FeralCatman: recovering from Seroquel

[FeralCatman]

UPDATE

 

The Maudsley Deprescribing manual written by David Taylor and Mark Horowitz is now available to order on amazon and through other vendors. I purchased 3 copies. One for myself, one for my PCP, and one for my psych provider at the VA. Doing this is the best way to try and protect myself from future harm and may save others this hardship as well. If you have the money I would encourage you to do the same. The more copies of this book that get into the hands of providers the better everyone will be. I also pulled up the list of VA mental health providers in my state and as I have the money each will get a copy as well. I would encourage others who have the resources to do this as well. Again, the more copies of these books that get into the hands of providers the better off everyone will be.

 

https://www.amazon.co.uk/Maudsley-Guidelines-prescribing-Prescribing/dp/111982298X

 

[Mittenraised]

12 hours ago, FeralCatman said:

UPDATE

 

The Maudsley Deprescribing manual written by David Taylor and Mark Horowitz is now available to order on amazon and through other vendors. I purchased 3 copies. One for myself, one for my PCP, and one for my psych provider at the VA. Doing this is the best way to try and protect myself from future harm and may save others this hardship as well. If you have the money I would encourage you to do the same. The more copies of this book that get into the hands of providers the better everyone will be. I also pulled up the list of VA mental health providers in my state and as I have the money each will get a copy as well. I would encourage others who have the resources to do this as well. Again, the more copies of these books that get into the hands of providers the better off everyone will be.

 

https://www.amazon.co.uk/Maudsley-Guidelines-prescribing-Prescribing/dp/111982298X

 

I just started reading it tonight. Great idea to distribute it to prescribers of these horrible meds.

[FeralCatman]

UPDATE

 

So it's been a week since I did a 5% reduction with my Tegretol. Overall it hasn't been too bad yet but I've had 2 bad nights not consecutively and my digestion is now way off again so this is what I have figured out.

 

Part of this was the beginning of a pre-existing wave due to a re-emergence of the memory dumps I was having and the associated stress.

 

The second part is that my guts are off again. Tegretol the medication I am reducing is a known serotonin releasing agent. Serotonin is implicated in controlling mood in the brain but most of it is actually manufactured and used in the digestive tract. It is essential for gut function.  Tegretol is a known serotonin releasing agent in addition to a sodium channel blocker and some speculate it may be a calcium channel blocker see the pharmacology section in this link.

 

https://en.m.wikipedia.org/wiki/Carbamazepine

 

By reducing the medication even a small amount it has reduced the amount of Serotonin being released and has therefore affected gut function. Your digestive tract is a key part of your stress response so now that my digestive tract is stressed again from the reduction my tolerance for stress is going down which is partly why I'm having these reactions and bad nights. The solution is to stick with the very basic simple diet  that I've been using and allow time for my digestive tract to adapt to the lower serotonin levels before I make a drop again. How long that will take varies widely from person to person and there is no way to know what sorts of physical adaptations my digestive tract made by the altered serotonin levels from the drug so now it is just holding at the dose I'm at and waiting for however long it takes and I have no idea how long that will be and can't predict. Even though this drug was put on the market in 1962 it is still not well understood how it works and some suspect it is also a calcium channel blocker but it's never really been properly looked into so it can alter the entire neurotransmitter balance as well but again nobody really knows so as with everyone on SA I get to find out the hard way again. So the limiting factor to how fast I can do this is going to be the hypersensitivity in my digestive tract that I've been dealing with which through the gut brain axis lowers my tolerance for stress and was caused by withdrawal from the previous drug and is probably being caused by the drugs that I'm on so I'm just going to have to take it easy and when my guts recover do it again.

 

The third thing that may be affecting me is that my fluid balance changed drastically within 24 hours of the reduction. Previously my night time urination on a good night was about a 1.25 L and on a bad night was over 2 L but now on a good night it's 0.5 L and on a bad night it's 1.25 L and my urine is more concentrated like it should be so my fluid electrolyte balance has also changed. I talk to my primary care doctor tomorrow and will probably do some more blood work and see where my sodium is at and my other electrolytes and it's entirely possible I may not need fluid restriction and extra salt just from just that small reduction but I don't really know yet I will update once I know.

[FeralCatman]

UPDATE

 

I am on day 10 since I did a 5% cut to my Tegretol (Carbamazepine).

 

So far I've had only 2 really bad nights on day 3 and day 9. Other than that it hasn't been too bad so far but my sleep is fluctuating and I am having a bit of increased anxiety so I am going to hold where I am until I am sleeping consistent amounts every night again and then do another 5% cut and see what happens. Once I can see a pattern I'll know my rate of tolerable reduction. This is definitely not as bad as the Seroquel overall. When I did the Seroquel, within 24 hours of the cut I was a mess and I was a mess for 17 days each time before I could make a cut again. That is not happening consistently this time and it is no where near as severe.

 

I did start having indications of an impending wave a few days prior to the cut so this may also be a wave. I talked to Chris Paige the withdrawal coach today and he said there really is no sure way to tell which is causing the symptoms so to just hold and execute the plan of attack I laid out above. So, that's what I am going to do.

 

I have an appointment with Dr. Horowitz in 2 weeks to discuss what I need to be thinking about when it is time to stop this medication and at what dose to do so. I will post what I find out after the meeting.

 

One thing that has happened since the cut is my urine output has gone down drastically. Prior to the cut my nightly output was 1.25L on a good night up to 2L+ on a bad night when my body was stressed. Now, on a good night it is 0.5L on a good night and 1.25L on a bad night. This has been consistent every night since 24 hr after the cut. I have made no other changes than the 5% cut to the Tegretol. I talked to my PCP today and he said to keep going as is for now until I get a few cuts under my belt and monitor my urine output and watch for symptoms of high or low sodium. When I get down in dose, probably to 300mg, is when we will test and I'll have to stop the fluid restriction and extra sodium for about a week prior to testing so the test will be valid.

 

So, onward and upward and I will post updates as things move along.

[Mittenraised]

7 hours ago, FeralCatman said:

have an appointment with Dr. Horowitz in 2 weeks to discuss what I need to be thinking about when it is time to stop this medication and at what dose to do so. I will post what I find out after the meeting.

How does one go about getting an appt. with Dr. Horowitz? Interested.. thnks.

[FeralCatman]

@Mittenraised Contact him via his website and he will get back to you with a link with his schedule. Obviously he is very busy but he will get back to you it just may take a little bit so just be patient. He cannot prescribe in the United States because he is not licensed here however he can work as a consultant with your prescribing provider if you so desire and if your provider is willing.

 

https://markhorowitz.org/

 

[Mittenraised]

On 2/28/2024 at 4:49 AM, FeralCatman said:

@Mittenraised Contact him via his website and he will get back to you with a link with his schedule. Obviously he is very busy but he will get back to you it just may take a little bit so just be patient. He cannot prescribe in the United States because he is not licensed here however he can work as a consultant with your prescribing provider if you so desire and if your provider is willing.

 

https://markhorowitz.org/

 

@FeralCatman Thank you!

[tsranga]

I keep coming back to the weather..  the last week has been crazy.. not just temperature swings but humidity as well.  My sleep and thermoregulation is off and I have more variations in BP and HR.

 

https://www.wunderground.com/history/monthly/us/ca/san-jose/KSJC/date/2024-2

[FeralCatman]

@tsranga  I'm very sorry to hear that you're struggling again. For some people changes in weather and season can be very tough and that does seem to be what happens with you. Wish I had some answers for you and a solution but it's a very complex problem that unfortunately I do not have an answer to. Seems like often times it's more about learning to cope then being able to find the root cause and fix it. For my own problems I have found that once I Let Go and just let it happen and know that it's going to pass it all became easier to deal with and even when I'm having an episode of suffering now I still feel peaceful underneath it.

[FeralCatman]

UPDATE

 

I heard back from my primary care doctor and my psychiatric provider and they both received their copy of Dr Horowitz's book "The Maudsley Deprescribing Guidelines". They both said thank you and both said they were going to start reading it right away. I let them know there was going to be a quiz at our next meeting. 😁 I just purchased four more copies to start sending out to Providers at the VA and wanted to buy more but Amazon will only let me buy four at a time so I have to wait until this order clears and then I'm going to do it again until they all have a copy. There are 11 psychiatrists at the VA in my state so that's five down and six to go. 😁✌️😻😻😻

[FeralCatman]

UPDATE

 

I am on day 13 since I did a 5% drop to my Tegretol and I am in my second day of being completely peaceful and relaxed and feeling very content so I am back to Zen again even though my sleep is still a little Disturbed but my sleep was Disturbed before I was ever medicated so that's nothing new it's just a little more intense now. Since I did the drop I did have an increase in anxiety but not severe or disabling and I started having some GI trouble again which is now clearing up and my urine volume changed and went down which was surprising but welcome and I had to really bad nights of anxiety where I was up most of the night. I am going to stay at this dose for another week and keep collecting data and see how I do and if at the end of the third week I am still okay I will try another 5% drop. Because this medication is causing issues with sodium and fluid balance my primary care doctor wants me to stay very slow with this because correcting this type of imbalance in the body can cause severe problems so for now 5% drops will be it until this side effect goes away and then I can reassess.  Once my blood work shows that the side effect is definitely gone I will probably be able to go faster. So even though I was scared to death to start doing this taper because of what happened with the Seroquel I can confidently say now that this is nothing like coming down off of Seroquel and nowhere near as intense. It's still not an easy thing to do but it seems like this won't be too bad.

[tsranga]

11 minutes ago, FeralCatman said:

Seems like often times it's more about learning to cope then being able to find the root cause and fix it. For my own problems I have found that once I Let Go and just let it happen and know that it's going to pass it all became easier to deal with and even when I'm having an episode of suffering now I still feel peaceful underneath it.

Exactly.. what I was trying to say was the mind can go off in tangents when you are in a flare, but it always comes back to being sensitive to drastic and frequent weather changes.. and I follow the same approach to coping with the discomfort.  

 

I am enrolled in a Stanford study to understand pain holistically (inflammatory markers, microbiome, pressure/temperature stimuli etc). It seems to be an interesting study (I can send the file separately as it seems to be large for attaching here).  

 

Yesterday during the MRI, I experienced a heat surge from the abdomen (usually triggered by GI activity) that triggered a panic attack as I was unable to alter my body position to help with GI movement.  The suddenness of it after many months was overwhelming, but i was able to stabilize much faster thanks to all the acceptance work that I have been doing.  However, as you know, this can be exhausting when there is no breathing room.. 

 

I found a good article on weather changes and their potential impact on our bodies. 

 

https://www.sciencedirect.com/science/article/pii/S0361923023001211?fbclid=IwAR2DoCuJfEw4inev7nepK_VHtQ9TyOpMF6CpSRZYMVPnEMlBXbY50hCzhzM

 

[FeralCatman]

19 hours ago, FeralCatman said:

UPDATE

 

I heard back from my primary care doctor and my psychiatric provider and they both received their copy of Dr Horowitz's book "The Maudsley Deprescribing Guidelines". They both said thank you and both said they were going to start reading it right away. I let them know there was going to be a quiz at our next meeting. 😁 I just purchased four more copies to start sending out to Providers at the VA and wanted to buy more but Amazon will only let me buy four at a time so I have to wait until this order clears and then I'm going to do it again until they all have a copy. There are 11 psychiatrists at the VA in my state so that's five down and six to go. 😁✌️😻😻😻

Assuming this website has several thousand active members let's say maybe 5,000 then the following would be true.

 

If each of those 5,000 active members were to purchase a copy of the deprescribing guidelines and give it to a provider that they work with then that would be 5,000 providers that now have the information. Even if only half of those providers took it serious that would still be 2,500 providers that will now be able to help people get off these medications safely and that is no small number. As those providers start using this information successfully they will ultimately talk to other providers and this is how the Improvement in the system that we need can really get started. If they don't have the information things won't change.

 

For those that might say that doctors are too stubborn and that this won't work I would say that the other choice is to not do it and then there is a high probability that change will not happen so better to try than to do nothing. I do feel that this is one of the best things that each of us can do to try and make a difference overall so I encourage anybody with the money to buy a copy or two of the book to give one to your provider and let's get this information out there.

[Mittenraised]

11 hours ago, FeralCatman said:

Assuming this website has several thousand active members let's say maybe 5,000 then the following would be true.

 

If each of those 5,000 active members were to purchase a copy of the deprescribing guidelines and give it to a provider that they work with then that would be 5,000 providers that now have the information. Even if only half of those providers took it serious that would still be 2,500 providers that will now be able to help people get off these medications safely and that is no small number. As those providers start using this information successfully they will ultimately talk to other providers and this is how the Improvement in the system that we need can really get started. If they don't have the information things won't change.

 

For those that might say that doctors are too stubborn and that this won't work I would say that the other choice is to not do it and then there is a high probability that change will not happen so better to try than to do nothing. I do feel that this is one of the best things that each of us can do to try and make a difference overall so I encourage anybody with the money to buy a copy or two of the book to give one to your provider and let's get this information out there.

I certainly agree. I wish my family Dr. would listen. He told me I can jump off at my current dose. Then told me, I would most likely "go off the rails." Like I have some form of mental issue. I am going to bring him an issue anyways. 

[FeralCatman]

@Mittenraised  It has taken me years of reading studies and then bringing them to my providers to really get them to listen. Overcoming their training happens slowly so you just have to keep at it. Now that this book is published doctors are more likely to listen because it is a publication written by doctors for doctors in the language that doctors speak. The only thing I can say to anybody is don't give up on getting them to understand you have to keep at it because if you stop trying then it's never going to happen.

[Catina7]

On 3/2/2024 at 6:02 AM, FeralCatman said:

Assuming this website has several thousand active members let's say maybe 5,000 then the following would be true.

 

If each of those 5,000 active members were to purchase a copy of the deprescribing guidelines and give it to a provider that they work with then that would be 5,000 providers that now have the information. Even if only half of those providers took it serious that would still be 2,500 providers that will now be able to help people get off these medications safely and that is no small number. As those providers start using this information successfully they will ultimately talk to other providers and this is how the Improvement in the system that we need can really get started. If they don't have the information things won't change.

 

For those that might say that doctors are too stubborn and that this won't work I would say that the other choice is to not do it and then there is a high probability that change will not happen so better to try than to do nothing. I do feel that this is one of the best things that each of us can do to try and make a difference overall so I encourage anybody with the money to buy a copy or two of the book to give one to your provider and let's get this information out there.

 

This is a good suggestion @FeralCatman.  Change has to start somewhere, and every little bit helps.  What do you think about sending copies to major organizations like The American Psychiatric Association and The American Medical Association?  If they have this information, then they can always funnel the information down to the prescribers themselves.  

[FeralCatman]

@Catina7  I would say that if you only have the funds to purchase one or two copies of the book then I would say take it to your provider. If you have the funds to purchase multiple copies then it may not be a bad idea though I don't know how the American Psychiatric Association would react to the book or if they would even read it.  They have a huge interest in continuing to prescribe and are pretty heavily tainted by the pharmaceutical industry. I would say the best Targets would be providers in the field and perhaps chiefs of medicine and chiefs of psychiatry at your local hospitals. So many Primary Care and Family Medicine providers are prescribing these medications that they would be excellent people to send the book to. Dropping a copy off at your local pharmacy for the pharmacist to read would also be a good idea. This is why I have chosen to get the names of all the MD/DO psychiatrists at the VA in my state because they are working with patients everyday and at least one or two of them will take the time to thumb through and read the book and once they do they'll start to talk and especially once they all realize they all got a copy in the mail that should get their attention. Once I'm done at the VA I will probably do some of the above as well and I might even buy a copy or two to leave in a waiting room at my local hospital in the magazine rack as well as in the waiting room at the VA.

[Catina7]

28 minutes ago, FeralCatman said:

They have a huge interest in continuing to prescribe and are pretty heavily tainted by the pharmaceutical industry.

 

Very true unfortunately....good point.  

 

 

[FeralCatman]

UPDATE

 

Last night I had something happen that hasn't happened since I was probably 7 years old.

 

I had a normal dream.

 

Instead of the crazy disconnected from reality terrifying dreams that I usually have it actually woke me up feeling good and comforted and that is very very new. So in addition to having more and more days of peace and contentment now I can add that to the list of things that are getting better.

 

I fully expect to have some issues while tapering the Tegretol but as I said before it is nowhere near as bad as the Seroquel and as long as I follow my own advice and go "slower is faster" it seems like it should be okay. I let go of any idea of a timeline for getting this taper done all that matters is getting it done however long it takes.

 

Not sure what the dream means if anything at all other than something good is definitely happening. The last time I had dreams that were comforting and pleasant   was as a kid when I used to dream about flying and it's a very welcome phenomenon after all of these years.

 

Healing is happening 😁✌️😻😻😻

 

[Catina7]

31 minutes ago, FeralCatman said:

"slower is faster"

 

Love this!  😊

[2cats2272]

Slower likely is much faster! Nice work 

[FeralCatman]

UPDATE

 

I had a meeting with my psychiatric provider at the VA. She has her copy of Dr. Horowitz's book. Tomorrow is a statewide provider meeting and she is going to present what she has read so far at that meeting. I purchased 4 more copies this month and will send them out tomorrow. One of those is going to the Chief of Psychiatry at the VA in my state. Next month I will do 4 more then again the following month until all of them get a copy.

 

If things within a big system like the VA start to change then that will help bring change to the systems outside of the VA. Slowly of course but any change like this will be slow. However, slow change is better than no change.

 

Change is happening 😁✌️😺😺😺

[Catina7]

15 minutes ago, FeralCatman said:

slow change is better than no change

 

True!  You've been coming up with some great phrases lately lol!  

[FeralCatman]

LAST UPDATE FOR AWHILE

 

Just wanted to let people know that this will be my last update for quite awhile. The Seroquel journey is complete and I have moved on to Tegretol. For now this will be a slow taper due to the fluid/electrolyte imbalance issues that my PCP says need to be corrected slowly. So, there won't be much new to tell for quite awhile. The 5% cut didn't destroy me or my functionality so the rest of this process is to just slowly plod along until it's done same as I did with the Seroquel. Slower is faster as I have said many times.

 

I am feeling the need to move on from all of this and start getting back to life again. I need to get out of the being sick headspace and start in with as much as a normal life as possible. Surviving Antidepressants has been an invaluable resource for me and I've learned a great deal from the moderators and the community. I now consider myself properly informed and well able to continue down this path without doing further damage. I've tried to contribute as much as I can while I've been active here. I sincerely hope the information about myself and the references I've posted have been helpful. My Primary Care Provider now has Dr. Horowitz's book as does my psychiatric provider and myself and they are reading it and I also have access to the withdrawal coaches if needed as well as Dr. Horowitz himself. So, I feel it best at this point to turn my care over to that support network that is now well and properly informed. I have an extensive trauma history and am working on that in therapy and it is that history which is now making the law of diminishing returns applicable in this case as some of what I have learned online has fed into that trauma. One of the hazards of CPTSD is that it will latch onto anything it can in a misguided attempt to protect you but as a result the anxiety you struggle with just gets worse. This seems to be happening in my case. So, I need to limit my exposure and go back to the rest of my life.

 

Thank you all so much for all of the support and information. This website does truly save lives, including my own, and I am grateful.

 

When I am done with the Tegretol taper I will come back and post an update and when I am finally off everything I will post another update. That of course is a long way a way.

 

I want to leave this thread for now with one final video. It is also posted elsewhere on this site. There is hope for everyone here. Protracted withdrawal has an excellent long term prognosis. Everyone heals it's just the timeline that's different.

 

Healing is happening for all of us. Just hang in there and it will come.😉✌️😺😺😺

 

 

Also, here is a list of resources and a few other things that I have found helpful.

 

 

 

 

[Mittenraised]

Take care @FeralCatman. I wish you all the best in your life and health.