FeralCatman: recovering from Seroquel

[FeralCatman]

I just posted this soothing YouTube channel under the music heading.

 

 

[tsranga]

On 8/31/2022 at 2:41 PM, FeralCatman said:

However one new one is the headaches that I forgot to mention. They seem to be the worst at the base of my skull and mostly they seem to happen at night after I get up to use the toilet and they are usually short-lived so it seems like having to urinate is creating an issue possibly in my brain stem or the nerve bundle that comes through but I'm not really sure. I suspect that in time these will go away a

I suspect this is due to a POTS/OI like condition. Could be causing coat hanger pain as well.

 

[FeralCatman]

@tsranga Yes, dysautonomia at its finest. At this point I am attributing pretty much everything to that particular demon.

[FeralCatman]

@tsranga After reading the description of what happens as the body repairs itself I am trying to take these waxing, waning, changing symptoms as a good sign. I think of it as my brain going on a sweep and clear mission looking for and repairing damage as it goes. I have definitely seen significant improvements over where I was this spring so it seems to fit.

[FeralCatman]

UPDATE

 

I had my follow up Exercise Stress Test that was ordered during my ER visit last week. They had to raise the treadmill up high and I had to go at a full run to get my heart rate up to target. The only issue I had was painful SI joints. Same as my last one from 2 years ago and same as the one I had 10 years ago. So, in 10 years no measurable changes to my cardiac function. Still waiting for the cardiologist review and report but the test was fine. Very very pleased with this of course and greatly relieved. I also received results from my Tickborne Illness tests and they are all negative. So, it was apparently just another WD induced dysautonomic flare up that came and went that had some funky new symptoms. Also, my fatigue while driving has gone away on most days and fatigue with computer use is mostly gone on most days. I drove 154 miles today to the hospital and back and had no issues. It was finally enjoyable like driving always has been for me. So, more improvements even though there are still symptoms including some new ones.

[FeralCatman]

I just posted these articles on stress and anxiety and how to cope in symptoms and self care

 

 

[FeralCatman]

UPDATE

 

Good News. Despite the brief increase in symptoms and the incident that sent me to the ER I seem to be crossing a threshold in this, my 14th month off of Seroquel. I am now in the largest block of time in years, ie: since well before I started tapering the Seroquel so probably at least 5 years, with no depression or anxiety. I've been very relaxed and calm. Only 2 out of the last 9 days have been mediocre. There was 1 good day and the rest were normal. I am sleeping consistently 6 or 7 hours a night. The sleep is broken but much better. Yesterday I worked outside on a hot sunny day with moderate physical exertion and so far no consequences other than being a bit tired and sore. I mowed and weed whacked with no mask and it was no big deal. Still having gut issues but much improved. I suspect that gut issues will be lingering for quite awhile especially while I am still reducing the Allegra which will change my gut environment again. I have also managed to reduce my Allegra again by 30mg for a total of 60 mg and so far so good. I am down to 2 - 180mg tablets a day. If I still feel fine by the end of the week then the Allegra reduction won't have caused me any problems which is a huge change from a few months ago. If today is a normal day that will make 4 in a row which is the most I've had since jumping off the Seroquel in August 2021. If by the end of this month I see a consistent big increase in Normal days I will be able to upgrade my recovery from 75% to 80%. 😁😸😸😸😸

[FeralCatman]

UPDATE

 

Woke up at 3 am with mild withdrawal from the Allegra. Symptoms included mild anxiety / increase in cortisol (or histamine I really don't know for sure), some gut distress, and I had to pee constantly. So, I won't be getting off Scott free even 14 months into this. It's odd for a drug like Allegra to do this but not completely unheard of either. Here is my theory as to why this is happening.

 

If you read what histamine does in the human body you realize that it does an awful lot besides make you sneeze. Here is a wikipedia link which discusses it in detail.

 

https://en.wikipedia.org/wiki/Histamine

 

Allegra only works on H1 histamine receptors in the Peripheral Nervous System (PNS) which includes the Autonomic Nervous System (ANS) and does not bind with receptors in the Central Nervous System (CNS). So typically there shouldn't be mood or anxiety symptoms associated with stopping it because it does not directly affect the brain. For most people there doesn't seem to be an issue. However in withdrawal from a drug like Seroquel (or antidepressants, or benzos, etc.) your entire nervous system is hypersensitive for a long time after stopping the drug. So, when I reduce the Allegra it affects things like gut and bladder function. As the change in histamine levels alters gut and urinary functions the brain senses there is a problem and this triggers a cascade of various responses to deal with the issue. In healthy people this response probably goes mostly unnoticed. However, for a person who is still in protracted withdrawal this cascade of responses is probably over blown or dysregulated and exaggerated because everything is still out of balance. So, even though it does not directly affect the brain, it does affect the brain indirectly by causing it to respond to the changes in my gut environment and other body systems and creates withdrawal symptoms due to the exaggerated / dysregulated nature of the response. So, the answer to this is just like with all the other drugs. Take it slow and listen to what my body is telling me.

[FeralCatman]

To add to my previous post here is a post I found on justanswer.com from a person suffering from Diphenhydramine (Benadryl) withdrawal that they were using for insomnia. The doctor gives a good answer as to what is actually happening in the body and estimates 3-6 months post cessation recovery. From Benadryl!! Yikes.

 

https://www.justanswer.com/medical/j962y-long-expect-cholinergic-rebound-withdrawal-last.html

[FeralCatman]

When I was tapering the seroquel I found that it took about 3 weeks for me to recover sufficiently to do another dose reduction. I just looked at my spreadsheet in which I keep with all of my mood, sleep, vitals, etc. I counted the days elapsed since my last Allegra reduction and it took me 20 days (3 weeks) to recover and get over a weeks worth of normal days. That makes me think that 3 weeks is what it takes for my body to adjust to changes in a medication dose. I can't say for sure but I suspect that when it comes time to reduce the paxil and then the tegretol I will find the same pattern when tapering those medications.

[ChessieCat]

4 hours ago, FeralCatman said:

I can't say for sure but I suspect that when it comes time to reduce the paxil and then the tegretol I will find the same pattern when tapering those medications.

 

Please don't become complacent.  Just because you have noticed a similar pattern with Seroquel and Allegra does not mean that a similar thing will happen with Paxil and Tegretol.

 

Some members have noticed that during a taper off one/a single drug that there seems to be certain dose/s that they have more difficulty with.  There does not seem to be any correlations between the different members for the drug being taken or dose.

 

Edited September 7, 2022 by ChessieCat

[FeralCatman]

As I learned in the military complacency kills and it's an idea I have carried forward ever since I was in the military. As a civilian I have worked jobs that were dangerous and have seen firsthand what complacency does. People died as a result of being complacent. I am never complacent in anything that I do. My post was simply an observation that I found to be interesting and something to potentially look for down the road. I am constantly doing trend analysis with everything in my life including withdrawal and recovery so I can better understand what is happening to me and to help with my mental preparedness for future events. I don't do well with just knowing the what I always like to know why which is why I continue to question things and do more research so I can refine my understanding of what is happening. However through this entire process I will continue to do what I have been doing which is to feel my way through it with the understanding that this process and my reactions change with time. I fully understand this whole process is very unpredictable but the more you understand about it the better off you will be and the safer you will be while doing it. So sorry if that post concerned you.

[ChessieCat]

Thank you for clarifying.  I just didn't want you to get "caught up" with the idea that the future will be the same as the past.

 

I'm glad that you are the type of person who will continue to be cautious.

[FeralCatman]

I will. When you make the decision to live alone in the middle of nowhere, if you have any sense at all, you have to build an extra safety factor into everything you do. Distance wise my closest friend is almost 100 miles away and my closest family member is almost 200 miles away. I have a life alert with GPS and a hiking GPS with a beacon which I carry with me so I can at least let someone know there is trouble and that they need to make sure my cats get taken care of if something happens. I worry about them more than myself. There is no local police force and no full time fire department and no ambulance. The closest hospital is half an hour from here which means if I call 911 it will take them half an hour to get to me and another half an hour to get to the hospital. If anything happens help will not get here quickly. I love living here but you definitely can't screw around so I have to be cautious. This is why I am spending so much time learning about what is happening to me so I can safely manage it on my own. I did not expect all of this to happen from getting off of these drugs after a slow taper so it has been a scary learning experience and there have been days that were a bit terrifying but I wouldn't trade my current life for anything as I am largely done with the world of people and need and enjoy the isolation. I am really quite pissed to be going through this and to be so limited as a result. I know eventually this will all pass but still.......🤬

[FeralCatman]

I was looking up muscle pain and found a post that I thought I would re-post here. It is their list of symptoms while recovering. My response to this list is.....Yup.

 

 

[FeralCatman]

UPDATE

 

Now that I have enough data I did some more number crunching to compare things while I was still on Seroquel vs. after I stopped taking it:

 

                                                                     ON SEROQUEL                     OFF SEROQUEL

 

Days with NO Depression                                    30%                                        36%

Days with NO Anxiety                                          30%                                         31%

Days with NO Depression and no Anxiety          25%                                         28%

Days with sleep rated Fair or Good                    44 %                                        44%

                                                                         DIABETES                                  GONE

                                                                         HIGH CHOLESTEROL                GONE

                                                                         GERD                                          GONE

                                                                         HIGH BLOOD PRESSURE          GONE

                                                                         MORBIDLY OBESE       SLIGHTLY CHUBBY

                                                                         HYPOTHYROIDISM              IMPROVED

                          

Looking at these statistics you can see an improvement in depression and anxiety now that I am off of the medication and my sleep quality is the same. So, Seroquel was actually a 'Do Nothing BOZO'. All it was really doing was making me physically sick and it made my depression and anxiety worse. In the end it didn't even help me sleep. Totally not worth the metabolic syndrome, high blood pressure, and diabetes that they tell you are perfectly manageable necessary evils for those with mental illness. Keep in mind that the numbers OFF SEROQUEL are while I am still dealing with withdrawal symptoms, gut damage, a restricted diet, tapering my Allegra which makes me sick every time I drop the dose, an immune deficiency that due to COVID keeps me isolated, and I also deal with Ankylosing Spondylitis, Forestiers Disease, Hypothyroidism, a raccoon that won't leave my suet feeders alone, a world that's lost its collective mind, and just life in general. Even with all that I am dealing with I am still doing better without the drug and I expect these numbers will slowly improve as time goes by. Thanks for the 'Help' psychiatry. You guys really nailed it 🤨

[morgana]

hi @FeralCatman, sounds like your doing well....as i have problems with heat regulation and histamine issues i follow a healthy Keto diet with loads of raw veggies and also following a woman on YouTube named Gut Feelings..she talks about Allergies and says that the problems with this is the liver needs cleansing (these drugs basically kill the liver, especially over the long term) which she gives advice on what to do...for example i drink a large glass of celery juice in the morning, Dandelion Tea, than drink Stinging Nettle throughout the day and lemon tea at night, so far...i feel the best i have in years....these are all teas that help the liver...and Stinging Nettle helps with Allergies and eating onions are all so a natural anti histamine....check her out on You Tube and let us know if you find her helpful....cheers Morgana 

[FeralCatman]

@morgana Thank you. I will definitely check out the YouTube page and look into it. I am just starting to tolerate raw veggies again and am still on a limited diet but my guts seem to be improving. I also only had 3.5 days of much milder disruption after the Allegra reduction this time so that has improved as well. I take this to mean my histamine sensitivity is getting better slowly. I hope so. I'm taking it much slower this time. As I am able to add in other foods I will definitely give some of what you suggest a try as anything you can do to be and live healthier is a great thing. I will post when I am able to try one of the suggestions. 😉✌️😺😺😺😺

[FeralCatman]

I am having a flare up of my ankylosing spondylitis in addition to a back injury causing sciatica symptoms in my butt and down the back of both legs. It's pretty painful but so far all I have done is use ice, heat, stretching, rest, and diclofenac topical gel on my lumbar spine and tailbone which I normally use when the plantar faciitis symptoms from the AS flare up and sometimes on the enthesis points in my elbows. The first day I couldn't even stand up straight. It's been a few days and am having some improvement. I went to urgent care and they think this will resolve just fine with self care. They offered drugs but I refused. Previously I had taken Salsalate 750mg twice daily for the AS inflammation but I am trying to hold off. The Drugs.com interaction checker shows only a minor possible reaction with the Metoprolol where it could impact blood pressure.

 

Any thoughts or experience on using the Salsalate for inflammation. I ask for both my current situation and for future AS flare ups. It's an old drug and is a cousin to aspirin but stronger and a bit easier on the guts. I can't take ibuprofen, aleve, etc due to previous reactions.

[FeralCatman]

I think I answered my own question. I finally found the thread on painkillers. Since salsalate is similar to aspirin it looks like it should be fine. I've also taken it before with no issues other than stomach upset if the dose is too high. If I need to I'll just start with a small amount and see what happens. I still welcome any comments if anybody has any. Always open to hear what other people's experiences have been.

 

 

[Heath]

I am familiar with your pain .
I use Celebrex for low back pain for many years and I have cut my Celebrex dose in half by using turmeric. 
Currently I am taking 1k mg of turmeric daily. My goal is to take turmeric and no Celebrex eventually. I have experienced the turmeric stopping pain in hip with sciatic pain down leg to side of foot within 30 minutes. It works. 
 

but you know different brands of supplements may work for you and not me. I tried about 3 different brand turmerics. And I found a good one. A lot of research and info on turmeric and omega 3 for inflammation. 
 

also I lay on back on flat ice pack  with 2 or 3 pillows under knees. 
 

use tens unit. You can buy one cheap off Amazon.
Chiropractor . Acupuncture 

stretch the hamstrings as much as you can. 
 

a friend of mine said he needed to have back surgery and dr told him to take 3000 mg turmeric daily so he has been doing that for around 10 years and no surgery. 
 

https://www.qunol.com/products/qunol-turmeric-extra-strength-superior-absorption-1000mg-60-servings-120-count?utm_source=google&utm_medium=paid&utm_campaign=16449142444&utm_content=139678619451&utm_term=&gadid=585360575470&gclid=EAIaIQobChMI9NbhkOWU-gIVQ9qGCh2ACAfdEAQYASABEgIqhvD_BwE

 

[Heath]

@FeralCatman

oh and avoid sugar. Sugar does for inflammation what gasoline does for a fire. 

[FeralCatman]

So I have discovered something that many of you probably already know. I just didn't know how to describe it.

 

Since I got off the drug and went through 'The Kick' and got really sick this past spring it seems like I am wearing an entirely different body now. All the work I did learning my limits and tolerances etc. seems to have gone mostly out the window because nothing seems to be the same as it was before this spring. I am having to relearn everything it seems like. Wondering if and how people relate to this.

 

Also just discovered that with my newfound sensitivities to everything having a flare up of my Ankylosing Spondylitis / Sciatic pain (Which may actually be the result of having to run on a treadmill for my exercise stress test) really sucks because I can't do most of the things I used to do to deal with it. I am also now dealing with stomach flu and it's the same thing. I can't go get something like Onadestron or Compazine for the nausea and not really willing to try anything new right now so just kind of have to suck it up and drink plenty of water spritzed with some salt until I can eat again. On one hand it sure is toughening me up having to do things the truly old fashioned way but boy does it suck. Didn't realize how spoiled I had become with all of our 'quick fixes'. So hard to know what is safe to do as things crop up because it seems like the only way to find out where I am at is to find out the hard way.

[FeralCatman]

On 9/14/2022 at 3:42 PM, Heath said:

@FeralCatman

oh and avoid sugar. Sugar does for inflammation what gasoline does for a fire. 

@Heath One thing I have heard about that I have not tried yet is Collagen supplementation. My father and my PCP both have said they know people who swear by it. I have not tried it yet but plan to at some point.

[FeralCatman]

As time goes by I am noticing that this flare up feels more like stiff cramped up muscles in my butt and legs rather than the pain I am accustomed to with the Ankylosing Spondylitis flare ups. This does not feel the same. I keep getting feelings like my calves are going to cramp up and I have to sit down. My hamstrings feel very tight and when I walk it feels like they are pulling on my tailbone. I am beginning to wonder if this may not be a sciatica type issue and that this may be another part of the protracted withdrawal / recovery process and that this is another one of my brains sweep and clear missions that causes so many weird symptoms. I see my PCP next Wednesday. I had lumbar / pelvis xrays done and there are no changes since the last time a couple of years ago and no indication of any damage or structural abnormality that could be causing this. Basically the Xrays were normal for my age. My last blood work a few weeks ago was all normal. Diet is the best its ever been except for the last couple of days with the stomach bug. I am going to get a referral to my physical therapist again to try and nail down the root cause and may get an MRI just to be sure this isn't something new. I doubt it is. Any thoughts from anyone as to the possibility that this could simply be another WD related problem that is messing with muscle function in my legs? I have read on these forums of others who have had the same issues. It's a real bummer because the most important thing to me in my life is my independence and autonomy which greatly hampered at the moment. Any input would be greatly appreciated.

[Heath]

@FeralCatman

About 6 months ago or so I don’t remember exactly. But during my slow taper. I had the painful achy legs , feet . Stiff after getting up from sitting. Felt like sciatica . 
I said the same thing “this feels like my normal aches but not really something is different “ 

 

I stretched hamstrings every day for a week and the pain went away. 
 

was it withdrawals symptoms? Maybe - probably but I don’t know. 
 

One symptom I do know was from wd is getting up and walking around like a 100 year old man. I’ve had that but as you said this was a little different. 

[Heath]

I don’t stretch hamstrings standing. Do it laying on back. 

[FeralCatman]

@Heath Thank you for the input. I totally relate to the 100 year old man feeling on some days.

 

Trying to get as much information and as broad a perspective as possible. I have a friend who has back / sciatica issues and have explained things in detail to her and she has all of the same symptoms. However, her x-rays show a clear cause. Mine do not. So, once again I am going through the process of exclusion to rule out the more serious causes. My best guess so far is 'Piriformis Syndrome' which is when the Piriformis Muscle is inflamed or injured and it compresses the sciatic nerve which runs under and through it and causes these symptoms. Symptom wise it is the best fit and it would explain the bilateral nature of the symptoms if I injured both sides. It usually resolves on its own with rest and stretching within a few weeks. It could have been caused by the treadmill or something else. It could be WD related due to muscle tension and nerve dysregulation. Just prior to symptom onset due to ongoing improvements in how I have been feeling I bought my season pass for the winter ski season and this has me a bit worried. Skiing is one of my reasons for living and is a big part of how I rejuvenate mind and spirit. Hopefully this will pass before then and is just another bump in the road.

[Heath]

@FeralCatman

Im with you Mine is also skiing but the summertime kind. And as you oh the great feelings !  I still do it with the low back issue. 
Yep sometimes I get that feeling “I guess I won’t be able to ski anymore “and somehow when the season comes I manage to do it again 😀

[FeralCatman]

@Heath I said the same thing when I was diagnosed with Ankylosing Spondylitis and Forestiers Disease. That was 6 years ago and it hasn't stopped me yet. Right now just standing up straight is painful. Walking to the mailbox is an adventure. However, years ago I also had to wear a metal brace on my legs due to swelling and pain in my knees and had a hard time with stairs and I got through that so unless this is something new, which it probably is not, I have to try to make the assumption that I will get past this as well. Still scary for me though. I'm sure you can relate. Thanks for the support. I am used to dealing with things on my own and reaching out is hard. 😉✌️😺😺😺😺

[FeralCatman]

I just posted this about the flawed chemical imbalance theory.

 

 

[itiscomplicated]

About hamstrings and stretching - personally. I've had low back pain for years, and a slew of tendon problems over the years, including a ruptured achilles.

 

One PT thought that the achilles pain and rupture was from tight hamstrings, and they were very, very tight.

 

About ten months ago, I realized there were muscles in my body so tense, I'd always thought they were bone. Particularly around my hips, tailbone, and lower trunk overall. I realized my tailbone area was often numb. As a kid, I'd been taught to suck in my stomach, and never learned to breathe properly. Plus, was almost always holding my breath from anxiety.

 

My prescriptions for psych meds, probably benzos in particular, I'm sure made it all worse and made me prone to injury.

 

So in addition to stretching, I've found that taking time to focus on breathing and activating those muscle areas while at rest to be helpful. I also use a percussion maassager when I need to, at low intensity.

[FeralCatman]

@itiscomplicatedIt's funny you mentioned sucking in the gut because guess what they teach you in the military. Gut in, chest out, and don't lock your knees or you'll pass out and not a word about breathing properly. The area around my tailbone is always really tight and if I don't stretch my hamstring they tighten up really easy. Once I eliminate anything new that could be dangerous and talk to my physical therapist I will ask her about using a massager at home. I am also going to ask her for a good recommendation for a pillow for someone that has neck pain and is a side sleeper. Once my acupuncturist is back off of medical leave I will definitely start going back to him again now that I can safely drive the distance again. Thanks so much for the input.

[FeralCatman]

Hey everyone. So this recent gut illness coupled with the back injury of currently unknown cause has really knocked me on my behind. With the back injury hobbling me I can't turn to any of the things that usually help me through times like this. (walking / hiking, working on my property). Reading and TV just don't do it for me since I gain energy and calm from being active and out in nature. If I were only dealing with the one thing I would probably be okay but it is the combination of things that finally hit me that is really tough (AS flare which is actually calming down but still there, gut illness still ongoing but improved, back injury and being hobbled, worries about the cause of both to which I still have no concrete answers, last night I was up at 3 am with awful anxiety and haven't been back to bed yet, all the unknowns with WD, all the unknowns with the associated dysautonomia, etc.) It's all been piling up for awhile but it's now really all overwhelming me. Any words of advice, wisdom, and encouragement would be greatly appreciated.

[FeralCatman]

I just talked to my dad and he's looked at some of the charts I keep and he thinks that my last Allegra reduction was a tipping point and it may have been the cause of this recent gut illness. I tend to agree since it is basically the same thing that happened earlier this year but not as severe so far. Even with as many improvements as I have seen my system is still apparently extremely sensitive to any changes at all. I'm going to hold off on making any kind of medication change at all until the spring and give my body a long period of stability and then try again. Not sure if this is really the issue but definitely not willing to find out the hard way again right now.

[FeralCatman]

UPDATE

 

Feeling a bit better this morning. I was looking up an ortho doc I saw years ago who was really good to make an appointment for this sciatic pain. He has retired but the clinic he worked at has a dedicated orthopedic walk in clinic so I am going to head down there today. No appointment needed and they have on site imaging. It's about an hour a way so it's good that I can drive again. It will be nice to have some answers today so I can figure out how to get to work on this issue.

 

I've also had time to think things through. It is obvious from this Allegra reduction followed by these reactions that the histamine issues are still a big deal even with the improvements. 5 weeks apart was too close together even though I saw recovery after about 3 weeks. Even though it set me back a bit and short term it increased the misery factor it was a good test of where I am at and a good lesson learned. I am happier now that the Allegra dose is down to just the 2 pills per day which is normal for some people and no more cutting pills. My PCP and ENT specialist are aware of all of these problems and are backing me up on keeping the higher dose. This is good because if I have to deal with a hospital they like to reinvent the wheel and argue about meds so this way I have backup and they can't mess with me on this one. As I said in my previous post now is a time for a long hold to give my body time to recover and heal up and get stronger. It's going to take a bit to get my diet back up to where it was after this incident. So, now it's back to the plan I posted months ago that has Altostrata's Stamp of Approval. Here is a link to the post.

 

I don't know when I will be able to start in on the Paxil but that will be next unless there is a medical reason that pops up that requires me to change things. I am printing this out and posting it on the wall in my office so I don't get off track. When I get back to the point where I am eating a full diet, sleeping correctly, having consistent days where I am fully functional, have had a chance to test out things for pain and inflammation, had a chance to do some feral cat rescue again, and am having more normal days than anything else, and can exercise daily without issue I will start considering cutting back slowly on the Paxil. I definitely need a long break.

 

Thank you to everyone on this site for everything you have posted and for the input on my thread. It's all been an invaluable part of helping me to get through this and will continue to be that through the rest of this journey. I know that I am not very interactive or at least not as much as some but believe me my heart is always with you all and you are all on my Kitty Prayer list on my refrigerator 😉✌️😺😺😺😺