FeralCatman: recovering from Seroquel

[tsranga]

7 hours ago, FeralCatman said:

have a very hard time trusting anyone putting their hands or treatments on or into my body at this point.

I know exactly what you mean. It took me 2 years before I could massage myself, before I saw an acupuncturist, and 4 years to get to a PT. I had a panic attack when I had a massage 2 years ago.

 

Having said that, myofascial PT is very different from regular PT and can actually release stored trauma that keeps triggering panic attacks.

[Thorin]

13 hours ago, FeralCatman said:

@Thorin It is amazing. It's beautiful where I am

Can I ask which state you’re in. I’ve visited a bunch in my two visits to the US but so much I haven’t seen.

[FeralCatman]

7 hours ago, Thorin said:

Can I ask which state you’re in. I’ve visited a bunch in my two visits to the US but so much I haven’t seen.

@Thorin Sorry to have to say no but I keep my specific location private. I like my life quiet and anonymity is the best way to achieve that.

[Thorin]

9 hours ago, FeralCatman said:

@Thorin Sorry to have to say no but I keep my specific location private. I like my life quiet and anonymity is the best way to achieve that.

No problem at all 👍🏻

[FeralCatman]

I just posted the following on 'Symptoms and Self Care' regarding a thing called 'Non-Allergic Rhinitis' which can be caused by medications and by withdrawal induced dysautonomia.

 

 

[FeralCatman]

Not much new to report. Having issues with pain in my leg muscles again after exercise. This happened last year as well. I am getting tests done to check my sodium, potassium, magnesium, calcium, and lactic acid just to be sure but this seems to be a common WD symptoms that comes and goes. Tsranga has given me some good input and any other input on this is very welcome. The more the better.

 

I have talked a lot about diet so I am going to post my diet with all of the nutrition data and my supplements for use and commentary. Anything highlighted in yellow is less than the US RDA for that nutrient. My snacks and the added fiber, salt, and potassium put me over on just about everything.

 

Current Diet and Nutritional Intake Including Vitamins and Supplements

Same Meal Twice Daily

1 whole egg plus 2 egg whites,

1.25 cup white rice with Zuchinni & Summer Squash

Pureed Mix of Baby Kale, Asparagus, & Broccoli

Pureed Mix of Carrots & Cauliflower

Olive Oil Cooked in With the Rice and Eggs

Pureed Apples with Pureed Whole Cranberries, Whey Protein Powder, & Psyllium Fiber Husk

Electrolyte drink in the morning (1oz apple juice, 1 oz cranberry juice unsweetened, pinch of salt and KCL mix, 2 cups water)

Salt and Potassium Chloride added throughout the Day

1500ml water daily minimum plus what is in the food.

Snacks – Rhythm Super Foods Crunchy Vegetable Snacks – Kale, Broccoli, Carrots, and Cauliflower

Vitamins and Supplements (All Nature Made Brand)

Multivitamin x1 daily

Magnesium Citrate 250 mg daily

Vitamin C 1000 mg daily

Vitamin D 1000 IU daily

Fish Oil 2000 mg daily

Added Salt 1325 mg sodium (5/8 TSP)

Added Potassium Chloride 938mg Potassium 2.5 (Scoops with Included Scooper)

Added Fiber 2 TSP

Nutrition Data Including Vitamins (Not Including Snacks or added salt, potassium chloride, and fiber)

Calories 1856

Carbs 215g

Net Carbs 193g 92%

Protein 85 g

Fat 73 g (SF 13G – PUSF 10 – MUSF 47g)

Cholesterol 418 mg

Sodium 975 mg 42 %

Fiber 22 g 73 %

Soluble Fiber 2g

Sugars 55g

Vitamin A 4,085 mg 454%

Vitamin C 1334 mg 1445%

Vitamin D 52.2 mcg 265%

Vitamin E 35 mg 233%

Vitamin K 549mcg 458%

Thiamin 2.6 mg 217%

Riboflavin 3.21mg 247%

Niacin 30.8 mg 193%

Vitamin B6 5.66 mg 333%

Folate 1224 mcg 307%

Vitamin B12 21.24 mcg 885%

Pantothenic Acid 14.6 mg 292%

Biotin 30 mcg 100%

Choline 336 mg 61%

Calcium 853 mg 79%

Iron 19.8 mg 247%

Potassium 2462mg 72%

Phosphorus 595 mg 85%

Iodine 202 mcg 135%

Magnesium 522 mg 125%

Zink 19.6 mg 178%

Selenium 157 mg 285 %

Copper 2.78 mg 309%

Manganese 6.48 mg 282%

Chromium 120 mcg 343%

Molybdenum 75 mcg 167%

Omega 3’s 600mg

Obega 3 ALA 100 mg

Omega 3 EPA 500 mg

[FeralCatman]

I was reading about my EKG and J Wave Pattern abnormalities. My EKG, though the machine now interprets it as normal, still shows a slight early polarization and J Wave pattern abnormality. Turns out this has a strong association with Traumatic Brain Injury and Nervous system damage. This explains why I developed an abnormal EKG while on Seroquel and why it is slowly recovering now that I am off Seroquel and now shows normal. I have noticed slight changes in my home EKG as well over time. So, some direct evidence that Seroquel causes brain injury and also direct evidence that the damage can slowly heal itself. Here is a link that discusses this.

 

https://www.frontiersin.org/articles/10.3389/fneur.2020.597737/full

[FeralCatman]

@FrogieI just got some blood work back and I've developed mild hyponatremia. I have had two low readings so far this year the first one was 132 and today's was 131 and both of those also had slightly low chloride levels. This meets the definition of hyponatremia though it is not severe at this time. I sent the lab work to my nutritionist and will be talking to my primary care doctor about this on Tuesday.  I am wondering if this is something that has been encountered due to withdrawal or is this more likely due to the meds that I am currently on?  Any input would be greatly appreciated.

[FeralCatman]

@FrogieI will add to that given the current diet I am on I may just not be adding enough salt back into my diet so it may be that simple but I would still like to hear what people with more experience than I have to say.

[FeralCatman]

@FrogieAlso, I understand if you and the other moderators cannot reply about the medications due to liability. What I really need to know is if this is something encountered during withdrawal and recovery. Sorry to bother you again but didn't want you all to feel like I was putting you on the spot.

[FeralCatman]

@Frogie

UPDATE

 

So, things have taken yet another interesting turn. As posted above I now have mild hyponatremia (Low Sodium). I requested a series of tests due to leg pain and cramping and suspected magnesium or potassium surplus/deficiency or possibly a lactic acid problem. Some days were bad enough that just getting down the stairs into my basement was tough. All tests were perfectly normal except for the sodium and chloride which were low. We then went on to test thyroid function and that has actually improved again and my ability to convert T4 to T3 has improved so hopefully this is a sign that my thyroid function is slowly starting to recover. Thyroid issues can be another cause of low sodium. My PCP and nutritionist have reviewed my diet and fluid intake which I carefully measure every day and they both agree that is not the issue. My psych provider thinks that the meds are the most likely cause and she sent me information on the meds causing this issue. So, having ruled out all other causes and having a professional consensus the only thing left is the medications. The 2 suspects are the Carbamazepine and the Paxil. Hyponatremia is listed as a very common side effect of Carbamazepine and all drugs in this class are known to cause this issue. Paxil is also known to cause it as are all SSRI's (I think SNRI's as well but I would have to check on that again) but it is seemingly less common. The 2 of them may be having an additive effect. No way to know for sure.

 

My sodium levels were normal until I really started nailing down a super healthy diet earlier this year. Once I started getting the right amount of fluids and only the recommended daily allowance of sodium the problem showed up. I measure everything out every day now so this has been a tightly controlled experiment with getting healthier. The low sodium has probably been an issue for years due to other symptoms like swelling, bloating, rapid weight gain and loss, etc. that were passed off as being due to my diabetes and / or thyroid or diet. That is no longer the case since I am no longer diabetic and my thyroid numbers are excellent and have been mostly well maintained over the years and my diet couldn't possibly be any healthier. So most likely it has been due to the medications all along. Isn't it funny (or not) that it took a move away from the sodium heavy American diet to a much more healthy whole food diet for the issue to show up. Due to the medications my attempt to be healthier is what made me sick and made walking painful. Now that I have cranked up my sodium intake the pain is mostly gone and I can walk fine.

 

Since this problem is what nearly killed me the last time due to the Trileptal this makes me very very nervous. I am in fact scared to death right now. For the short term we are going to manage the issue with increased salt intake and no additional fluids above that which I already consume daily (1500mL plus whatever is in my food). This is not a long term solution because high sodium intake is bad for the kidneys, not great for the gut, is just bad overall long term as well. This summer I will have to make the switch from Carbamazepine XR to Carbamazepine IR. Once I am stable on that I will start a slow taper of the Carbamazepine. Once down to 100mg twice daily (1/2 my current dose) I will hold to stabilize. Once stable I will then start a slow taper of the Paxil down to 5mg (1/2 my current dose) and hold to stabilize and do some more testing. This will take 14 months at best possibly longer. Once Stable I will repeat the process and cut my Carbamazepine slowly back to 50mg twice a day and hold and then cut the Paxil back to 2.5 mg and hold to stabilize. Wash, Rinse, Repeat, until both are gone. This is a change from my original plan but the circumstances have changed. I am doing it like this to keep both meds in more equal proportions to each other until I get down to a very low dose since the carbamazepine is calming and the paxil is activating. Once down to a very low dose I will stop the paxil first and stabilize and then stop the carbamazepine and hopefully somewhere along the way down this problem will resolve itself. I am also hoping my immune deficiency will also resolve itself since the carbamazepine is the primary suspect for that. If any of the moderators or anyone else thinks this is a bad plan please let me know why and what the alternatives are.

 

I had been hoping to wait for more stabilization and for my guts to completely heal but this new information opens up the possibility that, due to the meds that I am on causing issues, I am about as healed up as I am going to get for now. No way to know for sure without trying the reduction and I don't want to waste too much time waiting for something that may or may not happen. So, this is the continuing adventure of modern psychiatric poly-pharmacy. It's a *$@!show. Thanks psychiatry for all of your help. Much appreciated 🤬

[FeralCatman]

UPDATE

 

Separate from the above update there is some good news to report. Back in February I had a very severe recurrence of withdrawal symptoms. It put a fear in me that I was going to have a repeat of last year in which the symptoms lasted from late December all the way through the end of April. Well, here we are half way through April and that did not turn out to be the case. During this time I have had 3 separate waves of symptoms. One in February, then a month later in March, then a Month later in April. Each lasted 5-6 days and then recovered and in between I have been much better than last year. This last wave had clear triggers. The first 2 did not. They all happened right around the time of the Full Moon funny enough. There is definitely a heightened sensitivity to seasonal changes going on that I had previously attributed to seasonal allergen exposure. This year I have been very careful with allergen exposure but the symptoms happened anyway so it seems like the changes in sunlight, clocks, and weather are a trigger for me that has been worsened by the recovery process. I think this has been the case for many years since spring is always a hard time for me. If the same pattern holds this year then I only have a week and a half to go and I should be in the clear again. If that turns out to be the case then this spring is to be taken as a definite sign that my body is healing and becoming more adaptable. It's not there yet but I expect the trend to continue and since my current meds are causing problems as I discussed in the above post the current symptoms may in fact be at least partially due to the meds that I am still on. No way to really know until I am off them. So, all in all good news now that we are half way through spring. Healing is definitely happening. 😉✌️😺😺

[Frogie]

@FeralCatman

 

I'm sorry to hear this, but sodium levels can change daily even.

 

I had a low sodium count last time I had bloodwork done and my dr said to eat a little more salt and don't drown yourself in water.

 

I hope everything else is ok during withdrawal. It is the pits. But look how far you've come!

 

 

[FeralCatman]

@FrogieThank you for getting back to me. Low sodium has been consistent since the beginning of the year. This is when the leg pain and weakness started. 1.25 tsp added salt daily seems to be the minimum needed to fix the issue. The low salt also seems to affect mood and increase anxiety as once I had it in my system for a day I relaxed and felt a lot better. My nutritionist, psych provider, and primary care doc all agree it's the meds. Got clearance yesterday to add up to 10g salt daily (2 tsp) if needed and as long as I don't need more than that it shouldn't cause issues.  So I can continue that until I am off everything. I get checked again in 3 weeks to see how things balance out. If things go back to normal I'll know I have the proportions correct. So, this summer I will start to implement my plan to cross over to Carbamazapine IR and will take it from there one day at a time. I assume my tapering plan makes sense since I have had no replies on it so that's what I will go with.

[FeralCatman]

I just posted this and for anyone in the USA who is on VA or SSA benefits this may interest you.

 

 

[FeralCatman]

@Altostrata I signed up to be on the wait list for Outro Health (https://www.outro.com/us) as did my psychotherapist. She is trying to learn everything possible to help me and her other clients. I received a link from them that gives free access to their library of resources that is available to patients and those on the wait list. I know that you and other senior SA members are advisors to this program. It is excellent and is a fantastic resource. I have already signed up for 2 online programs that are free. When it is available in the USA I plan to become a patient for my remaining medications.

 

I wanted to express thanks for helping to make this valuable resource a reality. It is very badly needed and such a relief to see this program has started and is expanding. I am sure it will, over the long haul, help to precipitate changes system wide both in Canada and the USA as well as world wide. Thank you so much for everything you do. 😉✌️😺😺

[Thorin]

10 minutes ago, FeralCatman said:

@Altostrata I signed up to be on the wait list for Outro Health (https://www.outro.com/us) as did my psychotherapist. She is trying to learn everything possible to help me and her other clients. I received a link from them that gives free access to their library of resources that is available to patients and those on the wait list. I know that you and other senior SA members are advisors to this program. It is excellent and is a fantastic resource. I have already signed up for 2 online programs that are free. When it is available in the USA I plan to become a patient for my remaining medications.

 

I wanted to express thanks for helping to make this valuable resource a reality. It is very badly needed and such a relief to see this program has started and is expanding. I am sure it will, over the long haul, help to precipitate changes system wide both in Canada and the USA as well as world wide. Thank you so much for everything you do. 😉✌️😺😺

I didn’t realise the SA teams advised on this and I wish to say thank you also. I can’t wait until we have a resource like Outro in Australia. In good time I guess.

[FeralCatman]

On 4/20/2023 at 1:04 PM, FeralCatman said:

@FrogieThank you for getting back to me. Low sodium has been consistent since the beginning of the year. This is when the leg pain and weakness started. 1.25 tsp added salt daily seems to be the minimum needed to fix the issue. The low salt also seems to affect mood and increase anxiety as once I had it in my system for a day I relaxed and felt a lot better. My nutritionist, psych provider, and primary care doc all agree it's the meds. Got clearance yesterday to add up to 10g salt daily (2 tsp) if needed and as long as I don't need more than that it shouldn't cause issues.  So I can continue that until I am off everything. I get checked again in 3 weeks to see how things balance out. If things go back to normal I'll know I have the proportions correct. So, this summer I will start to implement my plan to cross over to Carbamazapine IR and will take it from there one day at a time. I assume my tapering plan makes sense since I have had no replies on it so that's what I will go with.

Had another BMP test today. Sodium is back to 137, chloride is 105, and for the first time on a lab test my glucose was normal. It takes almost double the US RDA of sodium daily to get the sodium to normalize but since I like salty snacks it wont be an issue. So, this will work for now. I will transition to immediate release carbamazepine this summer and let my body adjust. After my fall boodwork and gut testing results are in, if everything looks good, I will start tapering again. 😁

[FeralCatman]

I have been  trying to learn a bit more about pharmacology and pharmacodynamics. They are certainly complicated subjects with a lot of new terminology to learn and understand. For those who are interested I found a good link for basic pharmacology from the University of Arizona Veterinary Program (Pharmacology is Pharmacology) for those interested in trying to learn more about the subject.

 

https://opentextbooks.library.arizona.edu/cvmpdynamics/front-matter/introduction/

 

I also found an article that confirms what I and all of you have found out the hard way and that is Doctors training in pharmacology in medical school is inadequate. This is a known issue and has been for a long time which explains much of the prescribing that gets done. Not an excuse but an explanation of why things end up getting done the way they do.

 

https://pubmed.ncbi.nlm.nih.gov/19112717/

 

I finally found a chart that graphs out Seroquel binding affinities vs. dosage and it's effects and uses at various doses.

 

 

So I was right about part of things in my original tapering summary and that is that Seroquel only affects dopamine at the higher dose range of 400mg and above. Possibly there is some minor effects down to maybe 200mg. Below that you start stepping down through the various receptors until you end up with only histamine receptors being affected. However, I got the dose levels wrong. Even at 25mg Seroquel is still significantly affecting the other neurotransmitters and it really only becomes solely an antihistamine at doses below 25mg. This explains why even people taking a 'Low Dose' of 50mg or 100mg for sleep still have a very hard time coming off the drug because in reality this is an extremely powerful drug even at a 'Low Dose' of 25mg let alone 50mg or 100mg.

 

Awhile back I found a chart that shows how the receptor occupancy of 5HT2 Serotonin receptors rapidly increases to 80% at very low plasma levels in the blood. Here is that chart.

 

 

It's very powerful even at lower plasma levels. Since serotonin is affected at low plasma levels then as an antihistamine taken for sleep you could probably take 1/4 of a 25mg tablet and that would be enough to knock you out (6.25mg) with little effect on serotonin. This is the dose I jumped off at.

 

This information probably explains why I have had such a hard time even after tapering for 3 years 4 months. When I went under 100mg I did slow down but not nearly enough and since I was just cutting pills into quarters the % dose reduction got bigger as I got lower but I assumed it would be okay because it was such a 'Low Dose'. That was a bad assumption because my hyperbolic taper turned into a linear taper when I got to 100mg and I didn't understand the consequences of that. Also, when I hit 25mg I continued to cut the pills into 1/4 pills and so that last 25mg was a 25% drop, a 34% drop, and lastly a 50% drop. Now I am suffering the consequences. This emphasizes the importance of the 10% tapering rule so you don't do this to yourself. Wish I had known but I had not yet found SA. Moving forward I understand this much better and can apply lessons learned to my next taper. Nothing like learning the hard way and please don't do this to yourself. It's definitely not worth it. 🤒

 

(NOTE: If I ever post inaccurate or out of date data please correct me. I am still learning and am an amateur but I want to get my understanding of all of this correct so I can protect and advocate for myself properly in the future. I also don't want anyone to get led down a harmful path based on anything I post. So please correct away when needed. I value constructive criticism and won't be offended, I will be grateful. Knowledge is power. 😉✌️😺😺)

[FeralCatman]

Please know that the 'Outro Health' library has this type of information posted for many of the antidepressants if you are interested.

[tsranga]

Good information. That is why in our mirtazapine group we recommend a very slow taper due to the high receptor occupancy at low doses. Most doctors have no clue about this and advice patients to just stop or taper rapidly (50%) even from high doses. It may be easier to half doses from high doses than it is to do the same at lower doses. 

 

Also we recommend making a liquid solution as cutting pills isn't very accurate.

 

 

[FeralCatman]

I wanted to share something with everyone that at first will be a bit alarming but has a very happy ending and it pertains to these medications and rapid withdrawal. This is an extreme case of medication changes and is not the same as what most people are going through so don't let it freak you out. I have delayed posting this because it could be triggering but think the benefit may outweigh the risks. If you are really having a hard time right now you may want to save this one for later.

 

Back in 2018 I checked into the hospital for extreme anxiety. There were multiple things going on, all med related though I didn't know it at the time. I had a relatively new psychiatrist that I thought was okay. I had been on Seroquel and Carbamazepine (Tegretol) for many years using Xanax as needed very rarely. Looking back I had consistently been getting worse not better. I had been having a hard time so we decided to add a low dose of Paxil. We fiddled with that for a bit and I ended up at 10mg. During that time my thyroid suddenly did a u-turn and I became overloaded on Synthroid for still unexplained reasons. We cut the dose of Synthroid back a bit. Next he thought the Seroquel may be causing issues so he suggested a switch to Zyprexa and we tried that but I started gaining a pound a day and we switched back to Seroquel after about a week. Shortly after we decided to try Oxcarbmazepine (Trileptal) due to a lower side effect profile. It is a close cousin to Carbamazepine (Tegretol). It is known for causing hyponatremia but he reassured me that it was rare and no testing was needed so we did the switch. I trusted him. He was a doctor after all. The anxiety continued to get worse to the point at which it was constant. I had no idea that it was medication and withdrawal related and we attributed it to my thyroid. It became overwhelming and I went and had thyroid tests and my TSH was still rock bottom and my sodium was low at 127 but no one seemed concerned and I went home. Shortly afterwards it became unbearable and I checked into the hospital which is a big hospital that is a level 1 trauma center as well. Supposedly a top notch place. Once in the hospital they realized the Oxcarbmazepine (Trileptal) was causing the low sodium and they stopped it completely and replaced it with Ativan. They also suspected the Seroquel was causing the anxiety and they cut it from 700mg to 500mg. This all occurred within 2 days. I got much worse and was constantly sick and the anxiety was horrific. They kept insisting it was just anxiety and told me to eat some crackers, drink some water, use my coping skills, and go to group. After about 5 days of this things peaked. I had been begging for help and it was ignored. Finally, I made a choice, go into the bathroom and lay on the floor and deal with it myself or ask for help once more. I went out and asked for help and in the process I started to projectile vomit in front of the nurses station. I was leaking out of every hole. My guts had shut down so nothing had gone through. It was awful but they finally realized that it wasn't anxiety and I was actually very sick. They transferred me to the medical ward. They wanted me in the ICU but it was full so they had to bring the ICU to my room one floor down. The nurses were apologetic and took good care of me. I think they had seen this before though they didn't say so directly. When they hooked me up to the heart monitor one of the nurses came running in and asked me 'Does your heart normally look like this?' and drew a bunch of crazy squiggly lines in the air with her finger. I said no and they realized I was teetering on a heart attack. They took blood and my blood was a mess. Everything was off and my sodium was down to 123. 125 is the borderline between tolerable and coma and death. They loaded me up with baby aspirin, salt pills, special IV's to get my electrolytes back in line again and had to call in a kidney specialist. If I had gone into the bathroom that night to lay on the floor and deal with it on my own I would be dead. I was very very lucky. Once in the care of the medical team I recovered enough in a few days to go home. The psych ward tried to keep me but the doctor would have none of it. There is more but you get the idea. I fired my psychiatrist and went to the one I now have.

 

The moral of this story is going too fast with these medications can have very serious consequences so it is why I have posted many times 'Slower is Faster' and certainly much safer. Consequences can be very serious.

 

The silver lining in this is that I finally realized that psychiatry doesn't at all know what they are doing. They are just throwing things at the wall to see what sticks and that's it and when things go wrong they won't recognize it or care. This is why I decided to be done with the whole thing which is a good thing. It was the kick in the pants I needed to help me break away and start deprogramming myself. Unfortunately it nearly cost me my life. After that I was really a mess for awhile with anxiety, some food issues, lingering nerve issues with my heart, and neuropathy that made my skin feel sunburned that lasted about 14 months but I continued to taper and restarted a low dose of Tegretol on my own to prevent seizures from withdrawal. I knew enough to taper slowly and to do one med at a time but not enough to hold for awhile to stabilize first. I didn't know anything about limbic kindling. As time went by I had issues with blood sugar crashes and blood pressure crashes that made me dizzy and resulted in a couple of ER trips and almost falling off my shed roof.

 

The amazing thing is that even though I didn't hold like I should have I still recovered even while tapering and sick. Though a huge amount of misery was involved I was still able to hike and ski a bit. I still was able to put my house on the market, sell it, find a temporary home for me and the cats, buy land, have a house built, do a bunch of projects to finish off the house, built a workshop, built some furniture, drove a friend to New Mexico then make the trip home alone in less than 3 days (over 2,000 miles one way), weather a pandemic, etc all while tapering and dealing with effects of this even after that debacle. All done alone for the most part. It's probably why I am so tired at this point and this withdrawal recovery is taking so long. Just know that however hard it gets it can be done and you do get better. Even now with the limitations I have had since getting off the Seroquel they are slowly getting better and will ultimately be gone. I just had more tests done and everything is recovering. The same will happen for you and everyone else going through this. The body is an amazing thing. It knows what to do if you let it and give it the support it needs. (that support does not include binge eating crab rangoon and KFC 😛)

 

You will get there, mark my words.

 

As a final note I want to say that this story is why I emphasized in my original write up that you should never try this alone. You have to have a doctor involved to consult, run tests, help identify what is a problem and what is just withdrawal, etc. Done improperly this can have very serious consequenses.

[Mittenraised]

1 hour ago, FeralCatman said:

I wanted to share something with everyone that at first will be a bit alarming but has a very happy ending and it pertains to these medications and rapid withdrawal. This is an extreme case of medication changes and is not the same as what most people are going through so don't let it freak you out. I have delayed posting this because it could be triggering but think the benefit may outweigh the risks. If you are really having a hard time right now you may want to save this one for later.

 

Back in 2018 I checked into the hospital for extreme anxiety. There were multiple things going on, all med related though I didn't know it at the time. I had a relatively new psychiatrist that I thought was okay. I had been on Seroquel and Carbamazepine (Tegretol) for many years using Xanax as needed very rarely. Looking back I had consistently been getting worse not better. I had been having a hard time so we decided to add a low dose of Paxil. We fiddled with that for a bit and I ended up at 10mg. During that time my thyroid suddenly did a u-turn and I became overloaded on Synthroid for still unexplained reasons. We cut the dose of Synthroid back a bit. Next he thought the Seroquel may be causing issues so he suggested a switch to Zyprexa and we tried that but I started gaining a pound a day and we switched back to Seroquel after about a week. Shortly after we decided to try Oxcarbmazepine (Trileptal) due to a lower side effect profile. It is a close cousin to Carbamazepine (Tegretol). It is known for causing hyponatremia but he reassured me that it was rare and no testing was needed so we did the switch. I trusted him. He was a doctor after all. The anxiety continued to get worse to the point at which it was constant. I had no idea that it was medication and withdrawal related and we attributed it to my thyroid. It became overwhelming and I went and had thyroid tests and my TSH was still rock bottom and my sodium was low at 127 but no one seemed concerned and I went home. Shortly afterwards it became unbearable and I checked into the hospital which is a big hospital that is a level 1 trauma center as well. Supposedly a top notch place. Once in the hospital they realized the Oxcarbmazepine (Trileptal) was causing the low sodium and they stopped it completely and replaced it with Ativan. They also suspected the Seroquel was causing the anxiety and they cut it from 700mg to 500mg. This all occurred within 2 days. I got much worse and was constantly sick and the anxiety was horrific. They kept insisting it was just anxiety and told me to eat some crackers, drink some water, use my coping skills, and go to group. After about 5 days of this things peaked. I had been begging for help and it was ignored. Finally, I made a choice, go into the bathroom and lay on the floor and deal with it myself or ask for help once more. I went out and asked for help and in the process I started to projectile vomit in front of the nurses station. I was leaking out of every hole. My guts had shut down so nothing had gone through. It was awful but they finally realized that it wasn't anxiety and I was actually very sick. They transferred me to the medical ward. They wanted me in the ICU but it was full so they had to bring the ICU to my room one floor down. The nurses were apologetic and took good care of me. I think they had seen this before though they didn't say so directly. When they hooked me up to the heart monitor one of the nurses came running in and asked me 'Does your heart normally look like this?' and drew a bunch of crazy squiggly lines in the air with her finger. I said no and they realized I was teetering on a heart attack. They took blood and my blood was a mess. Everything was off and my sodium was down to 123. 125 is the borderline between tolerable and coma and death. They loaded me up with baby aspirin, salt pills, special IV's to get my electrolytes back in line again and had to call in a kidney specialist. If I had gone into the bathroom that night to lay on the floor and deal with it on my own I would be dead. I was very very lucky. Once in the care of the medical team I recovered enough in a few days to go home. The psych ward tried to keep me but the doctor would have none of it. There is more but you get the idea. I fired my psychiatrist and went to the one I now have.

 

The moral of this story is going too fast with these medications can have very serious consequences so it is why I have posted many times 'Slower is Faster' and certainly much safer. Consequences can be very serious.

 

The silver lining in this is that I finally realized that psychiatry doesn't at all know what they are doing. They are just throwing things at the wall to see what sticks and that's it and when things go wrong they won't recognize it or care. This is why I decided to be done with the whole thing which is a good thing. It was the kick in the pants I needed to help me break away and start deprogramming myself. Unfortunately it nearly cost me my life. After that I was really a mess for awhile with anxiety, some food issues, lingering nerve issues with my heart, and neuropathy that made my skin feel sunburned that lasted about 14 months but I continued to taper and restarted a low dose of Tegretol on my own to prevent seizures from withdrawal. I knew enough to taper slowly and to do one med at a time but not enough to hold for awhile to stabilize first. I didn't know anything about limbic kindling. As time went by I had issues with blood sugar crashes and blood pressure crashes that made me dizzy and resulted in a couple of ER trips and almost falling off my shed roof.

 

The amazing thing is that even though I didn't hold like I should have I still recovered even while tapering and sick. Though a huge amount of misery was involved I was still able to hike and ski a bit. I still was able to put my house on the market, sell it, find a temporary home for me and the cats, buy land, have a house built, do a bunch of projects to finish off the house, built a workshop, built some furniture, drove a friend to New Mexico then make the trip home alone in less than 3 days (over 2,000 miles one way), weather a pandemic, etc all while tapering and dealing with effects of this even after that debacle. All done alone for the most part. It's probably why I am so tired at this point and this withdrawal recovery is taking so long. Just know that however hard it gets it can be done and you do get better. Even now with the limitations I have had since getting off the Seroquel they are slowly getting better and will ultimately be gone. I just had more tests done and everything is recovering. The same will happen for you and everyone else going through this. The body is an amazing thing. It knows what to do if you let it and give it the support it needs. (that support does not include binge eating crab rangoon and KFC 😛)

 

You will get there, mark my words.

 

As a final note I want to say that this story is why I emphasized in my original write up that you should never try this alone. You have to have a doctor involved to consult, run tests, help identify what is a problem and what is just withdrawal, etc. Done improperly this can have very serious consequenses.

Although I don't post much, I follow this thread daily. As I make my way cutting your information and story is very helpful, and inspiring. It gets me through the dark days. I'm getting ready to cut again to 157.8, from 175. So far the 10% drops have been slightly uncomfortable,  but tolerably.  I suspect as I go further, the problems may start to surface. I took your advice,  and just read it again, " slower is faster." Thank you!

[FeralCatman]

7 hours ago, Mittenraised said:

Although I don't post much, I follow this thread daily. As I make my way cutting your information and story is very helpful, and inspiring. It gets me through the dark days. I'm getting ready to cut again to 157.8, from 175. So far the 10% drops have been slightly uncomfortable,  but tolerably.  I suspect as I go further, the problems may start to surface. I took your advice,  and just read it again, " slower is faster." Thank you!

@Mittenraised I'm glad that what I post has been helpful. Even though in the end I was able to get off Seroquel and stay off of it I still had to learn quite a few things the hard way without even understanding that's what I was doing and if I can help prevent other people from going through that then it's all worth it. Take care and stay strong and I hope the rest of this taper goes well and reach out anytime. 😉✌️😺😺

[FeralCatman]

UPDATE

 

Since Sunday I have had an uptick in anxiety and decreased sleep and increased fatigue. Some of it I attribute to stress and I have changed nothing so another wave. Not as severe as in the past so that's a good thing. I finally got all of my blood work back and it seems that my endocrine system is doing some sort of correction in a positive direction again.

 

My TSH (Thyroid Stimulating Hormone) went down a whole point in about 6 weeks which is good. No change in Synthroid dose so this means thyroid function is improving again. Also, I am converting more T4 into T3 now so my body is doing a more efficient job with the synthroid and converting the T4 to T3 and T3 is actually what the body uses so that's good.

 

My Hemoglobin A1C went down again even though I am eating rice and vegetables. Rice used to be a big problem for me and caused spikes up to 280. Now it never gets above 180 and usually, unless stressed, doesn't peak above 150 no matter what I eat (Haven't tried a spoonful of sugar - Don't want to get carried away).

 

My RDW - CV is back to normal and my RDW - SD is right on the edge of becoming normal. These are measures of red blood cell size distribution. These have been low for awhile and going back to normal is a sign that my bone marrow is finally healing from the drug damage and producing the proper range of red blood cells.

 

Every other value that has been off has gone back to normal and the extra salt has boosted my sodium to 138 and my chloride to 103 which is great. It means I can back down on the salt a little and still be alright and now that I know that number will recover, unlike when I was last in the hospital, I can rest a bit easier now that I know how to manage it and more importantly that it can be safely managed.

 

I am still having some muscle pain and cramps and have to be careful with exercise right now but I think that this endocrine correction that is happening again this year, same time as last year oddly enough, may be the root cause. Sodium levels are probably just an irritant or may even be getting partially caused by this correction but no way to know for sure. The assumption still has to be that it is the Carbamazepine or the Paxil since both are known offenders for this problem. If I can properly manage fluids and electrolytes it takes some of the urgency for a too soon taper of the next drug off of my shoulders. I do feel like the longer I wait to start tapering again the better but this constantly changing and very confusing process is very hard to gauge. Turning into a paranoid Grumpy Gus doesn't help either.

 

All in all, good stuff despite my current misery.

 

Too bad healing has to be so stressful and painful.

[FeralCatman]

Just wanted to take a minute to say thank you to everyone on these boards. I've always been a loner and have been fine with that my whole life. It's always been my natural state. Everything else I've had to deal with in my life was with just myself and the doctors and my therapist for the most part but this process is just beyond my abilities to deal with it myself. It just can't be handled alone and the only ones who are truly able to be helpful are those who have or are going through it. This is certainly a unique experience.

 

 

[Thorin]

37 minutes ago, FeralCatman said:

Just wanted to take a minute to say thank you to everyone on these boards. I've always been a loner and have been fine with that my whole life. It's always been my natural state. Everything else I've had to deal with in my life was with just myself and the doctors and my therapist for the most part but this process is just beyond my abilities to deal with it myself. It just can't be handled alone and the only ones who are truly able to be helpful are those who have or are going through it. This is certainly a unique experience.

 

 

Love this post. Saw your other ones but will respond tomorrow. Time to crash out in Australia!

[FeralCatman]

I just posted this in symptoms and self care about fluids and electrolytes and their importance in recovery.

 

 

[FeralCatman]

UPDATE

 

I am in my 22nd month off of Seroquel. In addition to what I listed in my recent update WRT to bloodwork, I am finally able to get back to something that I really love to do. Feral Cat Rescue. I am going on my first mission this Saturday. Just driving around the state picking up equipment from people who no longer need it but still, a far cry better than this time last year. Also, yesterday I completed my 6th consecutive day of being busy without a complaint from my nervous system. 5 days of working down in my field on my fruit trees and brush hogging a few areas and 1 day in the middle of going to therapy which is a 160+ mile round trip and no issues with the drive. Last night my nervous system started to complain so today I am taking it easy, laid out in the sun, reading a book, etc and I should recover fairly quickly. Seems like my days of being able to be busy are getting to be more and the days of recovery are becoming fewer. I don't work full days on the busy days, they are half days plus taking care of things in the house and starting my days very slow. This spring was a setback but not anywhere near as bad as I had feared it would be. Still going very easy on the guts. I have made food my last priority and activity my first priority. My diet is boring but nutritious and is helping to rebuild my guts so I will consider tackling that after my next round of gut testing.😁✌️😺😺

[Thorin]

3 hours ago, FeralCatman said:

UPDATE

 

I am in my 22nd month off of Seroquel. In addition to what I listed in my recent update WRT to bloodwork, I am finally able to get back to something that I really love to do. Feral Cat Rescue. I am going on my first mission this Saturday. Just driving around the state picking up equipment from people who no longer need it but still, a far cry better than this time last year. Also, yesterday I completed my 6th consecutive day of being busy without a complaint from my nervous system. 5 days of working down in my field on my fruit trees and brush hogging a few areas and 1 day in the middle of going to therapy which is a 160+ mile round trip and no issues with the drive. Last night my nervous system started to complain so today I am taking it easy, laid out in the sun, reading a book, etc and I should recover fairly quickly. Seems like my days of being able to be busy are getting to be more and the days of recovery are becoming fewer. I don't work full days on the busy days, they are half days plus taking care of things in the house and starting my days very slow. This spring was a setback but not anywhere near as bad as I had feared it would be. Still going very easy on the guts. I have made food my last priority and activity my first priority. My diet is boring but nutritious and is helping to rebuild my guts so I will consider tackling that after my next round of gut testing.😁✌️😺😺

Mate it sounds like life is improving significantly and that’s awesome to hear!

[FeralCatman]

14 hours ago, Thorin said:

Mate it sounds like life is improving significantly and that’s awesome to hear!

Thank you. Things seem to be improving. Taking it slow and steady as always. Hopefully things continue. After resting the better part of the day I went out and finished my mulching project and got everything watered. Last night. No complaints from my nervous system. So, the recovery was not even a day this time.

[FeralCatman]

I posted an anonymous question on Quora the other day. The question was:

 

Why are so many doctors still unaware of the overwhelming amount of evidence that has built up against the use of psychiatric medications? Studies done as far back as the 1950s have shown psychiatric medications do great harm.

 

I've had some interesting answers including one from a psychiatrist who, funny enough, and not surprisingly, was the rudest and least helpful response. Other answers have been very useful. If anyone has a Quora account and wants to chime in on this then feel free. Here is the link to the question. If you want to do this anonymously you can get a yahoo.com email without actually identifying yourself and then use it to join. Yahoo seems to be one of the few places left where you can do this. Also, there are many people on Quora who are struggling with the same issues all of us are and it is a good chance to reach out and give them some support. I have already referred several to this website and I have found reaching out to those struggling people to be therapeutic. If you are a member you can read my comments / responses.

 

https://www.quora.com/Why-are-so-many-doctors-still-unaware-of-the-overwhelming-amount-of-evidence-that-has-built-up-against-the-use-of-psychiatric-medications-Studies-done-as-far-back-as-the-1950s-have-shown-psychiatric-medications-do

[Thorin]

42 minutes ago, FeralCatman said:

Thank you. Things seem to be improving. Taking it slow and steady as always. Hopefully things continue. After resting the better part of the day I went out and finished my mulching project and got everything watered. Last night. No complaints from my nervous system. So, the recovery was not even a day this time.

That recovery time is pretty significant based on past posts

[FeralCatman]

24 minutes ago, Thorin said:

That recovery time is pretty significant based on past posts

Definitely. Recovery times even earlier this year were much longer so things seem to be accelerating towards an end point.

[Mittenraised]

6 hours ago, FeralCatman said:

I posted an anonymous question on Quora the other day. The question was:

 

Why are so many doctors still unaware of the overwhelming amount of evidence that has built up against the use of psychiatric medications? Studies done as far back as the 1950s have shown psychiatric medications do great harm.

 

I've had some interesting answers including one from a psychiatrist who, funny enough, and not surprisingly, was the rudest and least helpful response. Other answers have been very useful. If anyone has a Quora account and wants to chime in on this then feel free. Here is the link to the question. If you want to do this anonymously you can get a yahoo.com email without actually identifying yourself and then use it to join. Yahoo seems to be one of the few places left where you can do this. Also, there are many people on Quora who are struggling with the same issues all of us are and it is a good chance to reach out and give them some support. I have already referred several to this website and I have found reaching out to those struggling people to be therapeutic. If you are a member you can read my comments / responses.

 

https://www.quora.com/Why-are-so-many-doctors-still-unaware-of-the-overwhelming-amount-of-evidence-that-has-built-up-against-the-use-of-psychiatric-medications-Studies-done-as-far-back-as-the-1950s-have-shown-psychiatric-medications-do

Great post on Quora. Typically Psychiatrist response. Arrogant Dr. paid off by big pharma. It's disgusting and rather disturbing considering the struggles I have encountered in the last few months...and what's to come. I know I don't need to explain that to you. Thanks for the support!

[snowdog]

6 hours ago, FeralCatman said:

I posted an anonymous question on Quora the other day. The question was:

 

Why are so many doctors still unaware of the overwhelming amount of evidence that has built up against the use of psychiatric medications? Studies done as far back as the 1950s have shown psychiatric medications do great harm.

 

I've had some interesting answers including one from a psychiatrist who, funny enough, and not surprisingly, was the rudest and least helpful response. Other answers have been very useful. If anyone has a Quora account and wants to chime in on this then feel free. Here is the link to the question. If you want to do this anonymously you can get a yahoo.com email without actually identifying yourself and then use it to join. Yahoo seems to be one of the few places left where you can do this. Also, there are many people on Quora who are struggling with the same issues all of us are and it is a good chance to reach out and give them some support. I have already referred several to this website and I have found reaching out to those struggling people to be therapeutic. If you are a member you can read my comments / responses.

 

https://www.quora.com/Why-are-so-many-doctors-still-unaware-of-the-overwhelming-amount-of-evidence-that-has-built-up-against-the-use-of-psychiatric-medications-Studies-done-as-far-back-as-the-1950s-have-shown-psychiatric-medications-do

 

I reeeeeaaaaallyyy hate quora responses in general, but the mental health stuff is the worst. I even blocked quora mail address a few months ago, so I stopped receiving any "suggestion" for questions again. They are a bunch of delusionals and people paid by big pharma to propagate disinformation in order to hide the harm from pills. There is a psychiatrist in quora that answers many people, that I really wanted to punch him every time I saw his answers, probably is the one that answered your question with such arrogance. He is a truly a bad person, probably a sociopath with no empathy for the people he treats (like most of them) .