the best and safest way to go. For psychiatric medications I am still taking 10mg Paxil and 400mg Carbamazepine. I will also have to taper the Metoprolol and the Fexofenadine at some point. I will be doing the Paxil next. I don't know when that will be. I still have a very long way to go.

 

Also, sometimes a temporary break from the forums and from doing research is best since you can end up just feeding the anxiety and making things worse.

[FeralCatman]

On 12/10/2022 at 1:26 AM, peaceandlove said:

Also I may try the Gaviscon but I’m scared it says not to take if you have constipation? lol

@peaceandloveThere are plenty of options out there for GI issues and stomach acid. Keep looking and you will find something that is helpful. There is always the good old fashioned baking soda and water trick that I have used in the past. It's an old remedy but it does work. Just make sure whatever you do that you have researched it all and put whatever you are going to take into drugs.com along with any other meds you are taking and check for interactions.

[FeralCatman]

@peaceandlove I just posted this meditation youtube channel that you may find to be helpful.

 

 

[FeralCatman]

UPDATE

 

Overall things are still going well. Mostly normal or good days. Only 2 mediocre days functionality wise so far this month. A few days with mild anxiety and depression but many with none. Sleep is still not great. I am still waking up multiple times at night to urinate. Sometimes 2 times sometimes 10 so this nocturia seems like it will be slow to go away. My fluid intake does not vary so this is a kidney/nervous system issue. It may be part of the Vagus nerve issues caused by WD. It goes in cycles so sometimes I can get 5 hours of sleep at a stretch and then others only 1-2 hours at a stretch. Also, I have noticed that when I get anxiety I usually have to have a bowel movement shortly after. Once I use the toilet the anxiety goes away. The anxiety at this point is almost never cognitive so my body is still activating fight or flight for normal body functions. I've been able to test out other foods and the serious reactions have not happened. I tried a plain bagel with plain cream cheese and no issues with reactions. Same for crackers and peanut butter. Acorn squash was fine and so was butternut which I previously reacted to. All I have left to test out is mayonnaise and beets which I will do soon. I still have to be cautious with too much exercise so that part of the recovery is slow going but better. The only thing that happened when I ate the extra carbs is that I immediately started gaining weight. Seems like any extra carbs I take in immediately gets stored as fat so my metabolism is not recovered and I will have to stick with a low carb diet or the weight will pack on and I will end up diabetic again if I am not careful. Hopefully when I can finally really crank up my exercise routine again my metabolism will further recover. My primary care doctor thinks that within the next couple of years most of this should improve significantly. Thanks again psychiatry.

 

 

[peaceandlove]

Nice update & thanks so much for all the resources & info 🙂 you’re my new friend lol

[Thorin]

Hi, I read your last post and immediately thought diabetes and blood sugar. But I saw at the bottom you’ve already been on a low carb diet and have had diabetes previously? I’m sure you already know but stopping the low carb diet means your diabetes symptoms can return and cause you to urinate constantly. Were your metabolism issues caused by the seroquel? I’m in the process of tapering off an AP and it effects my blood sugar at times. One doctor actually diagnosed me with diabetes but two others said absolutely not 🤷‍♂️ 
Hope this resolves for you over time!

[FeralCatman]

9 hours ago, Thorin said:

Hi, I read your last post and immediately thought diabetes and blood sugar. But I saw at the bottom you’ve already been on a low carb diet and have had diabetes previously? I’m sure you already know but stopping the low carb diet means your diabetes symptoms can return and cause you to urinate constantly. Were your metabolism issues caused by the seroquel? I’m in the process of tapering off an AP and it effects my blood sugar at times. One doctor actually diagnosed me with diabetes but two others said absolutely not 🤷‍♂️ 
Hope this resolves for you over time!

@ThorinThe metabolism issues were caused by the Seroquel because my blood sugar dropped precipitously after my first Med reduction and then again after I was off it for a few months.  My A1C is now 5.5 and I used to be a medication dependent diabetic. I have no intention of returning to a higher carb diet however I had serious food reactions earlier this year so I am now testing different foods to see how I react which is why I tried the crackers and the bagel. I also have ankylosing spondylitis among other things so sticking with a low carb low Dairy and low histamine diet which is also an anti-inflammatory diet is what I plan to do and I actually enjoy eating like that. However I need to know what options I have now and what I am still reacting to and fortunately it seems like the reactions are gone. I still have to test beets and mayonaise. I also found out the hard way that my exercise tolerance is not fully recovered. We had a lot of snow recently and I just spent two days at about 6 or 7 hours a day shoveling and snow blowing and even though I am not sore muscle wise my nervous system is reacting and I am back in a wave again for the first time in quite a while. I am just resting for now and hopefully this will pass fairly quickly.

[FeralCatman]

10 hours ago, peaceandlove said:

Nice update & thanks so much for all the resources & info 🙂 you’re my new friend lol

@peaceandloveYou're welcome friend 😉✌️😺😺😺

[FeralCatman]

22 minutes ago, FeralCatman said:

@ThorinThe metabolism issues were caused by the Seroquel because my blood sugar dropped precipitously after my first Med reduction and then again after I was off it for a few months.  My A1C is now 5.5 and I used to be a medication dependent diabetic. I have no intention of returning to a higher carb diet however I had serious food reactions earlier this year so I am now testing different foods to see how I react which is why I tried the crackers and the bagel. I also have ankylosing spondylitis among other things so sticking with a low carb low Dairy and low histamine diet which is also an anti-inflammatory diet is what I plan to do and I actually enjoy eating like that. However I need to know what options I have now and what I am still reacting to and fortunately it seems like the reactions are gone. I still have to test beets and mayonaise. I also found out the hard way that my exercise tolerance is not fully recovered. We had a lot of snow recently and I just spent two days at about 6 or 7 hours a day shoveling and snow blowing and even though I am not sore muscle wise my nervous system is reacting and I am back in a wave again for the first time in quite a while. I am just resting for now and hopefully this will pass fairly quickly.

@ThorinI should add to this that since I have been off the Seroquel I have periodically worn a continuous glucose monitor and checked my sugars and my reactions to carbs have slowly improved so other than rice I am not getting huge reactions to carbs anymore however if I gain weight that could change. I had a fasting insulin blood test done and that shows a very mild insulin resistance which I should be able to conquer once I am up and exercising consistently and fully again. The excessive night time urination is a condition called nocturia which is a malfunction in the HPA axis of production of antidiuretic hormone ADH or a malfunction in the ability of the kidneys to interpret the ADH signal or it is a problem with the vagus nerve or possibly a combination of all three. It is also a misalignment of one of the various and multiple body clocks that are part of your overall circadian rhythm and if they are in any way out of sync you're going to get weird reactions.  Antipsychotics taken long-term are extremely disruptive to the Circadian rhythm. It is sporadic and does not happen every day and I think that this is just part of the recovery as my body learns how to function now that I'm off the medication. It's still amazes me how dependent my body was on the Seroquel to function day today and how badly coming off the medication degrades your body's ability to perform normal functions. How in the hell this was supposed to be helpful is completely beyond me.

[Thorin]

11 hours ago, FeralCatman said:

My A1C is now 5.5 and I used to be a medication dependent diabetic

That’s fantastic! You must’ve worked hard on your diet

 

10 hours ago, FeralCatman said:

had a fasting insulin blood test done and that shows a very mild insulin resistance which I should be able to conquer once I am up and exercising consistently and fully again.

Also excellent news and a massive relief I imagine. I know how stressed I was when the doctor diagnosed me with diabetes. Came as quite a shock as I’m only slightly overweight. Then two other doctors said I didn’t have it! 

 

10 hours ago, FeralCatman said:

It is sporadic and does not happen every day and I think that this is just part of the recovery as my body learns how to function now that I'm off the medication.

I can’t wait to have the feeling of being able to rely on my own brain and body off medication. That must feel incredible 

 

10 hours ago, FeralCatman said:

ions. How in the hell this was supposed to be helpful is completely beyond me.

Don’t even get me started on that. The anger about this is still very real and big

[Thorin]

11 hours ago, FeralCatman said:

I also found out the hard way that my exercise tolerance is not fully recovered. We had a lot of snow recently and I just spent two days at about 6 or 7 hours a day shoveling and snow blowing and even though I am not sore muscle wise my nervous system is reacting and I am back in a wave again for the first time in quite a while. I am just resting for now and hopefully this will pass fairly quickly.

That would be a shock to anyone’s system if they’re not used to it. Worse if you’re still in recovery. Hopefully the wave will pass quickly with a bit of rest