FeralCatman: recovering from Seroquel

[FeralCatman]

UPDATE

 

So I have discovered a major source of issues for me which is one of the benefits of living my life as a controlled experiment for the last couple of years. Last spring I was taking whey protein powder to supplement my diet and developed strange electric shock symptoms all over my body so I stopped the protein powder and within 48 Hours it was gone. Also the pain in my joints went way down when I stopped at the protein powder. My primary care doctor and I initially thought it was due to the concentration of glutathione in the protein powder. This year I started consuming plain Greek yogurt and plain kefir with no sugar or additives both were organic and I developed the same problems. Electric shocks and significantly increased joint pain throughout my body as well as brain fog and an increased sensitivity to temperature. I stopped the yogurt and kefir and again within 48 hours the electric shocks went away and just over a week later all of the other symptoms are gone. So it turns out the casein protein in milk is an inflammatory agent for me and the microbes in the yogurt and kefir may also be increasing symptoms of histamine intolerance. So I'm going to have to continue on this restricted diet of low histamine and no Dairy. I also discovered that carbamazepine otherwise known as Tegretol which I am currently taking is a known mast cell destabilizer so I'm sure that is contributing to the problem. It may be the reason why I had such a severe reaction to allergy shots years ago and why my seasonal allergies got so much worse after I started taking it. Paroxetine and Allegra are both known to inhibit the activity of the diamine oxidase enzyme that is used to process histamine from your diet in your gut. NSAID's also cause problems with diamine oxidase so I have to limit those as well. So it looks like my remaining issues with digestion are most likely due to the medications I am currently on and the carbamazepine is certainly the most disruptive and dangerous of the drugs that I take so that will be the next to go. I have already switched from the 200 mg Tegretol XR tablets twice daily to 2 of The 100 mg Tegretol XR tablets twice daily. I have had a lot of stress recently due to one of my cats being very sick but once this situation passes and I can de-stress for a week or two I'm going to start switching half of that dose to immediate release so I can start slowly tapering. Since the histamine intolerance issue is going to be a long-term problem due to medications I'm considering trying a diamine oxidase supplement to assist digestion and processing histamine from my food and hopefully that will calm my guts down even more. When I have more information and I know how this is going I will post another update for everyone. I am remaining on break for now while I I'm doing all of this so I can just focus on that because that is certainly enough to have to focus on.

[FeralCatman]

15 hours ago, peaceandlove said:

Hello how are you doing ?  

haven't talked to you in a long time but I remember us talking about food activating us & causing anxiety. Has that gone away for you? Being sensitive to food 

@peaceandlove I actually just posted something about this and the anxiety after eating has gone away but the problems with food have not and the explanation is within that post and it turns out it's more than likely the medications I am taking right now.

[Catina7]

Thanks for the update @FeralCatman.  I'm so sorry to hear about your kitty; I hope they get better soon.  ❤️

[FeralCatman]

UPDATE

 

I wanted to add to my first post above.

 

During the process of recovering from the Seroquel I developed some pretty severe symptoms including food and diet issues as well as electrolyte issues. This is why I have been holding for over 2 years. Had I continued to taper before figuring all of this out and also gave my body time to recover there is no way I could have figured anything out at all. It would have been a total mess. This is why a hold between tapering multiple drugs or if new symptoms crop up while tapering a drug is so important. It's the only way you stand a chance of figuring things out. This is why my entire life remains a tightly controlled experiment and I only do one thing at a time including exercise. I don't change exercise patterns if I am trying a new dietary item and if I want to work on diet then I hold the exercise in place while I do it. Now, after over 2 years, I have everything nailed down, I know what is what, I know a bit about my new body, I am on a very healthy consistent diet, and my symptoms have calmed way down so now I can feel safe tapering again and feel like I can stand a chance of knowing the difference between what is already going on and anything new that crops up as a result of this next taper. If you are tapering multiple drugs and are not having serious adverse effects this is definitely the way to go in my opinion and certainly the safest. There is no rush. Slower is faster and still gets you to the same place in the end.

[FeralCatman]

UPDATE

 

I have another addition to this recent update that I should have added. I've had a number of stressors recently especially having a sick cat because I've been up at all hours of the night to check on him and get him food and he's also been coming into the bed to curl up on me so I have to lay on my back to let him do it and I can't sleep on my back. Of course I have also been very stressed and worried because his life is at risk right now. So even though I've only gotten about 5 hours of sleep a night for over a week my guts and my entire body and my limbic system are not freaking out because of the stress and reduced to sleep which is a huge huge deal. I can't say it's been a lot of fun but it's more like it used to be before all this ever started and in fact more and more my days are turning into how they were before I got off the drug.  I also had to do some snow removal a number of days ago from our first snow storm and it had no effect at all unlike last year.  I'm going to maintain my plan of limiting my physical activity and not pushing that end of things for a while however I now seem to be able to go out and walk a mile and a half to two miles even in wooded Terrain without any consequences so I'm going to limit myself to that until probably late spring or next summer and then try and push a little bit and see what happens. So all in all very good news and hopefully as long as I don't push the physical stuff I am through the worst and ready to move onward and upwards with getting the rest of this crap out of my system.

[littlebird]

5 hours ago, FeralCatman said:

During the process of recovering from the Seroquel I developed some pretty severe symptoms including food and diet issues as well as electrolyte issues.

Me too, brother! When I drink something with electrolytes, like coconut water, I can feel my body going, "Oh thank god, more please."

 

5 hours ago, FeralCatman said:

Slower is faster and still gets you to the same place in the end.

So real! 

 

1 hour ago, FeralCatman said:

I now seem to be able to go out and walk a mile and a half to two miles even in wooded Terrain without any consequences

Woohoo! This is great news, so glad you're able to get out there.

[FeralCatman]

I just posted this in 'Finding Meaning' about trauma recovery.

 

 

[FeralCatman]

UPDATE

 

I have some good healing news.

 

As I mentioned earlier I've been under a bit of stress due to a very ill cat. We had hoped it was IBD which is treatable so I was giving IV fluids and medications and getting up at all hours to try and get him to eat. It turns out he had intestinal lymphoma. There was nothing more to do and he died at the vet on Wednesday. 😢😿 It's been very stressful and still is as any cat lover out there can imagine.

 

Even with all of this stress my limbic system has so far not reacted excessively. No panic attacks or anything severe. Digestion is still fine. Last night I woke up with mild anxiety around 2 am or so and didn't get much sleep after that so about 6 hours because I go to bed early now. This morning my stomach was a bit acidic which hasn't happened for a long time so I tried the baking soda test again. I've tried it a few times since the initial test this summer and have consistently gotten no reaction. This morning, after just under 3 minutes which is the cutoff time for an acceptable reaction, I actually got a reaction and a small burp. At 6 minutes I was still getting small burps. So, my body is starting to make stomach acid on it's own again which means the entire digestive process is starting to fire up again. Hopefully this means I won't need the Betaine HCL and the enzymes long term because they are not cheap. They are however worth it for what they have done. Given everything that has happened and the fact that I've been under so much stress I would have expected my stomach acid to still be very low but that's not the case so in spite of all of the stress my body is still healing any way. Healing is happening.

[Mittenraised]

6 hours ago, FeralCatman said:

UPDATE

 

I have some good healing news.

 

As I mentioned earlier I've been under a bit of stress due to a very ill cat. We had hoped it was IBD which is treatable so I was giving IV fluids and medications and getting up at all hours to try and get him to eat. It turns out he had intestinal lymphoma. There was nothing more to do and he died at the vet on Wednesday. 😢😿 It's been very stressful and still is as any cat lover out there can imagine.

 

Even with all of this stress my limbic system has so far not reacted excessively. No panic attacks or anything severe. Digestion is still fine. Last night I woke up with mild anxiety around 2 am or so and didn't get much sleep after that so about 6 hours because I go to bed early now. This morning my stomach was a bit acidic which hasn't happened for a long time so I tried the baking soda test again. I've tried it a few times since the initial test this summer and have consistently gotten no reaction. This morning, after just under 3 minutes which is the cutoff time for an acceptable reaction, I actually got a reaction and a small burp. At 6 minutes I was still getting small burps. So, my body is starting to make stomach acid on it's own again which means the entire digestive process is starting to fire up again. Hopefully this means I won't need the Betaine HCL and the enzymes long term because they are not cheap. They are however worth it for what they have done. Given everything that has happened and the fact that I've been under so much stress I would have expected my stomach acid to still be very low but that's not the case so in spite of all of the stress my body is still healing any way. Healing is happening.

I am happy for your continued progress. Positive things are happening and it gives me a boost when things seem to be moving slow. It's human nature to want to rush the process. I keep going back to your advice "slow is fast". Enjoy your improvements and I wish your cat a full recovery!

[FeralCatman]

      

    UPDATE

     

    So it turns out I no longer need the betaine HCL because I am starting to make stomach acid again in sufficient quantities which means my digestive system is firing back up again. Last week I started to get burning in my gut when I ate as well as some burning in my throat and I messaged my nutritionist and she said to stop taking it because I don't need it anymore and she's right so now I'm just taking the digestive enzymes only. So things appear to continue on the path of healing up.

     

    As I have written about in past posts I continue to have a lot of memories and emotions coming back and it's very powerful and at times overwhelming. It has been written about on this website and here is a link to that.

 

    I also had someone send me a link regarding something in benzodiazepine withdrawal called Life review which is basically the same thing and here is a link to that.

 

https://benzowithdrawalhelp.com/for-bwd-bind-sufferers/recovery/life-review-in-benzodiazepine-withdrawal/

 

Benzodiazepines and antipsychotics are both heavy duty sedatives so it makes sense that they would both cause the same thing

 

    It's been causing a lot of really intense crying fits and it's pretty exhausting but it's part of the process so I say Bring It On because it's helping me to vent out over 5 Decades of Trapped emotions which definitely need to come out so some of this is years of locked own trauma and some of it is the withdrawal process itself. I've talked to other people that have been through this part of the process and they all say that it passes and that if you need to cry don't try and hold it in just let it rip and I'm finding that when I'm having a little anxiety creeping up I just find something that triggers a crying spell and the anxiety goes away and I feel much better. I just try and avoid doing it while I'm out in public so I don't end up with a net over my head.

 

This was an unexpected part of this process for me but it's also very welcome because it's allowing me to heal from things that I never healed from so as I said Bring It On I know it will pass and even with all this going on other things are still healing.

 

This also shows that no matter how much therapy I went through while on the meds that therapy could only get so far because of all my emotions were suppressed so you can't really access things that you need to to Really heal until you get off the drugs. Seems to me that these drugs don't actually help anything they actually keep you sick and prevent you from healing. That of course is just my opinion and my experience and it may be different for other people but that seems to be how it is for me.

[2cats2272]

@FeralCatman I just posted about this! I’ve been feeling very undeserving lately and cry so much 

[j1290]

5 hours ago, FeralCatman said:

and I'm finding that when I'm having a little anxiety creeping up I just find something that triggers a crying spell and the anxiety goes away and I feel much better. I just try and avoid doing it while I'm out in public so I don't end up with a net over my head.

I can relate.  Lately I've had some hyperarousal, followed by hypoarousal, than a good cry and I feel a lot better.  I'm with you it can be really tough when these feelings come up in the moment.  If someone is kind to me it can really make me emotional.  

 

I've been doing a lot of somatic work lately and trying different approaches like using a variety of self hugs during flashbacks(helps more than I would have guessed) or a weighted blanket pressed against the chest(somatically it feels like I'm getting a hug from my mom), and bringing resources (includes memories that give you a good feeling) into that moment so it helps take the sting out of it.  EMDR for traumatic events was probably the most effective method of healing for me.   

 

 

 

 

 

 

[FeralCatman]

I made this for myself and my therapist to help understand what it is that I am actually up against as are all people going through protracted withdrawal.

 

 

The Human Body in Post Acute Withdrawal Syndrome (PAWS)   What Generates Symptoms
The Body       (3 Central Control Systems)
The Nervous System       (2 main components – Central and Peripheral)				The Immune System       (Fight Infections, Viruses, Inflammatory Response)	The Endocrine System       (Hormone Production and Balance)
Central Nervous System   (Brain and Spinal Cord)	Peripheral Nervous System       (2 Components – Somatic and Autonomic)
	Somatic Nervous System   (Muscles, Pain)	Autonomic Nervous System   (Breathing, Heartbeat, Organ Functions, Digestion, Fight/Flight, etc.)
		Sympathetic   (Activating – Fight Flight)	Parasympathetic   (Calming – Rest and Digest)
These 3 Control Systems are Inter-dependent. They operate in synchronization with each other. To alter or disrupt one system is to alter or disrupt all 3 systems.
Psychiatric Drugs, Street Drugs, Alcohol, And Other Neuroactive Substances Directly Bind With And Alter Neurotransmitter Receptors In The Nervous System. Not Just In The Brain But Throughout The Body. Steroids, Immune Modulators, Antibiotics Etc. Also Alter All 3 Systems.
Neurotransmitters (Serotonin, Dopamine, Norepinephrine, GABA, etc) Are Used By The Nervous System Not Just For Mood But For Organ Function, Muscle Function, Immune Function, And Endocrine Function. Immune And Endocrine Chemistry Also Bind With And Alter Receptors in the Nervous System.
All 3 Systems Use The Same Shared Chemistry To Communicate Both Internally And Between Systems
What This Means Is That Neuroactive Drugs Alter Every System And Component In The Body. Nothing Is Left Untouched. Over Time The Body Makes Structural Changes To Every System To Compensate For The Presence Of The Neuroactive Drug. The Longer You Take It The More The Entire Body Changes.
Most psychiatric drugs primarily suppress the sympathetic Nervous System. Over time the parasympathetic nervous system becomes weak / damaged. When the drugs are taken away the sympathetic nervous system comes roaring back to life and patient becomes sympathetic dominant (Fight / Flight dominant). Initially the parasympathetic nervous system cannot compensate. This autonomic imbalance is where symptoms come from in PAWS every system in the body.
The real healers are time, good diet, relaxation activities, and low stress. (Average PAWS recovery time is 2-3 years)

 

[getofflex]

On 12/8/2023 at 4:45 AM, FeralCatman said:

As I have written about in past posts I continue to have a lot of memories and emotions coming back and it's very powerful and at times overwhelming. It has been written about on this website and here is a link to that.

 

On 12/8/2023 at 4:45 AM, FeralCatman said:

It's been causing a lot of really intense crying fits and it's pretty exhausting but it's part of the process so I say Bring It On because it's helping me to vent out over 5 Decades of Trapped emotions which definitely need to come out so some of this is years of locked own trauma and some of it is the withdrawal process itself. I've talked to other people that have been through this part of the process and they all say that it passes and that if you need to cry don't try and hold it in just let it rip and I'm finding that when I'm having a little anxiety creeping up I just find something that triggers a crying spell and the anxiety goes away and I feel much better. I just try and avoid doing it while I'm out in public so I don't end up with a net over my head.

 

This was an unexpected part of this process for me but it's also very welcome because it's allowing me to heal from things that I never healed from so as I said Bring It On I know it will pass and even with all this going on other things are still healing.

I can relate to this so much!  I've been going through the very same process myself.  I totally agree, I say bring it on, because I spent a lifetime repressing emotions and trauma, which is what I believe made me depressed and anxious.  It sounds like you are doing some very deep and healing work here!  

[getofflex]

I'm very sorry to hear about your cat dying.  I'm a cat lover myself.  However, I'm glad to hear that your limbic system is not over reacting.  

[littlebird]

On 12/8/2023 at 2:45 AM, FeralCatman said:

 I also had someone send me a link regarding something in benzodiazepine withdrawal called Life review which is basically the same thing and here is a link to that.

 

https://benzowithdrawalhelp.com/for-bwd-bind-sufferers/recovery/life-review-in-benzodiazepine-withdrawal/

 

Benzodiazepines and antipsychotics are both heavy duty sedatives so it makes sense that they would both cause the same thing

Oh my lord, this is exactly what happens with Seroquel and Gabapentin tapering. It's at times unbearable, been walking around with headphones and trying to distract myself.

 

On 12/8/2023 at 2:45 AM, FeralCatman said:

This also shows that no matter how much therapy I went through while on the meds that therapy could only get so far because of all my emotions were suppressed so you can't really access things that you need to to Really heal until you get off the drugs. Seems to me that these drugs don't actually help anything they actually keep you sick and prevent you from healing. That of course is just my opinion and my experience and it may be different for other people but that seems to be how it is for me.

Exactly this. Therapy is so much more effective now!

 

On 12/2/2023 at 5:00 AM, FeralCatman said:

It's been very stressful and still is as any cat lover out there can imagine.

Nothing like this pain. So sorry for your loss. 💔

 

On 12/8/2023 at 8:13 AM, j1290 said:

I've been doing a lot of somatic work lately and trying different approaches like using a variety of self hugs during flashbacks(helps more than I would have guessed)

Oooh, I'm gonna try this. Good looking out, John.

 

Glad to hear some updates on your healing, @FeralCatman! So glad to hear your digestion is healing. I wonder if there's any mind-body connection to digestion and processing emotions?

[FeralCatman]

On 12/9/2023 at 3:33 PM, littlebird said:

Oh my lord, this is exactly what happens with Seroquel and Gabapentin tapering. It's at times unbearable, been walking around with headphones and trying to distract myself.

 

Exactly this. Therapy is so much more effective now!

 

Nothing like this pain. So sorry for your loss. 💔

 

Oooh, I'm gonna try this. Good looking out, John.

 

Glad to hear some updates on your healing, @FeralCatman! So glad to hear your digestion is healing. I wonder if there's any mind-body connection to digestion and processing emotions?

@littlebird  Absolutely there is. Your gut microbiome is a key part of your body's stress response so if you become less stressed your guts will function better and if your guts function better you will become less stressed. This is sometimes difficult to achieve especially if you've got a long history of trauma which tends to keep you at a higher baseline stress level but if you work on healing the trauma the rest of your body should get better as well.

[FeralCatman]

I just posted this under the thread for trauma and thought some may find it helpful.

 

 

[FeralCatman]

UPDATE

 

As these memories and dreams keep happening I am realizing more and more how much unprocessed and long suppressed emotion has been buried deep down inside that has now been set free by coming off the Seroquel. It really sucks. I think this long buried trauma/emotion is probably the main source of any continuing issues I have after stopping the drug and I am beginning to think the withdrawal is a secondary issue that is probably exacerbating the trauma response and chronic maladaptive stress response which is of course still in high gear due to years on the med which suppressed it. The more I read about trauma and chronic stress the more I learn just how sick that can make you both mentally and physically. It really takes a toll on the body. It is even being found to induce autoimmune conditions due to it's adverse effects on the immune system. (See the chart I posted in the post above on this thread)

 

 

This whole idea of trauma / stress related illness makes a lot of sense in the context of my life. Add to that the chemical stress of what was done to me over many years and it's no wonder I got sicker and sicker and am still having issues over 2 years off the Seroquel. It's not just my mind and brain that have taken a severe beating but my entire body.

 

The good news is that neuroscience, psychology, my PCP, my therapist, and others that have had these issues all say that this can and will get better with time, effort, and therapy which is now finally able to do it's job.

[modelarz71]

Excuse me, from your stomach complaints, do you still have early satiety (feeling of overeating) after eating a moderate meal?
Have you tried turmeric for stomach ailments and what do you think of it?
 

[littlebird]

5 hours ago, FeralCatman said:

The more I read about trauma and chronic stress the more I learn just how sick that can make you both mentally and physically. It really takes a toll on the body.

So real!!!!! When I was taking a class on trauma, the list of common stress-related ailments people with cPTSD develop was basically a family medical history. Then I realized trauma runs pretty hard in my family too. Oh snap. It might not be genetics fully (although being predisposed likely plays a role). 

 

5 hours ago, FeralCatman said:

As these memories and dreams keep happening I am realizing more and more how much unprocessed and long suppressed emotion has been buried deep down inside that has now been set free by coming off the Seroquel.

This is a good heads up, thank you, for what life will be like on the other side. I'm thinking of leaving Seroquel to be the last one I take out cause it's prescribed for sleep and that's gotta stay solid if I'm gonna work while tapering, so it might be years till I'm off this. Excuse me while I scream into the void for a second about the years part....... and I'm back.

 

******* trauma, man. It's a beast. Thank god we talk about it these days! No wonder it became intergenerational for so many of us the way our ancestors were forced by society to bury it inside. 

 

I really appreciate you and all the information and resources you share! Hope you're having a day filled with glimmers (the opposite of triggers for my folks new to the trauma recovery, these are things that bring us joy/connection/hope/healing) and some good time with the outdoors and animals.

 

Sounds like you've got quite a natural paradise! My urban-stressed soul is yearning for some time in the woods. If body is feeling up to it I might bundle up and try for a hike this weekend, or maybe just sitting under some trees in the quietest place I can manage.

 

Up to my neck in construction noise, near-constant police helicopters, noisy neighbors, and sirens that are pushing my noise-cancelling headphones to the limit, but maybe some nice nature noise will trick my brain into calming down the threat centers. Manifesting a quiet home to heal in, hopefully in the near future!!

[FeralCatman]

4 hours ago, modelarz71 said:

Excuse me, from your stomach complaints, do you still have early satiety (feeling of overeating) after eating a moderate meal?
Have you tried turmeric for stomach ailments and what do you think of it?
 

@modelarz71 I do not have that issue with eating and most of my digestive issues are gone now that I am taking digestive enzymes. I have never tried tumeric so I can't give any input on that.

[FeralCatman]

UPDATE

 

I've started getting really dry mouth at night and started to suspect that maybe my salt intake is now too high.

 

I went to Quest and got another CMP done and it was 2:00 p.m. when it was taken and the Sodium result was 137 the same as my fasting Sodium value of 137 a few weeks ago. 

 

That fasting value was after peeing out a liter and a half of fluid over night with double the sodium content (120) than it was a few months ago (60).

 

Yesterday's value of 137 was after I consumed 1300 mL of fluid plus food and over half my salt intake for the day of about 1.25 tsp added salt.

 

Since my sodium output in my urine has doubled on a constant sodium and fluid intake and my numbers are constant I'd say this is recovering and I'm going to cut back a bit and see what happens. 

 

From the look of the graph of all of my results this all started with the hit in the head last January so my guess is that this was cerebral salt wasting syndrome from the head injury and it is recovering. It may also explain why I started having such a hard time again last year because the hit in the head interrupted the healing process. 

 

It's either that or a withdrawal/recovery effect that is recovering but either way it doesn't look like it's the meds causing it. 😁😁😁

 

This is also a good example of why making decisions on one event or one lab result is often not a good idea and it's trend analysis that will tell the real story.

[FeralCatman]

18 minutes ago, FeralCatman said:

UPDATE

 

I've started getting really dry mouth at night and started to suspect that maybe my salt intake is now too high.

 

I went to Quest and got another CMP done and it was 2:00 p.m. when it was taken and the Sodium result was 137 the same as my fasting Sodium value of 137 a few weeks ago. 

 

That fasting value was after peeing out a liter and a half of fluid over night with double the sodium content (120) than it was a few months ago (60).

 

Yesterday's value of 137 was after I consumed 1300 mL of fluid plus food and over half my salt intake for the day of about 1.25 tsp added salt.

 

Since my sodium output in my urine has doubled on a constant sodium and fluid intake and my numbers are constant I'd say this is recovering and I'm going to cut back a bit and see what happens. 

 

From the look of the graph of all of my results this all started with the hit in the head last January so my guess is that this was cerebral salt wasting syndrome from the head injury and it is recovering. It may also explain why I started having such a hard time again last year because the hit in the head interrupted the healing process. 

 

It's either that or a withdrawal/recovery effect that is recovering but either way it doesn't look like it's the meds causing it. 😁😁😁

 

This is also a good example of why making decisions on one event or one lab result is often not a good idea and it's trend analysis that will tell the real story.

Cerebral salt wasting syndrome is the result of either some sort of neurological injury such as a hit in the head or a tumor and is considered rare. Here is a link that talks about it.

 

https://en.m.wikipedia.org/wiki/Cerebral_salt-wasting_syndrome

 

Usually this is something that resolves on its own in 2 to 4 weeks but can sometimes last for months or years. If I am correct about this diagnosis then it took several months for it to start to recover but it is definitely recovering.

 

Symptoms include autonomic dysfunction, low sodium, high urine outpu, High urine sodium content, and muscle cramps among many others and I had all of the above listed symptoms. In reading the above link again my guess is that where I not already autonomically imbalanced the hit in the head probably wouldn't have done this to me so most likely it was a combination of withdrawal recovery and the hit in the head that caused this problem.

 

Since the injury causes autonomic dysfunction it also explains why my symptoms started getting worse after I hit my head and that continued through this summer but it's now starting to improve again. So most likely this was a combination of autonomic dysfunction from withdrawal and Recovery and an additional induced dysfunction from the head injury. So all I have to do this winter is make sure I wear my cleats outside when it's icy and perhaps add in a helmet and some bubble wrap 😋

 

[FeralCatman]

I came up with my own therapy technique to help with all these memories and emotions and some of the inner child stuff.

 

 

[FeralCatman]

On 12/16/2023 at 6:25 AM, FeralCatman said:

UPDATE

 

I've started getting really dry mouth at night and started to suspect that maybe my salt intake is now too high.

 

I went to Quest and got another CMP done and it was 2:00 p.m. when it was taken and the Sodium result was 137 the same as my fasting Sodium value of 137 a few weeks ago. 

 

That fasting value was after peeing out a liter and a half of fluid over night with double the sodium content (120) than it was a few months ago (60).

 

Yesterday's value of 137 was after I consumed 1300 mL of fluid plus food and over half my salt intake for the day of about 1.25 tsp added salt.

 

Since my sodium output in my urine has doubled on a constant sodium and fluid intake and my numbers are constant I'd say this is recovering and I'm going to cut back a bit and see what happens. 

 

From the look of the graph of all of my results this all started with the hit in the head last January so my guess is that this was cerebral salt wasting syndrome from the head injury and it is recovering. It may also explain why I started having such a hard time again last year because the hit in the head interrupted the healing process. 

 

It's either that or a withdrawal/recovery effect that is recovering but either way it doesn't look like it's the meds causing it. 😁😁😁

 

This is also a good example of why making decisions on one event or one lab result is often not a good idea and it's trend analysis that will tell the real story.

UPDATE

 

So I cut back 500 mg of sodium daily and that resulted in a borderline low sodium of 134 which isn't a big deal but it's definitely not recovered. However my minimum salt intake requirement has gone down a bit which is good. So, unfortunately I haven't really been able to narrow this down I'm still dealing with three choices of medication side effects, or withdrawal recovery effect, or brain damage from a hit in the head but there will be no way to know until the doses come down so on to the next experiment. Isn't science fun 🙄

[FeralCatman]

UPDATE

 

So I finally found the nuts and bolts answer to the nighttime urination issues and probably the salt as well. The answer was posted by AltoStrata over a decade ago when she had the same issue and the information was obtained from her PCP.

 

Stress hormones like Cortisol interfere with a hormone called Vasopressin or Anti-diuretic Hormone (ADH) which is partially used to control water absorption/excretion in the kidneys. When the body is stressed the body can't maintain the proper fluid balance due to the stress hormones interfering with ADH and there can be a tendency to urinate a lot at night. This correlates with what I experience and when my body is stressed the urine volume goes up. The good news for me is that on average my nighttime urine volume is half of what it was in the beginning so it is slowly getting better which means my body is slowly becoming less stressed.

 

Additionally, it has been observed that when stressed, the kidneys have a tendency to excrete more sodium for reasons no one really understands.

 

The problem got worse after my head injury and whiplash because the body/brain suddenly had to deal with that stress as well so it exacerbated an existing problem.

 

So, during withdrawal, the body is massively stressed and those stress hormones are causing the urination issue and very likely the sodium issue as well due to an induced impairment in the body's ability to properly maintain the fluid/electrolyte balance.

 

Solution - TIME

[FeralCatman]

UPDATE

 

So first the not so good news. The stress from having a sick cat and being up all hours taking care of him and his subsequent death set off another wave. It's been 4 weeks as of tomorrow since he died and the last time this happened it took about 6 weeks to recover. So, still having symptoms consisting of anxiety, muscle twitching, headaches, and my sleep has degraded a bit to 6-7 hours most nights instead of 7-8 hours and some nights I am only getting 4 hours. Also, on the nights where the anxiety / stress levels are up I have to pee more. Usually it's 1.5 L and on bad nights it goes up to 2. It used to be 3 or more every night. This I think is how my body is trying to get rid of stress hormones in addition to what I posted previously about stress and urination and ADH hormone. The anxiety tends to be worse at night and my circadian rhythm shifted again so now I am going to bed at 8 pm and have been waking up at 2 am and some nights I get another hour after that. This all seems to be a residual stress response. My digestion amazingly is still fine as is my gut motility so the enzymes are definitely still helping things along.

 

Now the good news. I have had some good days while this has been going on. Those days are so good that it is hard to remember feeling bad because I feel like myself again on those days. Definitely the best yet as disappointing as this wave is. Today I had a 20 minute conversation with my neighbor and a woman from one of the animal shelters I applied to also called and we had a nice talk for about 20 minutes and despite having only 4 hours of sleep last night and bad anxiety from 1 am to 6 am, I was fine with the conversations. Not only was I not stressed or annoyed but I actually enjoyed talking to them. Other than my dad and my therapist that's the first time since before this all started that I was able to enjoy a conversation with someone. Even just 3 months ago that would not have happened. I am getting to the point that I may be able to handle limited volunteer work but I am holding off until the spring to see how things go. These bouts of symptoms are much shorter now. They seem to last about 24- 48 hours, sometimes less, and then I get the same number of days where I feel like myself as if none of this ever even happened. So the pattern is different and so far no full blown adrenaline surges. So, I am hoping that this may be the last gasps of this madness and at the very least it's significant progress because it's been well over 2 years since socialization has been at all tolerable to me let alone enjoyable.

 

So, despite having some days that still really suck, healing is happening 😁

[FeralCatman]

UPDATE

 

Even though I am still having some issues with sleep and all these memory dumps and emotions that keep hitting me I got a bit of really good news today that I thought I would share for the year end.

 

For years while on the Seroquel I was a medication dependent diabetic and took metformin twice a day. When I first got off the medication my blood sugars actually got worse for a short time so after a meal my blood sugars would spike to upwards of 250 and sometimes higher. Those slowly came down over the first year until my A1c became pre-diabetic and then borderline diabetic and then it became normal over the first year and a half. I am very strict with my diet and basically eat the same foods every day and so last spring I wore a continuous glucose monitor again for a while and after meals my blood sugars would only Spike to 170 versus the 250+ when this first started. I decided to start wearing a monitor again to see if any of these anxiety and cortisol episodes are due to blood sugars after meals. Now after a meal eating the same foods I've been eating through most of this process my blood sugar only hit 145 and that meal included not a small amount of white rice. So I've gone from a 130 Point Spike down to a 25 point spike eating the same Foods. Even though when I'm not sleeping well and stressed like last night and today and have a high fasting glucose due to the cortisol I am no longer getting big spikes after eating and I could probably eat a box of cookies and not get a huge Spike now so my insulin resistance is pretty well gone. It also explains to me why I'm still having issues because that is a whole lot of cellular restructuring that is going on in my body over the last two and a half years to see a huge Improvement like that so no wonder I'm tired and my body is stressed and if my pancreas has been busy rebuilding and restructuring itself then that's why I'm not producing enough pancreatic enzymes for digestion because it's just busy doing other things right now trying to fix all the damage done by the Seroquel.

 

These numbers are one of the few objective gauges I have to show that healing is definitely happening even though at the moment I feel like crap because yesterday I had another big memory dump again and I got flooded with emotions and was crying all afternoon and didn't sleep well last night so I'm glad I took these readings today because it gives me a lot of Hope that at some point this will come to an end but it also tells me my body has suffered a massive amount of damage and you just can't expect it to fix that in a couple of months. Healing is definitely happening and I am still on two other medications so you can definitely heal while you're still taking other meds. 😁✌️🐱🐱

[FeralCatman]

UPDATE

 

I'd like to add one more thing to the above post and that is also I realized this morning that while I was on the Seroquel I couldn't remember very much from earlier in my life. All of these memory dumps that I've been getting really suck there's no doubt about it because they come with all kinds of crazy emotions that are really overwhelming however this morning I realized there's a huge upside to it. This morning talking to my dad he brought up something from when I was a child and was able to remember my neighbor's name and what she looked like as well as her father's name. For many years that was totally out of my reach and even a year ago if you would ask me I couldn't have recalled that but now I can and it's getting easier. So the sequence of events in my healing seems to be the first year to year and a half was more changes in physical symptoms from all the side effects that I had repairing themselves and now the last 12 months it seems to have transitioned into more memory and emotion. Whatever the case may be as I said healing is definitely happening 😁✌️🐱🐱

[Mittenraised]

On 12/31/2023 at 12:52 PM, FeralCatman said:

UPDATE

 

I'd like to add one more thing to the above post and that is also I realized this morning that while I was on the Seroquel I couldn't remember very much from earlier in my life. All of these memory dumps that I've been getting really suck there's no doubt about it because they come with all kinds of crazy emotions that are really overwhelming however this morning I realized there's a huge upside to it. This morning talking to my dad he brought up something from when I was a child and was able to remember my neighbor's name and what she looked like as well as her father's name. For many years that was totally out of my reach and even a year ago if you would ask me I couldn't have recalled that but now I can and it's getting easier. So the sequence of events in my healing seems to be the first year to year and a half was more changes in physical symptoms from all the side effects that I had repairing themselves and now the last 12 months it seems to have transitioned into more memory and emotion. Whatever the case may be as I said healing is definitely happening 😁✌️🐱🐱

I like to hear this. I have suffered with memory since I started using this stuff. Cognitive ability has certainly taken a hit. It's amazing how the body can heal itself, but sometimes it takes more time than we would like. 

 

 

[StayHopeful]

On 12/31/2023 at 10:52 AM, FeralCatman said:

while I was on the Seroquel I couldn't remember very much from earlier in my life. All of these memory dumps that I've been getting really suck there's no doubt about it because they come with all kinds of crazy emotions that are really overwhelming

Great that you mentioned this, and a good way to describe it.

Seroquel, made me forget, bury and greatly minimize, anything that would cause an emotional reaction (good or bad). It really feels strange, remembering events and actually feeling the emotions that you should have had at the time (overwhelming for sure). It's very encouraging for me to be able to deal with and start processing the life experiences that Seroquel wouldn't allow me to; as a healthy unmedicated person would. 😊

 

[Mittenraised]

32 minutes ago, StayHopeful said:

Great that you mentioned this, and a good way to describe it.

Seroquel, made me forget, bury and greatly minimize, anything that would cause an emotional reaction (good or bad). It really feels strange, remembering events and actually feeling the emotions that you should have had at the time (overwhelming for sure). It's very encouraging for me to be able to deal with and start processing the life experiences that Seroquel wouldn't allow me to; as a healthy unmedicated person would. 😊

 

@StayHopeful, what was your final dose when you jumped off the Seroquel? I am currently tapering it. I have suffered from the memory issues as well as a myriad of other unpleasant things this poison causes. I really look forward to being free from it, but for now I just concentrate on today.

[StayHopeful]

I jumped off at approximately 3mg. I was also on the XR version. I finished my taper 3 months before finding this site and as you can see by my signature, I tapered waaaaay too fast (800mg in 8 months). After going through what I have, I wish I'd known to taper more slowly. Take your time, there's no hurry.😊

[FeralCatman]

On 1/7/2024 at 1:53 PM, Mittenraised said:

@StayHopeful, what was your final dose when you jumped off the Seroquel? I am currently tapering it. I have suffered from the memory issues as well as a myriad of other unpleasant things this poison causes. I really look forward to being free from it, but for now I just concentrate on today.

@Mittenraised6.25 mg. Looking back I should have continued tapering very slowly and gotten down to less than 1 mg.

[FeralCatman]

UPDATE

 

ON 01/07/2024 I started swapping over from Tegretol XR to Carbamazepine IR. I am noticing absolutely no difference between the 2. Here is the procedure I am using to do the swap.

 

I have recovered from the illness and subsequent death of my Kitty Mac Duff. I am sleeping 7+ hours a night. Early on one bad night was enough to mess me up for weeks. Now it takes 2 weeks of stress and disrupted sleep to trigger a wave which is not as intense as early on. My urine volume at night is down to about 1 liter. So, that continues to slowly get better. I have figured out that when the volume goes up there has been some sort of physical or mental stress on my body and the extra urination at night is my body flushing out stress hormones. It's very consistent with stress levels. I had to clear very heavy snow a week ago and it only cost me about 14 hours of worse symptoms and then went back to normal. We've had 2 other storms plus one last night that were much drier lighter snow and those haven't affected me in any way. So, I am still sensitive to upper body exertion but not as much as a year ago. What seems to get me is wrestling with the snow blower on slippery ground with heavy snow where I really have to lean into it to get the job done. Shoveling does not seem to get me as badly. Twice now I have made the very long drive to therapy in person in a snow storm and I was fine. My first year off Seroquel my gastroparesis would kick in and I would be throwing up rotten food for 2 days and been horribly sick. That is certainly not happening. The drive is almost 100 miles one way. Huge improvement. I am still eating fine and taking the digestive supplements and am back to eating small amounts of things like pistachios. So, though not there yet, I continue to make small improvements over time and am on a very good trajectory. Certainly well enough to swap the meds over and start a slow taper again. I'll update again after I do a couple of reductions and have a chance to see how that affects me.

 

Healing is happening 😉✌️😺😺😺