Antipsychotic survivors? Interested in your stories

[FeralCatman]

On 6/30/2023 at 8:00 AM, FeralCatman said:

 

MY SEROQUEL SUCCESS STORY

 

Now that I have called it 'Recovered From Seroquel' it's time to write my success story from this part of my de-prescribing jouney.

 

I was put on Seroquel in October of 2006. I jumped off of it on August 1, 2021 so that's just shy of 15 years. My maximum dose was 800mg. When I started tapering I was on 700mg. Shortly after being put on it I reached my peak weight of 269 pounds. The following year I started down the journey of recovering my health and quit smoking, quit drinking, started eating better, and started exercising. I still don't drink or smoke and am in far better shape.

 

The following are some of the side effects I experienced while on this drug. I am doing this from memory so the list will not be complete. My thread has symptoms I experienced listed in various places that probably include the ones that don't make the list. This however is enough to let you know how very sick this stuff made me.

 

1. Weight increased to 269 pounds. This was blamed on me.
2. Medication dependent diabetic taking metformin twice a day. This was blamed on me.
3. High cholesterol requiring medication. This was blamed on me.
4. High blood pressure requiring at times 2 medications. This was blamed on me.
5. Worsening thyroid function requiring increased medication. This was blamed on my body.
6. Chronic GERD requiring medication. This was blamed on me.
7. Massive increase in joint and back pain / Ankylosing spondylitis pain requiring daily high dose NSAIDS. This was blamed on my body.
8. Bone spurs which according to recent studies were actually caused by this medication. This was blamed on my body.
9. Later in treatment I developed what felt like all day anxiety attacks for which additional medication did not help. This was blamed on me.
10. Later in treatment, around 2014, after getting much healthier with habits and diet and exercise, I developed a bundle branch block in my heart. This was blamed on me.
11. Later in treatment the sedating effects reversed and my circadian rhythm shifted. Once that happened I would take the Seroquel at night when I got tired and it would wake me up. I would then be up until 2 am and not get up until noon. This was diagnosed as delayed phase sleep disorder and was told it was permanent. This was blamed on years of shift work. ie: It was blamed on me.
12. First 2 hours after getting up at noon I was non functional.
13. Later in treatment I developed tremors in my hands in the morning that got so bad it took 2 hands and concentration to hold a coffee cup. It got to the point that the tremors were so bad I was tossing dishes and broke most of my old set of dishes. I was diagnosed with a form of epiliepsy.
14. I discovered that in order to lose weight and maintain that weight loss I could only eat 1600 calories a day regardless of what I ate. I was able to get down to 185 pounds by lots and lots of exercise but could not maintain it. Eating 1600 calories and living normally without crazy exercise I was able to maintain 195-205 lbs. No one believed me and I was encouraged to eat more.
15. Chronic systemic inflammation as evidenced by my SED Rate blood test. This number returned to normal as I reduced the medication.

 

There are many more I can't remember at the moment but you get the idea. Every one of these symptoms improved or outright disappeared when I was tapering and after I jumped off the medication.

 

1. I am now down to a steady 165 pounds on a normal dietary intake with minimal exercise at the moment.
2. I still have Ankylosing Spondylitis pain but it is to the point where I don't need NSAIDS every day.
3. Diabetes is gone
4. Blood pressure is normal
5. Cholesterol is only slightly high, probably due to meds I am still on, and requires no medication
6. Heart block is gone
7. Thyroid function is much better and I am on less than half the medication. This may improve as I reduce the Carbamazepine.
8. GERD is gone
9. Pain from bone spurs is gone
10. Circadian rhythm is normal
11. Tremors are gone. I don't have epilepsy.
12. Inflammatory markers are normal now.
13. No more all day panic / anxiety attacks
14. Paranoia is better not worse as I was told it would be.

 

As I said today's write up is from memory and there is more but this is enough to get the idea accross. This stuff was making me horribly sick and I am glad it's gone despite the withdrawal madness that I have gone through.

 

Here are the important dates and timeline.

1. Time on the drug. 14 years 10 months
2. Maximum dose 800 mg
3. Started tapering April 1, 2018
4. Finished tapering August 1, 2021
5. Total time to taper 3 years and 4 months ( 40 months)
6. Jumped off at 6.25 mg
7. Recovery time 1 year 10 months and 28 days (22 months 28 days)
8. Total time for tapering and recovery 5 years 2 months 28 days (62 months 28 days)

 

As you can see throughout my thread the tapering and withdrawal process from this medication was a nightmare for me. Pardon the language but it's F****** awful and downright terrifying. I was in the Submarine Service and worked a dangerous job as a civilian and this is by far the hardest and scariest and most dangerous thing I have ever done. Most of the symptoms are gone or are very minimal now. Please not that I am actually about 90% recovered but issues with my other medications require I immediately start tapering. That said I expect that within the next year, probably within just a few months, I would have been 100% recovered. I say this because in addition to all of the crazy withdrawal stuff that has happened I have noticed a few things over the last few weeks that make lead me to this conclusion.

 

1. The Nocturia I developed after jumping off is going away and I am having more and more nights of extended sleep.
2. Food sensitivities are gone and I seem to be able to eat most things again. Waiting on another allergy test to see where I am at with my Corn, Wheat, Soy sensitivities that started after I jumped off and am still largely sticking to a restrictive low histamine diet.
3. Digestion seems to be largely healed.
4. My tolerance for people seems to have mostly recovered and I am no longer stressed when I go out and about.
5. Even my trip to the ER was more like it used to be. I was joking with the nurses and doctor and was not overly stressed about it at all. Just a few months ago the ER would throw me into a panic.
6. With each upset I am recovering very quickly now. Usually within a day or 2.

 

It is the recovered tolerances for stress and people that make me realize I am very close to being done with this Seroquel Saga.

 

Due to the low sodium issue I can't afford to wait this out and cover this last bit of distance to fully healed but I don't think it would have been much longer.

 

So, as you can see from the lists above, this medication made a royal mess out of me and yet I still was able to heal and recover from it. Many things I were told were permanent and / or my own fault or due to other reasons were not. Most of it was due to the medication.

 

All I can say to others on this medication or others like it is that if I can recover from a mess like this then you most likely can as well. Just hang in there and endure and you will get there.

 

Now, it's on to the Carbamazepine Tapering. Fortunately this drug is not the same monster that I just came off of and I am hoping that it will not be as bad. Wish me luck and to those who gave me support through this journey I extend my whole hearted thanks and appreciation.

 

The Feral Catman 😉✌️😺😺

 

 

UPDATE

 

So despite a significant delay I have finally headed down the path of tapering my next medication. I am currently in the process of swapping from extended release Tegretol to immediate release carbamazepine which is the generic immediate release version and once that is done I will start reducing very slowly. At the moment I am on a 50-50 mix of the two versions and giving my body some time to adjust before I finish the process.

 

The waters have been very muddy over the last few months as far as how much is Seroquel recovery and how much is trauma recovery and it seems there's probably a bit of both but it's become hard to know what's what. I am still having some indications of physiological changes occurring as my body repairs itself from all the side effects that I had but they're not severe like they were early on.

 

The main symptom remaining seems to be very low stress tolerances so when I take on too much stress, physical or psychological, which I have a bad habit of doing I get an increase in symptoms such as insomnia but it's relatively mild compared to early on and the worst symptom I have now is just anxiety and some of that anxiety comes out of the trauma of having gone through this process and may have very little to do with the Seroquel itself.

 

So the few things that remain are improving as well just very slowly. As written about on my thread the last few months I've been getting some pretty extreme memory dumps and a lot of emotions that come along with it and a lot of my time has been spent dealing with that more than anything else. Not all of the memories were bad it's just like slowly watching my entire life flash before my eyes and the nice thing is my long-term memory has recovered and now I can recall things from my childhood and my teen years and many other things that just a few months ago had you asked me there is no way I could ever remember it. Also, after that bad wave that I had this summer I started having some of the quietest most peaceful days that I've ever known in my entire life and I didn't even know that you could feel that peaceful and appreciative of just very simple things and it's been so nice to be having days like that. Those days are still happening and even when I have small upsets with anxiety every time that happens I feel even better afterwards. It's almost as if every time it happens your parasympathetic response gets a workout and become stronger and better able to balance things out.

 

At this point there is no way to tell what is the changes in Tegretol and what is left from the Seroquel and also what is trauma recovery so my Seroquel journey is definitely at an end and they're certainly is no risk of my ending up back on it so that chapter of my life is now closed.

 

If you have been poly drugged very heavily like I have been over many years this is a very long hard road but it is not in any way an impossible Road and if you stick with it things do slowly get better. I am going to do this Tegretol taper with 5% cuts and then figure out how often I can tolerate those cuts and hopefully it won't be too bad so we'll just have to see but Seroquel is now permanently in the rear view mirror and I am moving forward.

 

Healing is definitely happening and if it can happen for me with everything that was inflicted on my mind and body then it can happen for you too just keep hanging in there. 😉✌️😻😻😻

[FeralCatman]

1 hour ago, FeralCatman said:

UPDATE

 

So despite a significant delay I have finally headed down the path of tapering my next medication. I am currently in the process of swapping from extended release Tegretol to immediate release carbamazepine which is the generic immediate release version and once that is done I will start reducing very slowly. At the moment I am on a 50-50 mix of the two versions and giving my body some time to adjust before I finish the process.

 

The waters have been very muddy over the last few months as far as how much is Seroquel recovery and how much is trauma recovery and it seems there's probably a bit of both but it's become hard to know what's what. I am still having some indications of physiological changes occurring as my body repairs itself from all the side effects that I had but they're not severe like they were early on.

 

The main symptom remaining seems to be very low stress tolerances so when I take on too much stress, physical or psychological, which I have a bad habit of doing I get an increase in symptoms such as insomnia but it's relatively mild compared to early on and the worst symptom I have now is just anxiety and some of that anxiety comes out of the trauma of having gone through this process and may have very little to do with the Seroquel itself.

 

So the few things that remain are improving as well just very slowly. As written about on my thread the last few months I've been getting some pretty extreme memory dumps and a lot of emotions that come along with it and a lot of my time has been spent dealing with that more than anything else. Not all of the memories were bad it's just like slowly watching my entire life flash before my eyes and the nice thing is my long-term memory has recovered and now I can recall things from my childhood and my teen years and many other things that just a few months ago had you asked me there is no way I could ever remember it. Also, after that bad wave that I had this summer I started having some of the quietest most peaceful days that I've ever known in my entire life and I didn't even know that you could feel that peaceful and appreciative of just very simple things and it's been so nice to be having days like that. Those days are still happening and even when I have small upsets with anxiety every time that happens I feel even better afterwards. It's almost as if every time it happens your parasympathetic response gets a workout and become stronger and better able to balance things out.

 

At this point there is no way to tell what is the changes in Tegretol and what is left from the Seroquel and also what is trauma recovery so my Seroquel journey is definitely at an end and they're certainly is no risk of my ending up back on it so that chapter of my life is now closed.

 

If you have been poly drugged very heavily like I have been over many years this is a very long hard road but it is not in any way an impossible Road and if you stick with it things do slowly get better. I am going to do this Tegretol taper with 5% cuts and then figure out how often I can tolerate those cuts and hopefully it won't be too bad so we'll just have to see but Seroquel is now permanently in the rear view mirror and I am moving forward.

 

Healing is definitely happening and if it can happen for me with everything that was inflicted on my mind and body then it can happen for you too just keep hanging in there. 😉✌️😻😻😻

I forgot to add the statistics.

 

Elapsed time since I started tapering has been 5 years 9 Months and 25 days

 

Elapsed time since I jumped off the Seroquel has been 2 years 5 months and 25 days.

 

I started switching the Tegretol from extended release to immediate release on January 7th so the total recovery time since jumping off the Seroquel has been 2 years 5 months and 7 days

[pyr23]

After my last post I have received a warning to make an introduction.

 

I have updated my signature, and as you can see I've been taking AP most of my

life. These medications are there for life so for me, and a lot of people are like that

I can't taper but I have to find the optimal dosage once again. I did a CT and unfortunately things have been getting worse. Please, if you're taking AP be very careful, you need to financially and socially stable and you can't drop out of whatever responsibilities you have during the day, better learn to accept to side effects and how to manage them. Personally I wish there would be a sticky on the front of this posting that AP are a  very different thing then the AD meds.