FeralCatman: recovering from Seroquel

[morgana]

hey @FeralCatmani had extreme pain in my feet and especially up the sides of my legs, felt like i needed a massage everyday but they did very little, magnesium did very little also...this went on for 2 years in pain and only when i started a healthy keto diet and started drinking electrolytes with potassium and salt that the pain went away....Dr Eric Berg talks about pain and cramps in your legs on his youtube channel...listen you might find it useful....at first it started off as the pain when you first get up in the morning in your feet and slowly goes away but in the end it didnt go away and the pain and feeling of stiffness and cramping all the way up to my knees ended up being constant...it was due to a lack of certain nutrients in my body..it has helped me alot...but yeah only started happening while tapering...also my liver is stuffed....and have problems with pancreatitis so my body probably wasnt absorbing the nutrients it needs...also if your on your treadmill maybe you need some electrolytes...just a thought cheers morgana

[FeralCatman]

@morgana I will check out the video. I start every day with an electrolyte drink I make from apple juice, cranberry juice, lemon juice, psyllium fiber, salt, and a potassium supplement. All organic with no additives. I am also on a largely Keto Diet that is also low histamine / low inflammatory and is nothing but whole foods some of which I grow myself. No grains or gluten, no dairy, mostly veggies and fruit. My food list is posted in an earlier post. My peripheral pain levels have gone way down. I went to an orthopedic doc on Monday and got a workup done. Turns out this is a lower lumbar strain that is causing a nerve pinch and will be going to PT. I also have mild to moderate stenosis in my lower lumbar and will be going to a spine clinic for evaluation and imaging since people with Ankylosing Spondylitis tend to have troubles in that area and it needs to get a baseline and be monitored. It is already starting to resolve on its own but what I have realized is with all of the weight loss my body mechanics have changed and things are a bit out of kilter. My PT helped me the last time with a bunch of stuff and I am sure she can help me straighten all of this out.

[FeralCatman]

UPDATE

 

I had a meeting with my PCP today. I discussed my plans and thoughts for moving forward. He had hoped that I would be able to get off everything much quicker but he also agreed it is a reasonable course of action considering everything that has happened over the last 14 months since I jumped off of the Seroquel. He also agreed that my recent GI illness was actually a flare of drug / drug WD induced Gastroparisis. Here is a link which talks about what that is. It's probably pretty common for those in withdrawal experiencing GI distress.

 

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

 

I also shared some information with him about Paxil that he was previously unaware of. He said I should consider medical school as I know more about withdrawal and psychiatric medications than most of the doctors he knows. I took it as a complement but I also find that a bit funny since I only have an associates degree. I also find it funny because compared to the administrators, moderators, and many members on this site I am a freshman year student in a class full of Phd's. It's pretty bad when someone with 2 years of college has a better understanding of a subject than people who went to 8 years of college plus an internship, residency, and possible fellowship have of the subject. Especially those who chose to specialize in psychiatry. Doesn't say much for the state of our medical education system. 🤔

[FeralCatman]

I just created a document for my PNP and my PCP and my other doctors so they can see what they are really doing when the prescribe a drug like seroquel. It is titled 'Secondary and Tertiary Side Effects of Seroquel'. It lists the major side effects of Seroquel that I experienced which are now gone except for the Hypothyroidism which now seems to be permanent. It then goes on to list the side effects both mental and physical of each of those. It then lists each medication I was on to control those conditions and then lists the mental and physical side effects of each of those medications. When you look at a drug in this format it is pretty easy to see why it is a bad idea. I am hoping she will use this in one of her classes so her students can see what they have the potential to do if they are not really vigilant. The document is attached if you want to view it. It's a real eye opener even to me.

 

 

Secondary and Tertiary Side Effects of Seroquel.docx

[FeralCatman]

UPDATE

 

Here are the statistics for Sept 2021 my 14th month off of the Seroquel

 

12 Mediocre Days      40%

 9 Good Days             30 %

 7 Normal Days          23%

 2 Bad Days                  7 %

 

Days at good or above 53 %

 

The 2 bad days were due to illness from my Allegra reduction induced episode of Gastroparesis. Yuck. Had I not done the reduction there would most likely have been no bad days so it skews things a bit. I have also injured my back and am still recovering which has skewed the statistics a bit. The percentage of Normal days this past month is the highest it's been so far. So, some small progress has been made.

 

Here are the statistics for August 2022 for comparison

 

13 Mediocre Days     42 %

12 Good Days            39%

6  Normal Days          19 %

0  Bad Days                  0 %

 

Days at good or above 58 %

 

From this point forward I am not going to post statistics until there is a significant change. I am now entering my 15th month since Jumping off the Seroquel. The same sorts of symptoms seem to keep rotating through. Each time they are slightly different and not as severe as the last rotation. It seems like my body is making small system wide corrections then lets me rest for a bit then decides things are still not right and it goes through the process again. The most difficult symptoms I have now are the flares of anxiety in the morning that come and go and the fatigue which comes and goes. My diet is slowly getting more diverse but it is a slow process. I have added onions back in again with no issues this time. I am going to try out my morning decaf coffee soon as it is the only thing I really miss and want to have back in my morning routine. I have a bunch of doctors appointments, lab work, nutrition appointment, etc. coming up so will be interesting to see how things look when I get the results back.

[Heath]

Sounds good @Fer787878 !

 

I also have the morning nervous heeby jeebies. Since July. I’m getting used to it. It’s morning cortisol. I’ve about figured out the pattern.
From Monday to Friday -

Monday nervous anxiety starts when I open my eyes and goes away around 1 pm with doubtful ruminating lingering until afternoon hike. And by Friday the nervousness is gone. And then starts over again Monday morning. Like the movie Groundhog Day. 
So what’s happening is Friday night till Sunday morning is staying up late and sleeping late. Bad habit of mine. 
There is a lot of info about cortisol and solutions on here and the web. 
I’ve been researching the sunrise clocks with light and nature sounds, they either cheap or expensive. 
Good luck with the drs appointments!

[FeralCatman]

@Heath Thank you. With everything I am doing and having taken a flame thrower to all of my bad habits it's hard not to get frustrated with progress that has slowed down to a crawl. For several years before starting the taper I spent a lot of time building up my strength and endurance, improving my diet, getting to know my limits and when I could push and when I needed to hold back, learning tolerances to cold and heat, finding things that helped improve symptoms, dealing with fears, building confidence, etc. Now it's like I strapped on a whole new body that I don't know at all and I am having to learn everything over from scratch and have no idea what to expect. Sound familiar everyone? 🙄 Due to what happened earlier this year I've developed an unhealthy fear of my own body that is hard to shake when my body keeps throwing curve balls at me that make no sense. Right now when I urinate my teeth hurt. 😧 Huh???? Previously when I had to urinate my skin would burn. 😧Huh???? Before that it was the adrenaline surges. Even though I had a short period where driving was fine the driving fatigue seems to be back but not as severe. None of this is at all easy to understand as there is not much logic to it. I discussed this stuff with my acupuncturist today who is pretty good at figuring things out and even he had no idea what to say. The good news is that these symptoms pass and each time I cycle through them it seems to get a little better so there is an identifiable trend in a positive direction. Given all of the major changes that happened earlier this year I had hoped that the remaining progress needed would be just as quick but it's not turning out that way so the body function anxiety is very hard to kick right now until I get an extended break. So, what can I do? Keep the healthy habits and push forward and give it time. I try to remember that a drug like Seroquel pretty much shuts down your nervous system and given how long I was on it and the dosages I was on it's going to take awhile to undo all of the changes that were made. It's why I am not doing any more tapering until things really stabilize. Finding patience I guess is the hardest part of all of this.

 

Take care and thanks again for checking in on me.

[FeralCatman]

@Heath I thought about what you said about patterns and I figured out a pattern of my own. It has to do with the cycles of symptoms I am having. This morning is very cold and I just went outside to sit for a bit and had an epiphany.

 

While tapering there were of course some corrections being made but the real repairs couldn't happen until I was completely off the medication.

 

During the first 4-5 months I became extremely sensitive to carbs no matter what I did. I developed fatigue and a sensitivity to cold temps among other things. I also tried to do multiple things to counter the symptoms which in hindsight added to the physical stress and made things worse. Trying to reduce the Allegra and changing the histamine signaling in my PNS just added to the chaos. Last winter I couldn't go outside on many days no matter how well dressed due to the cold sensitivity which is very unusual for me. All signs of a system very out of balance and it seemed like my body was fighting against lowering the sugar levels and making the corrections even after off the drug. I had expected them to just correct themselves. No big deal right?

 

In January I started to get really sick. Fatigue was bad. The cold sensitivity got worse. The food sensitivities kicked in. My diet became restricted. I ended up having a severe episode of gastroparesis which necessitated cutting my diet back to bare bones. The adrenaline surges started. I couldn't pee right or poop right. Sleep went down to almost nothing. I became very weak. My BP went all over the place and did weird things. I was a mess. In the end when I finally called my dad for help I was breathing out of a bottle of welding oxygen to try and keep myself going. This is also when my endocrine system did it's major corrections and my blood sugars dropped and I lost a lot of weight in a short time. There are multiple factors at play including nervous and endocrine system corrections working together.

 

By April things started to calm down and move back towards my old normal and I thought 'thank god that's over.'

 

However, using the clarity of hindsight, I have since gone through 2 more clearly identifiable cycles of the same symptoms and pattern. Just less severe and of shorter duration. It is evident in that just a few weeks ago I went through the gastroparesis again. However it was short lived and I recovered quickly. So did my diet. After that came the fatigue and a day or two of blurry vision and the cold sensitivity as well as other symptoms such as my teeth hurting when I pee which used to be skin burning when I pee and before that there were the adrenaline surges when I had to pee. So it's kind of the same but different.

 

What seems to be happening is that corrections happen in cycles of decreasing severity over time. The first big cycle came when my body made the decision to correct my endocrine system and I got really sick. Once that was done I got a short break and the next cycle of corrections started. GI upset seems to be the first thing that happens. It seems like the body goes through all of the systems and makes progressive corrections to every system, waits a bit, detects things aren't quite right yet and so starts again. Each cycle becomes less severe and it seems like as time goes by it becomes more about fine tuning systems rather than major corrections and so is less painful.

 

I realized all of this while sitting on my deck this morning in a T-shirt and it is 35 F outside right now and like it always has been prior to this year I was just fine. A couple of weeks ago I had to wear a heavy coat outside for a couple of days if it was in the high 50's and I was getting cold in the house at 72 F. Big change but same pattern as before.

 

So in summary, my recovery seems to be happening in similar cycles of decreasing severity and as time goes by it seems to be more about fine tuning things and less about major corrections. Now that I recognize this the anxiety will be less when I start the next cycle because I now know than pattern and can expect a quicker recovery if the trend holds.

 

The other thing that I have to remember is that Ankylosing Spondylitis causes mood and anxiety symptoms during flare ups. Part of this back injury is a flare up. So it will be a bit difficult to sort out what is recovery and what is the AS but now that I know the cycle and pattern it will be easier to differentiate.

 

 

 

[tsranga]

22 hours ago, FeralCatman said:

So in summary, my recovery seems to be happening in similar cycles of decreasing severity and as time goes by it seems to be more about fine tuning things and less about major corrections. Now that I recognize this the anxiety will be less when I start the next cycle because I now know than pattern and can expect a quicker recovery if the trend holds.

 

Having had almost 4 years of experience with these patterns in WD, I would be very conservative in your expectations of healing. I can tell you that the anxiety and fear doesn't go away, and I still have some symptoms that have the same intensity and recovery time, especially when they return.  What changes is your ability to cope with the symptoms and recovery time from the anxiety/fear. 

 

The last two months for me have been quite tough - international travel across 13 time zones in August, and unstable weather in September (heat wave in the 110s, followed by a cold front, and then alternating pattern of daily dips and spikes of more than 10-15 deg).  

 

I am basically down to sleeping on alternate nights due to nightly GI flares, and frankly, other than attributing it to a more sensitive nervous system due to the increased stress following COVID in July, I have no other explanation why this is happening.

 

There is no doubt in my mind now that I am dealing with autonomic dysfunction, and there is involvement of both the HPA axis as well as the gut-brain axis (vagus nerve).  Fundamentaly, it appears to be an issue a dysregulation in the HPA axis due to chronic maladaptive response to physiological stress (primary heat/cold/pressure). The areas most affected are the blood vessels and the smooth muscle fibres in the GI tract, respiratory tract (sinus/nose) and extremities (hands and legs).

 

It appears to me that there is a delay/maladaptive response to temperature changes - the skin senses the cold, but the hypothalamus isn't sending the right response to address it (eg. shivering to warm the body, similarly, I feel the heat, but the sweating is delayed).  Secondly, adapting to changes in pressure (especially gastric pressure/distension due to postural changes, food, evacuation etc.) seem to be critical for the body to adapt quicker to temperature changes.  The key organs in this orchestration are the skin, blood vessels, smooth muscle, neurons of the ENS, ANS and CNS (specifically the unmylinated C fibres), and the key neurortransmitters playing a role in this are norepinephrine, adrenaline, cortisol, and acetylcholine, as there appears to be a circadian rhythm to the symptoms, and it seems to happen more at rest (parasympathetic dominant which managed by the vagus nerve). As a result, the ability of the body to regulate and precise control blood pressure through the opening and closing of sphincters, and temperature through vasodilation and vasoconstriction, and peristalisis through the contraction and relaxation of the smooth muscles is impaired.  It doesn't seem to be a vascular issue, although I may still need to investigate the delay in response on my left side compared to the right side. 

 

Since we are on a very similar symptomatic pattern, I thought this may be useful information. 

 

Here are some write-ups/hypothesis on the BP/vasodilation/vasoconstriction, and neuropathy  - 

https://www.dinet.org/forums/topic/18604-blood-pressure-variations-as-a-possible-theory-for-dysautonomia/#comment-169760

 

https://www.dinet.org/forums/topic/23039-my-theory-on-what-is-causing-most-dysautonomia-and-why-there-are-wide-ranging-symptoms-autonomic-neuropathy/

 

https://www.dinet.org/info/newsletters/lefty-loosey-righty-tighty-the-autonomic-nervous-system-blood-vessels-and-pots-r230/

 

I still have not found a solid explanation for the role that the GI tract/abdomen plays in homoestatis, but how that connects to my legs and sinuses, but I have found links between IBS, peripheral neuropathy and vasomotor rhinitis, all of which taken as a whole, point to autonomic dysfunction. 

 

The question at this point is how much of this is being triggered in the subconcious state (limbic system) due to the repeated / never-ending physiological stress, and if that needs a reset.  I found two interesting pieces on stess and resetting the nervous system with the use of low dose naltrexone - 

 

https://www.statpearls.com/ArticleLibrary/viewarticle/41471

https://www.vitality101.com/health-a-z/are-you-sensitive-to-everything

 

 

 

 

 

 

[FeralCatman]

@tsranga I am very sorry you are having such a hard time. It sounds like traveling may have set things off. I know it would for me which is why traveling is not in my future unless I can drive there and sleep in my car. Also, COVID 19 seems to set off autonomic dysfunction in people who get long COVID. They seem to develop many of the same symptoms that those of us in WD do. The doctor I talked to at the ER who had a friend with dysautonomia said that in her case it was viral induced dysautonomia. I would think COVID could do the same thing and perhaps that is part of what you are now dealing with. You also had IBS prior to ever being medicated and the combination of COVID and traveling stress may be part of what is exacerbating your symptoms. Of course I can't really say for sure but I would think it is a possibility. Additionally, the healing timeline is different for everyone and is unpredictable even for 2 people on the same medication at the same dose so there is no way to know what future healing will look like. What I posted is just a pattern I noticed. People do heal up. Some take a few months. Some take a few years. Some have taken over a decade. All you can do is just keep taking the next step. Thank you for the links and I will definitely check them all out and add them to my knowledge base. As always the more you learn the better off you are.

 

One thing I do know for sure is that when I joined the military and volunteered for the Submarine Service you get tested inside and out forwards and backwards. They run you through the wringer. Only the healthiest of the healthy are selected due to the nature of the job. Prior to being medicated I had no health issues. I was able to make it through the toughest academic program in the military and qualify as a nuclear power plant operator and submariner. Somewhere in that time my mood and anxiety symptoms started and now almost 3 decades and a long list of medications later there is no hope for me to go back through it all and sort it all out. I have some theories some of which I have posted but I have realized too much has happened and too much time has gone by to ever really figure out what went wrong in the first place. There are just to many potential causal factors involved to ever sort it out. There are also many things that have happened in my life that can be adding to the problems of mood and anxiety that I have not posted since this is not a therapy forum and it would be inappropriate and also triggering for many people. The damage has been done on too many levels and I accept that.

 

What seems to hamper most people in their recovery from the medications is that they also have to juggle multiple stressors while trying to recover. Things like jobs, family, school, relationships, desire for a social life, etc. The big difference between me and most people going through this is that I am retired. I don't have a job, or school, or family to contend with. I live alone and have complete control of my schedule and surroundings and stress levels. I don't have close friends nearby, don't have visitors, don't go out other than for running errands and medical appointments (or to find a place to disappear into the woods for the day), and other than this web site and some text messages I don't have much contact with anyone so the only stressors I deal with are myself, my cats, and what I choose to deal with on a daily basis. I don't get lonely so I don't have to deal with that and loneliness seems to be a huge problem for most people that adds to the problems of recovery. So, that level of control gives me an advantage on what stress levels I have to deal with. As far as my guts go, up until a year ago, I pretty much had an iron stomach so the gut issues are new and only occurred after I stopped the medication. Prior to stopping the Seroquel I could drink a bottle of hot sauce and it just wouldn't matter. I've always been able to eat pretty much anything and it didn't matter. This leads me to believe that ultimately my body or at least my guts will balance out again as there are already multiple signs that this is happening. Diet is something that I will always be careful with going forward. As far as the rest of it goes I haven't slept well since the military and don't expect to. I had anxiety and depression before I was ever medicated and I expect that it will continue on some level for the rest of my life. I accept that. What I can now say for sure is that my anxiety and depression is improving off the medication vs. when I was on it since I am having larger blocks of time depression and anxiety free now that I am off the Seroquel vs. when I was on it. There is a definite trend. I do absolutely agree with you that most of this is about coping skills. All I am hoping for is a return of daily physical functioning where I can return more consistently to daily exercise, hiking, skiing, fishing, and taking care of my cats and my property unassisted. My independence and autonomy are the most important things to me above all else. I also have Ankylosing Spondylitis, Forestiers Disease, Hypothyroidism, Hypogammaglobulanemia, PTSD, and an IGA deficiency, etc. to contend with so I realize that I have to keep my expectations reasonable and that it is going to be very difficult if not impossible to completely sort all of this out and separate one thing from another. All I can do is increase my knowledge base to allow me to find ways to cope. Going back to eating only twice a day has really helped despite that it goes against traditional advice. It works for me. That is what all of this is about, finding what works for each one of us and that will look different for everyone. My goal is to just get back to the same baseline functioning that I had a year ago and that will be good enough for me. That will not include drinking bottles of hot sauce though. I like eating the way I do now and will be sticking with it.

 

Please take care and keep sending information. I will do the same as I come across things I find interesting or useful.

 

Kitty prayers 😉✌️😺😺😺😺

[FeralCatman]

A much shorter way to say all of what I just said would be that we all need to be very cautious not to make the same mistake that modern medicine and science makes. They take data from very small groups of people and then try to extrapolate that out to the population at large and they make generalizations that just don't apply evenly across the population. Individual biology and physiology varies from one person to the next in such a way that making generalizations is almost always a mistake. All you can do is take all the information then look at your own life and see how it applies to yourself. It will never look the same from one person to the next.

[FeralCatman]

UPDATE

 

Yesterday was a mile marker for me in my recovery. A few months ago just driving the 15 minutes or so up to the transfer station to empty my trash was an adventure and caused debilitating fatigue. Yesterday I had to do an in person appointment with my Rheumatologist to get my imaging studies done for my Ankylosing Spondylitis / Forestiers Disease and for my back injury. It is 160 miles one way so 320 miles round trip. The night before I did not sleep very well and one of my cats is very sick with kidney issues so I did the trip while sleep deprived and very stressed about my cat and nervous about the trip. I did mostly okay until I was half way home and then the stress got to me and my gut issues flared up. That of course made me angry which then added to the stress. I was pretty sick and throwing up when I got home. Last night I was thinking 'Great, here we go again'. However, after sleeping alright last night, I am just fine this morning and will be able to eat a normal breakfast and probably have a normal day. I will have to make sure to stay low stress and get plenty of rest for a few days before I venture out again but this is a major improvement and a major milestone for me.

 

So, even though the trip really pushed me to the edge of my current limits it is very clear that my limits have expanded immensely since just a few months ago. A few months ago there would have been no hope for me to have made that trip. It also tells me that stress is the major trigger for my gut issues and that my stress tolerances  have increased significantly in the last few months and my recovery times are getting shorter. This is one of the best signs of healing that I have had yet. I am also in the midst of the longest back to back string of functionally good / normal days I have had since stopping the Seroquel and the first 5 days of this month were functionally normal with no anxiety and no depression. I had 12 days in a row like that until yesterday which was rated mediocre due to the stress induced anxiety/depression and gut issues. So, the best days yet. So, healing is definitely happening and I will continue to resist the urge to sprint for the finish line and continue to slowly plod along with my plans. Slow and steady wins the race.

 

October is my 15th month of of Seroquel.

[ChessieCat]

I've moved your new topic to an existing topic:

 

eating-food-as-an-activating-factor-increasing-anxiety-or-symptoms

 

[FeralCatman]

I just posted the following about my digestive issues and what seems to be working for me and thought it would be good to re-post it here as well.

 

 

[FeralCatman]

I just posted a follow up to my post in 'Eating Food As An Activating Factor....". Here is a link to that post.

 

 

[FeralCatman]

On 9/30/2022 at 5:50 PM, FeralCatman said:

With everything I am doing and having taken a flame thrower to all of my bad habits it's hard not to get frustrated with progress that has slowed down to a crawl.

 UPDATE

 

So, I may have spoken too soon about progress having slowed down to a crawl. Here are the statistics for the days since September 24th which is 36 days. September 24th seems to be the beginning of a significant turning point as far as functionality is concerned.

 

0 Bad Days                  0%

9 Mediocre Days       22%

13 Good Days            36%

15 Normal Days         42%

 

28 Days at good or above 78%

__________________________________________________________________________

Here are the statistics for Sept 2021 my 14th month off of the Seroquel

 

12 Mediocre Days      40%

 9 Good Days             30 %

 7 Normal Days          23%

 2 Bad Days                  7 %

 

16 Days at good or above 53 %

__________________________________________________________________________

Here are the statistics for August 2022 for comparison

 

13 Mediocre Days     42 %

12 Good Days            39%

6  Normal Days          19 %

0  Bad Days                  0 %

 

18 Days at good or above 58%

_________________________________________________________________________

 

You can clearly see a significant increase in my functionality over the last 36 days. About 20% improved. During these days I experienced a significant back injury involving sciatic pain down both of my legs, a long drive, multiple appointments and physical therapy, a very sick cat who required IV fluids at home and multiple vet trips and who ultimately passed away. He had been sick for a long time and his kidneys finally gave out. 😪😿😿😿 For me there is nothing more stressful than when one of my cats is suffering.

 

Even with all of this stress there has been a significant improvement so my stress tolerances are improving. I am still experimenting with diet but I have been able to add decaffeinated coffee with skim milk back into my mornings including the flavored decaff that I love so much so that is awesome. Yesterday I had 4 cups of it over the day and there are not issues so I am becoming less reactive to foods over time. Still not there yet but major improvements are still happening. I still deal with bouts of extreme fatigue and bad anxiety and issues with eating and my guts which I am working on figuring out how to best manage that. I am mostly recovered already from the back injury and am back to walking at least a mile and a half once a day and sometimes twice along with getting back to most of my stretching routine. I have a few more stretches to add back in and then it will be on to wearing a weight vest on my walks to prep for being able to carry my backpack again and go for a hike. Tomorrow will start my 16th month off of Seroquel. I think I can safely increase my total recovery from 75% to 80%. 😀😺😺😺

 

[FeralCatman]

UPDATE

 

Here are some additional statistics for the last 36 days.

 

18 Days with No Depression                   50%

10 Days with No Anxiety                         28%

10 Days with No Depression or Anxiety 28%

 

17 Days with sleep quality at fair or better 47%

 

So there is an improvement with my depression and sleep quality as well as functionality compared to previous time periods. 😁

 

I also had all of my routine blood work done again. Most of it looks great. My thyroid is dialed in at the new lower dosage. My A1C is still 5.5% so the diabetes is definitely gone and now that I am able to exercise again I will drive that number down further. My nutritionist also had my PCP order a fasting insulin test and the results were much better than she had expected given my history. My CBC looks good and all values have normalized. My CMP looks good as well. Unfortunately my lipid panel is now out of spec having gone off of the crestor. Here are the values: (any comments from knowledgeable members and moderators are welcome)

 

Total Cholesterol                                 213 High

Triglycerides                                          96

HDL                                                        56

LDL                                                       138 High

Non HDL Cholesterol Calculation       157 High

 

I will not take a statin again so I am looking at other options and I am pretty sure it is the Paxil I still take that is doing this as it is definitely not due to diet. I found out from my nutritionist that there is additional more detailed testing that can be done to find out if the numbers the lipid panel gave are actually bad so I am looking into that tomorrow with my PCP. There are apparently different kinds of LDL that go into that number and some are good and some are bad. If it is the good part of LDL that is high then no worries. There are also supplements that can be used in place of statins since my numbers aren't that bad. My immunology results unfortunately are not at all improved but are at least stable. I also now have a significantly elevated IgE level which is new. There are multiple things which can cause this so I am looking into that as well. I was kind of bummed to see that but it may just be an indication of autoimmune disease which I already have diagnosis for and have for a long time.

[PortugueseSea]

Normal is below good? Somehow I have come to think that normal means excellent, better than good. 

It is great to hear you are slowly getting better. I am 8 months off an anti-emetic (read anti-psychotic) and still struggling. My recovery is happening at a snail's pace so it's very good to read something positive. 

I rate my days from 0 to 10 but maybe I should subcategorize them using a qualitative scale like yours.

Are you looking to eventually reduce your paxil and or carbamazepine? I am on 15mg mirtazapine and it seems to have helped but I am afraid I might be hindering my recovery by staying on it?

I have read some of your updates and you sound very positive and inspiring. I hope you keep making progress!

[FeralCatman]

9 hours ago, PortugueseSea said:

Normal is below good? Somehow I have come to think that normal means excellent, better than good. 

It is great to hear you are slowly getting better. I am 8 months off an anti-emetic (read anti-psychotic) and still struggling. My recovery is happening at a snail's pace so it's very good to read something positive. 

I rate my days from 0 to 10 but maybe I should subcategorize them using a qualitative scale like yours.

Are you looking to eventually reduce your paxil and or carbamazepine? I am on 15mg mirtazapine and it seems to have helped but I am afraid I might be hindering my recovery by staying on it?

I have read some of your updates and you sound very positive and inspiring. I hope you keep making progress!

@PortugueseSea Thank you for the good wishes and the same goes back to you. 😉 The ratings were not in any particular order so sorry for the confusion. Here is another way to view them which may make more sense

 

Bad day = Non Functional

Mediocre Day = Functional for half the day

Good Day = Functional for most of the day

Normal Day = Functional for the entire day

 

So, normal is best.

 

I have said this before but it is worth saying again. I have been through many difficult experiences in life. This process of getting off of and then recovering from Seroquel is by far the most difficult and most frightening  thing I have ever had to do. There is no mental preparation you can do, there is no training for it, it is unpredictable and confusing, there is very little professional help available, and worst of all there is no break from it once you are in PAWS. It's pretty brutal. At 8 months it was hard to see myself getting to this point but here I am. Earlier this year when I finally called my Dad for help I was sick enough that when he got here he thought I was going to die. Scared him to death. Hard to believe that something that was supposed to help you can be this brutal to try and get away from. It's really criminal to give this stuff to anyone IMHO.

 

Eventually I will start tapering the Paxil and then the Carbamazepine but I am holding for now until I am fully back up and running again so it may be awhile. Not ready to do this to myself again just yet.

 

I am glad you find my thread to be positive and inspiring. Believe me when I tell you that there have been many days that I was not all that positive and inspiring to be around or listen to. I had many days especially this spring when I didn't think I could do any more and wanted to quit and prayed for death to be honest with you. Fortunately stubbornness is one of my qualities and I have never been a quitter and here I am going into 16 months and seeing significant recovery.

 

Seems like everyone eventually gets to this point so hang in there, you will too. It will be tough but it will also be worth it. One thing I can say is that going through this has been quite an education and I have learned many things that will help me to live better for the rest of my life so it's not all bad.

 

Take care and best wishes.

 

 

[FeralCatman]

Had a great day today. Finished prepping my vehicles for the winter this morning, put a new carburetor in my leaf blower, and then decided to go for a drive through the mountains. During my drive I realized that you never really appreciate simple things like just getting in your truck and going for an afternoon drive until that ability and freedom gets taken away from you. A few months ago I struggled to make the 10 minute trip to the transfer station to get rid of my trash. It was so nice to be able to have a full day of both getting work done and then something for enjoyment and have no issues. The first 6 days of this month have been 5 Normal Days and 1 good day. Really starting to feel so much better. 15+ months and counting.

[ChessieCat]

On 11/1/2022 at 9:44 AM, FeralCatman said:

One thing I can say is that going through this has been quite an education and I have learned many things that will help me to live better for the rest of my life so it's not all bad.

 

Me too!

[snowdog]

I think your LDL at 138  is ok. Just recieved mine and it is 123. There is a table on the report saying if you have a low risk cardio profile you can have up to 130 of LDL cholesterol. I will check with my cardiologist next week, but I remember by the end of 2021 my LDL was at 113 and my GP said it was OK, specially because my HDL was very high. It is well know that quetiapine and other antipsychotics raise cholesterol levels. My "good" cholesterol now is 111.

 

Covid-19 can change cholesterol levels too. My wifes LDL went up to almost 200 after covid-19. Now, six months later, it is around 130. One doctor wanted to put her on medication, but she said no and went to a nutrologist, that changed her diet and told about covid-19 and cholesterol issues. No medications. Exercises are useful to low cholesterol levels too.

 

I hope to start my quetiapine taper next year and see more changes. By now I will invest in olive leaf capsules and exercices. I'm not sure about diet, because I usually eat health. Maybe reduce some cheese and chocolate (although I usually eat only dark).

[snowdog]

I forgot to say. Some people say Eggplant capsules can reduce LDL cholesterol.

[FeralCatman]

17 hours ago, snowdog said:

I think your LDL at 138  is ok. Just recieved mine and it is 123. There is a table on the report saying if you have a low risk cardio profile you can have up to 130 of LDL cholesterol. I will check with my cardiologist next week, but I remember by the end of 2021 my LDL was at 113 and my GP said it was OK, specially because my HDL was very high. It is well know that quetiapine and other antipsychotics raise cholesterol levels. My "good" cholesterol now is 111.

 

Covid-19 can change cholesterol levels too. My wifes LDL went up to almost 200 after covid-19. Now, six months later, it is around 130. One doctor wanted to put her on medication, but she said no and went to a nutrologist, that changed her diet and told about covid-19 and cholesterol issues. No medications. Exercises are useful to low cholesterol levels too.

 

I hope to start my quetiapine taper next year and see more changes. By now I will invest in olive leaf capsules and exercices. I'm not sure about diet, because I usually eat health. Maybe reduce some cheese and chocolate (although I usually eat only dark).

Thank you for the input. My primary care doctor doesn't see any need for medications and I wouldn't take them any way at this point. I've had enough and my numbers are only borderline. One thing I have been reading about is that recent research is starting to show that cholesterol may not actually be the problem and it may be high triglycerides that are the problem. There is a lot of controversy about cholesterol and the research is constantly changing the picture so it will be interesting to see where things end up. I will look into the eggplant capsules

 

For Seroquel recovery I have found a low histamine diet to be very helpful. Also, dark chocolate has a good bit of caffiene and cheese, especially aged hard cheeses, are high in histamine and have been shown to worsen anxiety. This doesn't happen to everyone but be aware as they may be something you would have to cut out of your diet for awhile.

 

Good luck and best wishes with your future tapering. 😀✌️😺😺😺

[FeralCatman]

There is a thread for the GUPTA program. I posted in that thread and will post updates there about my experiences with that program on that thread.

 

 There is also a thread on neuroplasticity that I think is helpful.

 

 

[FeralCatman]

I have a question for the moderators as well as anyone that has any experience with Tegretol. I am currently on carbamazepine which is generic Tegretol and it is the XR version. I want to switch over to the immediate release formula at the same dosage of 200 mg twice a day for a total of 400 mg per day. I want to do this before I do any further reductions to make sure my body is used to the different formulation before I change anything. It is also easier to reduce should the need ever arise to reduce the dose or eliminate the med altogether. I would think it would just be a direct swap but I wanted to see what people with more experience think about it. Also carbamazepine and the other seizure medications are known to cause immune deficiencies which I think may be the case with me. I of course won't know until I'm off of it but I'm pretty sure it may be the problem.

[FeralCatman]

@manymoretodays Forgot that if I have a question for the moderators I actually need to tag someone. So, tag.....your it. The question is above and can be answered by anyone who has an answer.

[ChessieCat]

On 11/18/2022 at 1:25 AM, FeralCatman said:

I am currently on carbamazepine which is generic Tegretol and it is the XR version. I want to switch over to the immediate release formula at the same dosage of 200 mg twice a day for a total of 400 mg per day. I want to do this before I do any further reductions to make sure my body is used to the different formulation before I change anything.

 

Staying on the same dose during a cross over is a good idea.

 

Q:  What dose tablets are you using (XR) and what dose are the IR?

 

Q:  Are you currently taking the full 400mg once a day?

 

If it was me I would be trying to do a cross over of some sort because it will probably be more gentle on your nervous system.

 

Just some ideas:

 

If you are currently taking 400mg once a day but in 2 tablets, you could move 1 tablet 1 hour each day until you are taking 2 doses 12 hours apart.  Keep an eye on how it affects your sleep.

 

You could then swap one XR tablet for an IR for a while and then swap the other dose.

 

If the XR tablet has a score more that means you can cut the tablet so you could do half and half.

 

cross-over-changing-form-eg-tablet-to-liquid-of-drug-or-changing-brand-of-same-drug

 

After changing to 2 doses per day of IR, you will need to be alert for interdose withdrawal - symptoms get worse before taking a dose but gradually improve as the dose kicks in.  If this happens as a pattern before both doses, then you might need to take 3 doses a day.

 

[FeralCatman]

Thank you for getting back to me this is very helpful.

 

I currently take 200mg of the xr in the a.m and 200mg of the xr in the p.m.

 

The tablets do not have a score mark so they cannot be cut.

 

The IR tablets are also 200mg so I would be switching to 200mg IR in the a.m and 200mg I R in the p.m.

 

I am not ready to make changes yet so I am doing this for future planning so I know what to do when I am ready. As of a couple of days ago I am having a relapse of symptoms so I don't think my body is ready yet.

 

The only other question I have is that I wonder if this long hold is helpful or is it better to continue trying to get off the meds sooner rather than later. I feel like the hold is a good idea for now since I have still not fully leveled out from the Seroquel but I wanted to see what other people's thoughts were. I sometimes wonder if my nervous system will level out while still on the other meds but to me it seems like it should find some sort of new equilibrium.

[ChessieCat]

If the XR tablets are available in a small dose (50mg would be the better option if they are available, if not then 100mg), then you could get a prescription for those so that you could do a gentler cross over. 

 

What you would do is change one dose at a time, alternate evening and morning.

 

Listen to your symptoms and during the process hold for longer at any time during the process if you notice any unwanted changes to your symptoms.

 

Something I have just thought about (after typing the below steps) is that if you can get 100mg and 50mg XR and 100mg and 50mg IR, you could continue to take the XR (total amount 150mg) and 50mg IR ( this is the portion that you would then later make into liquid and then change to 100mg XR + the balance in IR)

 

I hope this all makes some sort of sense, because I'm not going to retype it.  It should give you some ideas to play around with.  Find out what dose of each type of tablet is available (XR and IR) work out a plan and do it gradually.

 

Do each step for about 3 days (ie do not change AM and PM at the same time):

 

evening - 3 x 50mg XR + 50mg IR

 

morning - 3 x 50mg XR + 50mg IR

 

evening - 2 x 50mg XR + 100mg IR

 

morning - 2 x 50mg XR + 100mg IR

 

evening - 1 x 50m XR + 150mg IR

 

morning - 1 x 50m XR + 150mg IR

 

evening - 200mg IR

 

morning - 200mg IR

 

If it was me I would hold for at least 1 week, possibly 2 before changing 1/4 of the dose (ie 50mg) to liquid.  Do not make a reduction at the same time.

 

You would only need to change 1/4 of the dose to liquid for evening and morning because you would take the rest in tablet form (until you get below 150mg).  I would do this first for the evening for a few days and then morning.

 

If you can, get 100mg and 50mg IR tablets if they are available which .

[ChessieCat]

12 hours ago, FeralCatman said:

The only other question I have is that I wonder if this long hold is helpful or is it better to continue trying to get off the meds sooner rather than later. I feel like the hold is a good idea for now since I have still not fully leveled out from the Seroquel but I wanted to see what other people's thoughts were. I sometimes wonder if my nervous system will level out while still on the other meds but to me it seems like it should find some sort of new equilibrium.

 

Generally it is better to hold for longer.

[FeralCatman]

13 hours ago, ChessieCat said:

If the XR tablets are available in a small dose (50mg would be the better option if they are available, if not then 100mg), then you could get a prescription for those so that you could do a gentler cross over. 

 

What you would do is change one dose at a time, alternate evening and morning.

 

Listen to your symptoms and during the process hold for longer at any time during the process if you notice any unwanted changes to your symptoms.

 

Something I have just thought about (after typing the below steps) is that if you can get 100mg and 50mg XR and 100mg and 50mg IR, you could continue to take the XR (total amount 150mg) and 50mg IR ( this is the portion that you would then later make into liquid and then change to 100mg XR + the balance in IR)

 

I hope this all makes some sort of sense, because I'm not going to retype it.  It should give you some ideas to play around with.  Find out what dose of each type of tablet is available (XR and IR) work out a plan and do it gradually.

 

Do each step for about 3 days (ie do not change AM and PM at the same time):

 

evening - 3 x 50mg XR + 50mg IR

 

morning - 3 x 50mg XR + 50mg IR

 

evening - 2 x 50mg XR + 100mg IR

 

morning - 2 x 50mg XR + 100mg IR

 

evening - 1 x 50m XR + 150mg IR

 

morning - 1 x 50m XR + 150mg IR

 

evening - 200mg IR

 

morning - 200mg IR

 

If it was me I would hold for at least 1 week, possibly 2 before changing 1/4 of the dose (ie 50mg) to liquid.  Do not make a reduction at the same time.

 

You would only need to change 1/4 of the dose to liquid for evening and morning because you would take the rest in tablet form (until you get below 150mg).  I would do this first for the evening for a few days and then morning.

 

If you can, get 100mg and 50mg IR tablets if they are available which .

Awesome, this is exactly what I was looking for so thank you very much. The only thing I plan to do different is to not use a liquid. I plan to grind the pills into a powder and weigh out the dose and make capsules to do reductions until I get down to a very low dose and will then start using liquid if needed. I have a jewlers scale and a few thousand empty gel caps and the tools to load them with. I already do it for my magnesium and for my cats medications when needed. I find it much easier to load a pill tray than to deal with liquids. I will probably make the switch to the Carbamazapine IR in the spring.

 

Again, thanks so much. Always feels better to have a good plan from someone who has experience doing this. So glad I found this web site. 😉✌️😸😸😸

[FeralCatman]

13 hours ago, ChessieCat said:

 

Generally it is better to hold for longer.

That's what I thought. Thanks so much. I will continue as planned. 😉✌️😸😸😸

[FeralCatman]

UPDATE

 

Since I started tapering the Seroquel its been 4 years 7 months and 20 days. Since I jumped off the Seroquel and really started my recovery its been 1 year 3 months and 20 days. Some interesting things have started happening recently.

 

Memories long forgotten have been randomly popping into  my head more and more often. Memories of my past, bits of calculus and other subjects I studied, other bits of knowledge, people I had long forgotten that I only knew briefly, etc, etc. No triggers they just pop up suddenly. It's like parts of my brain had been shut down and they are now lighting up again. Don't get me wrong, I am still having many days where my head is full of mud but this is definitely a welcome development.

 

I have been working on letting go of anger over things that were done in places I went to get help. I went to one of those places today to start confronting the anxiety and fear through exposure therapy. On the way home I was exhausted and did something I don't normally do. I turned on the radio. They were playing Christmas music. My reaction totally caught me by surprise. I smiled for the first time in a long time. I felt happy like I haven't been in many many years. I had forgotten what that felt like. I am back home now and listening to Christmas music and singing to my cats (not while writing of course) and feel relaxed and happy. There have been glimmers of this here and there over the last couple of months but this seems to be sticking around this time. Also, I have been having a lot of neck pain but what seems to be happening is that those muscles have been very tense for a long time and they are now unwrapping themselves and relaxing.

 

I am starting to feel like my life going forward is going to be very different from what I had gotten used to and in a good way.

 

It's making me realize just how much this medication took away from me and how much it changed me for the worse. More evidence that I have definitely done the right thing by getting off the Seroquel. 😁✌️😸😸😸

 

 

[FeralCatman]

UPDATE

 

I had RAST blood test allergy testing done for environmental and food allergies which can be done even on an antihistamine. Environmental allergies pretty much matched my previous skin testing so no surprises there. However, my food testing previously showed no allergies. Now I am allergic to Corn, Soy, and Wheat. This explains why I got so sick after eating home made pancakes earlier this year. Pretty much the entire American Diet will make me sick if I go out to eat or eat anything out of a box. The more you look the more you find that these 3 ingredients are in just about everything that is at all processed in any way. The IgE levels were not high enough to worry about anaphylaxis so they are more like sensitivities and are different from histamine intolerance. I was told to minimize or avoid these as much as possible so the whole food diet is serving me well. The cause of my recent gut upset is now clear. I have been using 'Stevia In The Raw'. It contains Maltodextrin which is a starch manufactured from corn or wheat starch so I switched brands to an online brand that is pure Stevia in combination with the extract I make myself. I also experimented with some organic sweet potato chips which listed multiple oils and that did not do my guts any favors. So, I am consulting my nutritionist to find the best brands for this issue and get her recommendations.

 

I cannot say for sure but this may be medication induced. Carbamazepine (Tegretol) as well as all other drugs in it's class like Lamictal are known to cause bone marrow suppression and results in low IgA, IgM, and IgG levels which are your primary immunoglobulins for fighting off viruses, pneumonia, and other infections. There is plenty of literature out there that supports this. The reason for this is not understood. So, it is possible that allergies could be induced or worsened by these medications. Again, this is only a hypothesis. No one really knows. However, much of your immune system is generated in your bone marrow and if it is suppressed then who knows what the actual results would be. I would be interested to know if anyone had food allergy testing after getting off a med as well as before getting off a med and if allergies emerged after stopping the medication or if food allergies only started after getting on a medication.

 

Since Seroquel pretty much locks down the nervous system and is an antihistamine it was probably suppressing the symptoms of the food allergies since I did not have trouble with these foods while on the Seroquel. Again, this is a hypothesis based on my own experiences but there is no hard proof. The only way I will really know is after I am off of everything. So, in the mean time I will have to stick with a strict whole food diet.

 

Also, there is another reason why the order of operations should be antidepressant first and then the anticonvulsant aside from the anticonvulsant being a calming agent which can help with coming off the antidepressant. Antidepressants, Benzos, and Anti-psychotics are known to lower your seizure threshold which of course makes it more likely to have a seizure. Coming off an anitconvulsant too quickly can induce seizures that won't stop and there are warnings from the manufacturers about this which is why going cold turkey off a drug like Tegretol or Lamictal is a bad idea because you can end up with seizures. If you are taking a drug which lowers your seizure threshold like Paxil can then you would be more likely to have issues coming down off of the Tegretol. So, the Paxil has to go first for safety sake. For me this means it will be years before I will know whether or not my immune system will recover and if the food allergies are naturally occurring or induced.

 

Thanks again Psychiatry.

 

What a bunch of boneheads. 🤬

[Heath]

@FeralCatman

Im right there with you on the allergies.

corn and wheat and 3 seasons. 

 

 I cannot answer you questions. I’m not done with these drugs yet. But I have had allergy tests before ssris and after ssris . Not much difference there some but not much. My dr told me the results change over time. Age, health environment etc. 

 

the tests I took showed corn and wheat very minimal one time and nothing on the next test. 
 

I believe we have talked about this before these drugs can affect allergies. I seem to be more sensitive to allergies now.
 

I must warn you to be very careful if you do the allergy immunization therapy. about 6 months after changing to  lexapro I was having more sinus/allergy symptoms and did the test and started the sublingual drops. One day in hot July after a sublingual dose I almost passed out weak etc. haven’t touched it since. I wished I could.
 It may not bother you and it never bothered me before even on Paxil . I can’t explain it.