FeralCatman: recovering from Seroquel

[FeralCatman]

UPDATE

 

So it seems the recent wave is already subsiding so that is great. That snowstorm and the heavy exertion only cost me 2 days of nervous system symptoms which were pretty bad the first day and now I am just about back to baseline. So, huge improvement over this time last year. This time last year I would have had to have been dressed like the Micheln Man to go outside on even a 40 degree day. Now I am back to being outside in a sweatshirt on a 29 degree day. Big difference. This time last year the exertion would have made me horribly sick for quite awhile and now it's only 2 days. I feel like I am almost recovered. I expect that this time next year this will all be a bad memory.

 

The above posts by Thorin got me curious to see what my blood sugars are doing so I tested last night and this morning.

 

Last night. Supper was Salmon, Potato, Butternut Squash, Vegetable Juice, Broccoli, Kale, Asparagus, Summer Squash, and unsweetened apple sauce for desert.

 

Before Meal : 77

30 Min :         137

60 Min:          138

90 Min:          122

 

This morning. Breakfast was 2 scrambled eggs, potato, Butternut Squash, Vegetable Juice, Asparagus, Summer Squash, Chopped Kale, 1 whole apple

 

Fasting:        103

30 Min:         120

60 Min:         117

90 Min:         115

 

Peak sugars are 30+ points lower than they were just this past summer. So, my glucose intolerance is just about gone and my body is learning how to use insulin again. A few more months and it should all be back to where things should be for a healthy non diabetic adult.

 

 

[FeralCatman]

On 12/21/2022 at 1:14 PM, FeralCatman said:

So it seems the recent wave is already subsiding so that is great.

Well, I spoke too soon. Still having a significant increase in previous symptoms. No Bad days but things are reduced to mediocre and good days again and I am having to take things very slow. Down to 5 hours sleep on most nights. Anxiety is increased again. It's not quite as bad as this past summer after my rheumatology appointment and the long drive which caused my guts to shut down and vomiting, etc. So, it took a lot more stress over 2 days to induce this wave and the symptoms are not as severe but still bad. There is no snow in the near future and I have arranged for someone to plow for the rest of the winter. I have switched back to the easy to digest foods for now to reduce body stress and am hunkering down to rest and wait this out. It took about 2 and a half weeks to recover from the last time  so hopefully this will improve soon.

 

Lesson learned..... Even at 18 months it's still too soon to get cocky and push myself. OOPS. 🙁

 

I will post again when this improves.

 

Thanks again psychiatry. 🤬

[Thorin]

Hi, I just read your attached note on quitting seroquel. Sorry you had to go through such and hell and am glad you’re in a much better place, if not yet completely healed. I’m tapering Lurasidone (and only have a small taper of clonazepam left). I’ve experienced going to the ER with severe rapid onset weakness and fatigue and going to the doctor multiple times trying to find out what’s going on. Apart from my potassium being out one my tests have all come back ‘normal’. They don’t seem to realise that ‘normal’ for one person may not be ‘normal’ for another. Did your ‘physical’ withdrawal symptoms resolve over time? It sounds like they mostly did. I still struggle with physical fatigue and weakness but not as bad as before (still have to finish my taper though) and it no longer scares me as much when it happens now. Sorry to hear about your recent wave. It sounds like it takes more to trigger them now and that you come out of them a little faster?

[FeralCatman]

@Thorin Very sorry for your struggles as well. It really is so unfair that this is what asking for 'Help' turned out to be.

 

This wave, though bad, is not anywhere near as bad as a year ago. I am having many of the same symptoms but less intense and not completely crippling. So far any way. It definitely took a huge amount of stress to set this wave in motion as compared to a year ago. It is not affecting things like driving this time which is a welcome change. I have also learned my lesson about pushing myself while in this state and have slowed way down and am focusing on relaxation which helps a great deal. I am using acoustic therapy via YouTube and it helps immensely. My physical symptoms and physical capacity are greatly improved compared to a year ago though I still am not 100%. The fact that it took 2 days of heavy work clearing 2 feet of the heaviest snow I have ever seen to set this off is the best indicator of how far I have come. Very glad I found someone to plow from now on since my driveway is very long. Please take care. 😉✌️😺😺😺

[FeralCatman]

I just posted this on the music forum.

 

 

[FeralCatman]

I forgot to add in my earlier posts about symptoms that while I was on Seroquel and while tapering my EKG showed a 'Bundle Branch Block'. Were it to progress it becomes life threatening. This was of course blamed on my age and weight and the diabetes. Actually made an ER doc a bit panicky when he saw it and it resulted in 2 trips to a cardiologist. I am happy to report that as of late last summer my exercise stress test showed a perfectly normal EKG. Another supposedly rare side effect of Seroquel now gone. These drugs are just pure evil IMHO.

 

https://www.drugs.com/sfx/seroquel-side-effects.html

 

https://www.drugs.com/cg/heart-block.html

 

 

[FeralCatman]

UPDATE

 

Due to the recent flare up I have switched back to an easy to digest diet of rice, boiled vegetables, and scrambled eggs. Massive improvement in less than 24 hours. I have tried this multiple times and it works every time I start having issues. So, what seems to happen is that when I experience a stress inducing event like shoveling heavy snow for those 2 days or earlier this year a long drive and the death of one of my cats my body and brain get very stressed and starts to move into fight or flight mode. This of course sucks energy away from digestion and redistributes it to more critical systems. On a normal diet there is not enough energy to digest things like nuts or high fiber foods and the digestive process itself becomes a stress and the body responds to that by pushing things further into fight or flight and digestion gets even worse and everything spirals down. Take away the digestive stress and the symptoms very quickly subside. I am going to stay on this diet for a week and then start slowly switching back to a normal diet and see what happens.

[FeralCatman]

On 12/21/2022 at 1:14 PM, FeralCatman said:

So it seems the recent wave is already subsiding so that is great. That snowstorm and the heavy exertion only cost me 2 days of nervous system symptoms which were pretty bad the first day and now I am just about back to baseline. So, huge improvement over this time last year. This time last year I would have had to have been dressed like the Micheln Man to go outside on even a 40 degree day. Now I am back to being outside in a sweatshirt on a 29 degree day. Big difference. This time last year the exertion would have made me horribly sick for quite awhile and now it's only 2 days.

UPDATE

 

This was definitely more than 2 days. However, I am now definitely getting back to baseline. I am back to sleeping 6-7 hours a night, still broken of course, and the cortisol levels have gone back to normal and the anxiety is mostly gone. My body seems to be done panicking. After that first storm there was a second one 5 days later that poured rain on top of the snow so I was out in the pouring rain and freezing temps most of that day as well to clean things up so it wouldn't freeze that night. That is when things really went down hill. From the last normal day I had it has taken 18 days to get back to another normal fully functional day. So, about the same as last time. 2-3 weeks of upset after a major stress event of some sort. That said, this time was not anywhere near as bad as it was a year ago and even last summer after my back injury. This time there was no crippling gut upset or vomiting just some comparatively mild gut distress which is why I changed my diet temporarily to easy body stress. There was no change in temperature sensitivity. My sleep only degraded down to 5 hours and that was only for 4 days. Last year I went weeks with less than 4 hours a night, sometimes 2, sometimes none. The anxiety and cortisol spikes were much less this time and the worst of it was only 4 days vs. many weeks. So, even though this really sucked and was surely disappointing, it did not suck as bad a before. There is definitely a huge amount of recovery that has happened in the last year since it took a huge amount of physical and mental stress to touch this off as compared to previous episodes so my stress tolerances and recovery time have both improved greatly. Yesterday I went for a short hike in the woods of 1.6 miles wearing microspikes and with about 300' of elevation gain and I was and am still fine. One thing I have noticed is that things like walking and exercise involving my core and lower body seem to be okay but upper body exertion seems to trigger symptoms. I have read of other people having this issue as well while in PAWS. I will continue experimenting and will document any improvements as they happen. Overall......YAY!!!!! I am getting there. Even though I still have to be careful and vigilant I expect this trend to continue. 😉✌️😺😺😺

[Sebas]

On 8/15/2022 at 2:58 PM, FeralCatman said:

   I was still drinking half decaf coffee which is a big no no. You are just screwing yourself by doing this. I don’t even drink decaf right now because decaf still has 3% of the original caffeine in it so it is not completely caffeine free. As I now know any substance that in any way acts on the nervous system is just a bad idea while in recovery.

I've been drinking more decaf lately. Didn't know there was still some small percentage of caffein in it. Perhaps i should take less. Thx.

[FeralCatman]

I just posted the following review of 'The GUPTA Program' for brain retraining.

 

 

[tsranga]

On 1/11/2023 at 4:20 AM, FeralCatman said:

One thing I have noticed is that things like walking and exercise involving my core and lower body seem to be okay but upper body exertion seems to trigger symptoms. I have read of other people having this issue as well while in PAWS

This is interesting..  I have noticed the same as well. Do you have any idea why that is so? I feel it has something to do with heat buildup in the upper body that triggers a flight/fight response, but haven't confirmed. 

[FeralCatman]

36 minutes ago, Sebas said:

I've been drinking more decaf lately. Didn't know there was still some small percentage of caffein in it. Perhaps i should take less. Thx.

@Sebas Early on I could not have decaf or anything else with caffeine. I am now at 18months off of the Seroquel and decaf is okay again. My food sensitivites also seem to have abated somewhat. I have found out that I now have a gluten sensitivity that I never used to have. I tried a bagel a few weeks ago and gained about 4 pounds of water weight and my joints all swelled up and became painful. There were other factors so I wasn't sure what caused it. A few days ago I ate a bunch of saltines and the exact same thing happened. So, for some stupid reason gluten is now a no-go.

 

Sorry the paxil is causing you such hardship. Hang in there.

[FeralCatman]

2 minutes ago, tsranga said:

This is interesting..  I have noticed the same as well. Do you have any idea why that is so? I feel it has something to do with heat buildup in the upper body that triggers a flight/fight response, but haven't confirmed. 

@tsranga I haven't the first clue to he honest. I think it is just another strange withdrawal effect that will abate in time. For now I am sticking to core and lower body stuff and in a few months will test things out and see what has changed.

[FeralCatman]

UPDATE

 

Well....apparently I am not recovered from that first storm. We had another wet and wild winter wonder storm. Not anywhere near as much snow. My driveway got plowed but I still had to clear my walkways. Mostly done with a snowblower and only took an hour an a half. That seems to have done me in again. Last night I only slept 4 hours and the night before I slept 5. Was exhausted yesterday and am exhausted this morning. Going to lay low as much as possible for the short term. The gut issues have flared back up as well. Hopefully things will improve before too long.

[FeralCatman]

UPDATE

 

For all of the cat people who post here I have a helpful suggestion to get you through a rough patch like I am going through right now. I have three cats and I just bought a fishing pole with a cat toy on on Amazon. It works just like a fishing pole and it is great fun for them and for me it is fun and it is a great distraction and I can practice my casting technique for the spring.  If you have cats and need a distraction when you are having a hard time this is a great way to do it.😉✌️😻😻😻

[FireflyFyte]

17 hours ago, FeralCatman said:

UPDATE

 

For all of the cat people who post here I have a helpful suggestion to get you through a rough patch like I am going through right now. I have three cats and I just bought a fishing pole with a cat toy on on Amazon. It works just like a fishing pole and it is great fun for them and for me it is fun and it is a great distraction and I can practice my casting technique for the spring.  If you have cats and need a distraction when you are having a hard time this is a great way to do it.😉✌️😻😻😻

 

I might have to look into this! I have three cats currently and am welcoming a new kitten in March.

[FeralCatman]

I just posted an update to my GUPTA Program review.

 

 

[FeralCatman]

UPDATE

 

So, despite 2 additional significant snowstorms, slipping and falling on the ice in my driveway and hitting my head which resulted in a whiplash injury, and another sick cat who now has diabetes and a corneal ulcer, I still seem to be recovering in spite of all of the stress both physical and mental. No depression for 9 days and no anxiety for 5 days. I feel cool as a cucumber and in fact I feel better than I have felt through this whole process which is kind of amazing considering what I just went through. It seems like another correction may have happened. The only thing I can say for sure is that every time I go through a rough patch they get shorter and less intense and I come out the other end a little better than I was when it started. Last night I slept really well for 9 hours and 2 nights ago I slept almost 8 hours and slept really well. The Nocturia (Nighttime Urination) is improving as well. That hasn't happened since December 21, 2020 before I went off the Seroquel. Hopefully this trend continues. I am finishing up month 18 off the Seroquel and Feb 1 will be starting month 19.

[tsranga]

That's great news. Wishing you continued recovery.

[FeralCatman]

I just posted the following about the FDA Adverse Event Reporting System

 

 

[FeralCatman]

I just posted the following on 'In The Media'. It is an interview with the US FDA's Deputy Director for Safety at Their Psychiatric Products Division. Basically, their stance seems to be that informed consent and safety is up to the doctor and patient not the FDA.

 

 

[Jeppe]

Hi, FeralCatman, and, hi, folks,

 

Thank you for writing so much about Seroquel, the drug I know by the name Ketipinor, and with which I am struggling to taper down. Especially, the short (11 pages) history of tapering the drug down, guides me further. It takes me quite some time to follow your path of recovery here, but, some day I will have read these discussions.

 

Nice to hear also about the latest improvements after so long time finishing this drug. 

[FeralCatman]

@Jeppe I am glad the write up was helpful. Everyone's journey will of course be different even though they are similar in a very general way. If I am reading your drug signature correctly it looks like you've made some really big drops in dosage. If you are having a hard time you may want to hold for a few months and then start again much slower especially since you are getting down to the lower dose range. I have found that slower is actually faster and certainly much less likely to cause serious problems. In looking back I wish that I had gone much slower when I got down below 100mg and tapered down to 1 mg instead of the 6.25mg I jumped off at. Hindsight is always 20/20 of course but thought I would let you know. I would hope that by doing that you may avoid some of the harder parts of post withdrawal that I have gone through.

[FeralCatman]

UPDATE

 

I think I figured out why people going through this seem to have issues with upper body exercise while they are healing. My theory is that is has to do with the routing of the vagus nerves down through the chest and into the abdominal cavity. Here is a diagram.

 

 

When you are just doing lower body exercise you are not physically affecting the vagus nerve all that much. Even if you raise your heart rate through lower body exertion the vagus nerve remains largely physically undisturbed. However, looking at how it is routed through the body, when you use your upper body, such as shoveling heavy snow, all of the muscles and ligaments and tendons in the areas where the nerve runs through are activated and are expanding/contracting around the nerve. Your organs also get shifted around somewhat. I suspect this takes an already sensitive vagus nerve and either irritates it or alters its function in some way after the exertion. It would be similar to Sciatica. The specifics of this I couldn't say since I am not a neurologist but it seems to make sense based on this diagram and the nature of the problem. As the body and nervous system heals from the drugs the sensitivity should eventually go down and this problem will ultimately go away. This is already happening with me. I think this is why gentle exercise like walking and stretching seem to be okay with people in recovery but  strength training and heavy upper body exertion is not. I think this is also why Vagus Nerve exercises are so helpful as is meditation. The calmer you are able to keep yourself during this process the less stress there is on an already stressed vagus nerve.

[FeralCatman]

The following article tells me why I am having so much trouble with my back and pelvis and with things being misaligned. If a knee injury can cause changes in brain structure and function which leads to muscle imbalances I would assume that this is what is happening except the injury is not my knee, the injury is actually in the brain and nervous system and while it is healing it is having issues coordinating everything which is causing muscle imbalances which therefore also causes ligament and tendon imbalances. Since things are already getting better this will clear up in time and I should be okay it's just that I don't know when.

 

An ACL Tear Can Affect Your Brain in Addition to Your Knee
https://www.healthline.com/health-news/an-acl-tear-can-affect-your-brain-in-addition-to-your-knee

[peaceandlove]

Are you still having gastroparesis symptoms? @FeralCatman

[FeralCatman]

@peaceandlove No I am not. This last upset from which I am recovering caused a bit of a slowdown in my digestion and some anxiety symptoms but no where near as bad as last year. I had to switch to an easy to digest diet for a bit but am now back to my full diet again. No vomiting or severe cramps or nausea this time and mostly just disturbed my sleep. I am recovering much quicker now.

[FeralCatman]

On 2/5/2023 at 3:52 PM, FeralCatman said:

UPDATE

 

I think I figured out why people going through this seem to have issues with upper body exercise while they are healing. My theory is that is has to do with the routing of the vagus nerves down through the chest and into the abdominal cavity. Here is a diagram.

 

 

When you are just doing lower body exercise you are not physically affecting the vagus nerve all that much. Even if you raise your heart rate through lower body exertion the vagus nerve remains largely physically undisturbed. However, looking at how it is routed through the body, when you use your upper body, such as shoveling heavy snow, all of the muscles and ligaments and tendons in the areas where the nerve runs through are activated and are expanding/contracting around the nerve. Your organs also get shifted around somewhat. I suspect this takes an already sensitive vagus nerve and either irritates it or alters its function in some way after the exertion. It would be similar to Sciatica. The specifics of this I couldn't say since I am not a neurologist but it seems to make sense based on this diagram and the nature of the problem. As the body and nervous system heals from the drugs the sensitivity should eventually go down and this problem will ultimately go away. This is already happening with me. I think this is why gentle exercise like walking and stretching seem to be okay with people in recovery but  strength training and heavy upper body exertion is not. I think this is also why Vagus Nerve exercises are so helpful as is meditation. The calmer you are able to keep yourself during this process the less stress there is on an already stressed vagus nerve.

 

On 2/5/2023 at 4:28 PM, FeralCatman said:

The following article tells me why I am having so much trouble with my back and pelvis and with things being misaligned. If a knee injury can cause changes in brain structure and function which leads to muscle imbalances I would assume that this is what is happening except the injury is not my knee, the injury is actually in the brain and nervous system and while it is healing it is having issues coordinating everything which is causing muscle imbalances which therefore also causes ligament and tendon imbalances. Since things are already getting better this will clear up in time and I should be okay it's just that I don't know when.

 

An ACL Tear Can Affect Your Brain in Addition to Your Knee
https://www.healthline.com/health-news/an-acl-tear-can-affect-your-brain-in-addition-to-your-knee

 

I talked to my physical therapist yesterday. In trying to figure out what is causing these strange shifts in body alignment I discussed the ACL article with her about brain changes from physical injury. I also discussed my idea about Vagus nerve routing causing problems with upper body exercise during recovery. She thought about it and agreed with me on both ideas. Also, we came to the conclusion that the upper body exercise problem is probably a combination of the Vagus nerve routing and the brain changes that happen during recovery. Lower body motion is much simpler and easier for the brain to coordinate. Upper body exercise requires a lot more brain power to coordinate due to the much greater complexity of muscles, ligaments, and tendons that get used during upper body exertion, especially if you are twisting around like during shoveling snow. It also generates a lot more nervous system electrical and chemical activity which creates a strain on the system. Combine that with having to clench the gut and flex the legs to lift heavy snow and move it and the brain and nervous system gets overloaded trying to coordinate all of that movement and then causes a symptom flare due to the overload which will manifest differently in each of us. The good thing is that this will ultimately repair itself. It's just a matter of time and patience.

[tsranga]

This is a very good article - 

https://franklincardiovascular.com/do-i-have-pots/#:~:text=Many physicians do what is,increase over 30 beats per

What was really validating was this - 

Patients with POTS have various other autonomic dysfunction symptoms, such as irritable bowel, abnormalities with sweating, temperature regulation and bowel and bladder function abnormalities..

Therefore, it is not an all or none phenomenon in autonomic dysfunction to diagnose or not diagnose POTS based on heart rate responses.

 

Many of the other symptoms of POTS, which are visceral pain, motility disorders of the GI tract and bladder, chronic pain, headaches, dizziness and fibromyalgia-type symptoms actually reflect abnormal central processing of inflammation relayed by the nucleus and solitary tract (NTS) and the parabrachial nucleus (PBN).

[Mittenraised]

11 hours ago, FeralCatman said:

 

 

I talked to my physical therapist yesterday. In trying to figure out what is causing these strange shifts in body alignment I discussed the ACL article with her about brain changes from physical injury. I also discussed my idea about Vagus nerve routing causing problems with upper body exercise during recovery. She thought about it and agreed with me on both ideas. Also, we came to the conclusion that the upper body exercise problem is probably a combination of the Vagus nerve routing and the brain changes that happen during recovery. Lower body motion is much simpler and easier for the brain to coordinate. Upper body exercise requires a lot more brain power to coordinate due to the much greater complexity of muscles, ligaments, and tendons that get used during upper body exertion, especially if you are twisting around like during shoveling snow. It also generates a lot more nervous system electrical and chemical activity which creates a strain on the system. Combine that with having to clench the gut and flex the legs to lift heavy snow and move it and the brain and nervous system gets overloaded trying to coordinate all of that movement and then causes a symptom flare due to the overload which will manifest differently in each of us. The good thing is that this will ultimately repair itself. It's just a matter of time and patience.

I appreciate your story of success. I am just starting a taper of seroquel. It gives me hope. I'm sure from reading your story that I'm in for a fair amount of discomfort and suffering.

 

I'm very happy to have found this forum and for the people here.

 

 

[FeralCatman]

@Mittenraised Glad you have found my thread and input helpful. This is a tough process no doubt. I am in Month 19 post Seroquel and even though I have made huge progress I am still very prone to nervous system upsets that generate all kinds of symptoms. My primary care doctor thinks it may be as long as another 2-3 years to see a full recovery however that is only a guess. It could be sooner or it could take longer. There is no way to know and that is the scariest and most frustrating thing with all of this. No timeline. The suffering is open ended. What I do know is that people recover and move on. I am showing strong signs of recovery so at some point this will be over and I will also move on.

 

The best advice I can give you is to go very slowly and pay close attention to everything your body is telling you. If you do a dose reduction and have symptoms give it a good long hold before moving on and taper down to below 1mg before you jump off. Especially if you have side effects like diabetes or metabolic syndrome. The endocrine system seems slow to correct itself. Slower is faster. I wish I had gone much slower once I hit 100mg but I became impatient. I had no guidance so had no way of knowing. At the time I thought I was going slow but with my upgraded knowledge, even though I went slow, it was not slow enough. Hopefully if you do this you will not have as many post withdrawal consequences.

 

You are in a good place to do this. People here are very knowledgeable and very nice.

 

Best wishes on your taper 😉✌️😺😺😺

[FeralCatman]

I just posted the following on symptoms and self care and some may find it useful so I am re-posting it here.

 

 

[Mittenraised]

37 minutes ago, FeralCatman said:

I just posted the following on symptoms and self care and some may find it useful so I am re-posting it here.

 

 

Thank you! I appreciate any and all help. Just to know someone else has went through this is comforting. I feel somewhat trapped. I can't even take a nap. The small things in life you take for granted.

 

Best wishes to your recovery.

[FeralCatman]

@MittenraisedFeeling trapped is certainly a very familiar feeling to me so I know where you're coming from. As I said take it slow and steady and ultimately you will get there but slower is faster and less likely to cause you severe discomfort. If you need to message me at any point feel free there may be a delay in my response but I will reply.

[littlebird]

3 minutes ago, FeralCatman said:

slower is faster and less likely to cause you severe discomfort

 

I needed this perspective shift, thank you! In the long run, slower is faster.

[Mittenraised]

4 hours ago, FeralCatman said:

@MittenraisedFeeling trapped is certainly a very familiar feeling to me so I know where you're coming from. As I said take it slow and steady and ultimately you will get there but slower is faster and less likely to cause you severe discomfort. If you need to message me at any point feel free there may be a delay in my response but I will reply.

Thank you. I'm sure I will take you up on that. 

 

Slower is faster will be how I try to do this. If 10% is too much, I'll try 5% or less. I sure don't want to go through what I went through over Christmas. That was awful. I have never felt so much despair and depressed.