FeralCatman: recovering from Seroquel

[FeralCatman]

With respect to MCAS and Immunology I am proceeding very very cautiously to any medications they may want to try but it is definitely a path worth pursuing given my long term history of symptoms including pre medication symptoms. Trying very hard to not add insult to injury.

[ChessieCat]

18 hours ago, FeralCatman said:

I have seen the term 'Kindling' but need a link which describes that so I can understand it.

 

I did a search for posts by Shep for kindling (link below).  Basically it is trauma to the nervous system (sensitisation) which may be caused by going on and off psychiatric drugs, taking too high a dose, going up and down in doses, adding or switching drugs, reducing too quickly and experiencing bad withdrawal symptoms.  The effect of psychiatric drugs is cumulative and what you might have worked for you previously might not work the next time you try the same thing.

 

https://www.survivingantidepressants.org/search/?&q=kindling&author=shep&search_and_or=and

 

  

On 7/26/2012 at 11:38 AM, Altostrata said:

Kindling is another name for hypersensitive reactions to neurologically active substances.

 

Yes, people who have withdrawn from antidepressants experience this. We have many, many discussions about post-withdrawal hyper-reactivity.

 

This is another reason to care for the nervous system with a slow taper.

 

On 8/6/2011 at 6:43 AM, Altostrata said:

If you've had withdrawal symptoms or adverse reactions before, you are likely to have them again. Be careful, because an injury to the nervous system is like any other injury -- it can take time to heal. Repeated nervous system injuries cause more and more intense symptoms -- a phenomenon called "kindling."

 

[FeralCatman]

Thank you Chessie Cat. That's very helpful. Still working on figuring out how to navigate this site. For the first time in my 50+ years I am finally building a connected holistic big picture view of everything I am dealing with. The Website 'Beyond Meds' has been very helpful in building this picture as it helped me to connect many previously disconnected dots. My next post will be a summary of it all. Drug withdrawal is only part of it as I am finding out. Basically I am kind of a mess right now. I am glad I have decided not to change much right now so as not to make things worse. I am actually having a very hard time recently with these sensitivities and they seem to be getting worse. I am becoming nervous about too many things as I don't know what will trigger the next reaction which of course is raising my stress and anxiety levels which probably is not helping the sensitivities and it is starting to snowball. Due to the sensitivities and a bad allergy season in full swing I am unable to get out and do what comforts me which is to go hike and be out in nature. I had a reaction last night and don't know what caused it. The benadryl didn't really help this time so it's a bit scary for me which is hard for me to admit. I did get the blood work back from my trip to the ER a couple of nights ago and my Tryptase levels were elevated above baseline by 12% at 3-4 hours after the onset. Since levels peak 1-2 hours after onset they were already decreasing and had been higher so even though they are still in the normal range this is a possible indicator of a MAST cell reaction hence why I have been talking about MCAS. I have had to do some pretty scary things in my life but this definitely takes the cake because it is so unpredictable. I haven't been able to coherently post very much about it because of the lack of a big picture perspective on what is happening and a lack of understanding about the protracted withdrawal process but now that I have done a ton of reading and have that I will try to start because I definitely can't do this one alone which is typically what I have always done. My best friend of 20 years recently compared me to Sheldon on 'The Big Bang Theory' so social interaction can be very draining on me even online. I've basically been a loner since birth so reaching out consistently is very hard for me. I have also had repeated trauma over the years in the hands of people who I was supposed to be able to trust, including as a child, so that has just reinforced the loner mentality. I won't post the details here because I know it is triggering for a lot of people and this is not the appropriate place for that. I will say much of the trauma and abuse occurred in VA Hospitals and civilian Psychiatric Wards. The last time I was in one of those places they literally almost killed me and I consider myself lucky to be alive. My brother is the same way as we basically had to raise ourselves. So, my ability to trust is hanging by a thread at this point. When I did my original write up I had hoped that once off the Seroquel there would just be a slow steady recovery but that does not seem to be the case since things took a turn for the worse over the last few weeks. This is an incredibly steep learning curve. Much steeper than learning to operate and maintain nuclear reactors. I am learning it's not as simple as just wait it out and gut it out and it will eventually get better. There are multiple things I will need to start doing to really heal from this. It's very stressful in and of itself and as much as I want to I just can't do this alone any longer. I will need help which is why I am so glad I found this site.

[FeralCatman]

I am going to write up the holistic summary I spoke about and when it is done I will post it. However, before I do that I am going to finally stop being a stubborn loner and take the advice of Altostrata and post daily logs for awhile so I can have some input on what may be going on. Also, here is my full set of official diagnosis.

 

Bipolar 1

PTSD

Generalized Anxiety Disorder

Diabetes type 2 (Non Medication Dependant Now)

Hypothyroidism

High Cholesterol

Hypogammaglobulanemia (Including IGG Subclass Deficiency of IGG 1 & 3)

IGA deficiency

Forestiers Disease

Ankylosing Spondylitis

Seasonal Allergies

REM Behavior Disorder

Possible Mast Cell Activation Syndrome (MCAS) under evaluation

 

This is my log from yesterday.

 

0430 - Woke up from an adrenaline surge. The worst of the anxiety lasted about 2 hours and then started to settle down. Slept 6-7 hours broken. Tried 12.5mg benadryl but was not much help this time. Stayed in bed and did vagus nerve breathing exercises and listened to music to try and calm things down. Waking symptoms - Back pain lower right side (Normal AS pain), Anxiety, Shaky, Very Hot, Mild blurry vision (comes and goes)

 

0630 Out of bed. 16 oz glass of water (caused cramping and discomfort), Anxiety reducing.

                   Took 100mcg synthroid.

0645 - 0730 Cleaned litter boxes, vacuumed the house, medicated cats, changed water bowls, fed cats

0730           20mg Nexium

0800 2 cups decaf coffee with light cream and stevia - No reactions

0900 Took remaining Pills

                   200mg carbamazepine

                   180 mg allegra

                   1000 mg fish oil

                   1000 mg vitamin C

                    Nasal Sprays For Allergies (Azelastine, Ipratropium Bromide)

0915 Normal Bowel Movement

0930 Breakfast - 2 scrambled eggs, Turkey Sausage, Grapes, Small apple, Water

                            (Some short term mild cramping and discomfort)

1000 - 1600 Got dressed, took garbage to dump, went to post office, went to grocery store. Wore an N95 Mask the entire time due to seasonal allergies. Didn't have to do this until it warmed up and the snow melted. Trying to minimize exacerbation of reactions. Symptoms throughout the day included small adrenaline surges, waxing and waning axiety, irritability, a bit of anxiety and fear when leaving the house due to fear of making reactions worse by environmental exposure, transient blurry vision, transient pain in stomach and intestines, transient lymph node pain in my arm pits (I've had this one for years).

1600 - 1700 3 mile walk, got some odd feeling cramps and twitching in my left thigh that was new and triggered anxiety. Overall though anxiety is greatly reduced.

1800 Nightly Pills and 1 glass low sugar gatorade for the cramps

                      Carbamazepine 200mg

                      Crestor 5 mg

                      Allegra 180 mg

                      Paxil 10 mg

                      Vitamin D3 2000IU

                      Multivitamin

                      Fish Oil 2000mg

                      Allergy Nasal Sprays (Azelastine, Ipratropium Bromide, Triamcinolone)

1800-1830  Cleaned litter boxes, Changed water bowls, vacummed, medicated cats, fed cats

1845 Supper - Boiled haddock and vegetables and sweet potato, water

1930 Desert - 1 cup frozen blueberries with stevia and half and half

2100 Anxiety ramping up again, muscle twitching, facial muscle twitching, short adrenaline surges, urges to urinate increasing

~2200 Fell asleep

                     

 

[FeralCatman]

Forgot to add that I take a probiotic as well in the morning

[Pollyjay]

Thinking about you. How are you doing today, FeralCatMan?

[FeralCatman]

18 hours ago, Pollyjay said:

Thinking about you. How are you doing today, FeralCatMan?

@Pollyjay Yesterday was a really rough day. Didn't sleep much. Had bad anxiety in the morning and several bouts of bad adrenaline surges at night. Had to use the benadryl again. My body is really in an uproar all of a sudden. So sorry to get back so late but yesterday was a long busy day and I didn't have the energy to log on last night.

 

Thank you so much for checking in and thinking of me. It's really appreciated. 😉😉

[FeralCatman]

Thursdays log 04/21/2022

 

0200 - Woke up from with severe adrenaline surge and muscle twitching. Panicked and took 25 mg of Benadryl. Didn’t help like it has been. The worst of the anxiety lasted about 1 hour and then started to settle down. Slept a bit until 0445 then got on phone and started reading on Surviving Antidepressants and Beyond Meds. Also did vagus nerve breathing exercises and listened to music to try and calm things down. Waking symptoms - Back pain lower right side (Normal AS pain), Anxiety, Shaky, Very Hot, Mild blurry vision (comes and goes)

700 Out of bed. 16 oz glass of water (caused cramping and discomfort), Anxiety reducing.

                   Took 100mcg synthroid.

0720 - 0800 Cleaned litter boxes, vacuumed the house, medicated cats, changed water bowls, fed cats

0800   20mg Nexium

0830   Logged on to reply to chessie cat

0900 Took remaining Pills

                   200mg carbamazepine

                   180 mg allegra

                   1000 mg fish oil

                   1000 mg vitamin C

                    Nasal Sprays For Allergies (Azelastine, Ipratropium Bromide)

                    Pro Biotic

0930 Normal Bowel Movement

0945 Breakfast - 2 scrambled eggs with asparagus, Small apple, Water

                           (Some short term mild cramping and discomfort)

1015 logged on to post yesterdays log

1106 Anxiety is ramping up again, Feel twitching in my face again, house is 69F but I am cold again and had to turn up the heat to 72

1430 Phone appointment with therapist

1430 – 1800 Stayed inside today to give my body the best chance of some rest and recovery. Had a cup of unsweetened applesauce at 1600. Symptoms throughout the day included small adrenaline surges, waxing and waning anxiety, irritability, transient blurry vision, transient pain in stomach and intestines, sobbing fits. Seems to get better as the day goes by again. Ability to cope waxes and wanes with the anxiety and adrenaline surges.

1730 Anxiety is ramping back up again. Not sure if this is a reaction or just anxiety. Vitals are good. BP is up a bit but okay.

1800 Getting worse. Took 50mg Benadryl to see if it helps. Used some of my Boost Oxygen bottle to see if it helps.

1845 Nightly Pills. Benadryl is helping

 

                      Carbamazepine 200mg

 

                      Crestor 5 mg

 

                      Allegra 180 mg

 

                      Paxil 10 mg

 

                      Vitamin D3 2000IU

 

                      Multivitamin

 

                      Fish Oil 2000mg

 

                      Allergy Nasal Sprays (Azelastine, Ipratropium Bromide, Triamcinolone)

 

1800-1830  Cleaned litter boxes, Changed water bowls, vacuumed, medicated cats, fed cats

1900 Supper - Boiled chicken and broccoli and potato, water. Blueberries, cream, and stevia.

2100 Bad episode of adrenaline spike and anxiety that started in my guts. Going to see nutritionist tomorrow. Benadryl helped again.

2230 Bed time

 

 

                     

[Pollyjay]

3 hours ago, FeralCatman said:

@Pollyjay Yesterday was a really rough day. Didn't sleep much. Had bad anxiety in the morning and several bouts of bad adrenaline surges at night. Had to use the benadryl again. My body is really in an uproar all of a sudden. So sorry to get back so late but yesterday was a long busy day and I didn't have the energy to log on last night.

 

Thank you so much for checking in and thinking of me. It's really appreciated. 😉😉

 

Please don't feel the need to apologize FeralCatMan! You have enough on your plate to deal with. I'm struggling with the anxiety also and sometimes it's all we can do to just breathe our way through the day. 

 

I hope your appointment with the nutritionist went well. It sounds like you had a very full day and that just ramps things up even more. You even vacuumed the house!

 

I hope today you can rest and bring the adrenaline down a bit. Take it easy and just do small things. Have one thing   you can check off as "done" call it quits and feel good about yourself.

 

My thing today is : Take a Shower  I have no idea why getting in the shower always seems like an insurmountable task! Moeso than doing the farm chores. It's nuts. 

Yesterday was very hot - at least for me-  I found the anxiety getting worse and worse the more I tried to work out there. All I got done was to fill two large planters with soil. Had to keep coming in to lay on the bed and try to get the anxiety down. It took 4 hours to fill two pots!  But they're done! Maybe I'll get the flower seeds planted in there today.

 

Anyway, I'm rooting for you and praying that you'll have some relief from all the symptoms you're having, especially the anxiety!

 

Scratches and kisses to the precious kitties!

 

Polly

 

 

 

 

 

[FeralCatman]

@PollyJay Just wanted to let you know I will have to be off line for awhile. I had to call my dad and he is staying with me right now. Lots of crazy things happening to my body right now and had to go to the ER twice in the last 3 days. Not sure what is going on but BP has been all over the place, Body temp control is whacked and I shiver in the house at 69F, no sleep in over 2 days, etc. I've been very careful since getting off the seroquel about caring for my nervous system and not jerking it around too much so this may be something else. I am in good hands with my dad and he is staying for the duration. I will get in touch when things settle out and I get some answers.

 

Please take care and thank you for reaching out. I really appreciate it.

[tsranga]

On 4/23/2022 at 3:57 AM, FeralCatman said:

Thursdays log 04/21/2022

 

0200 - Woke up from with severe adrenaline surge and muscle twitching. Panicked and took 25 mg of Benadryl. Didn’t help like it has been. The worst of the anxiety lasted about 1 hour and then started to settle down. Slept a bit until 0445 then got on phone and started reading on Surviving Antidepressants and Beyond Meds. Also did vagus nerve breathing exercises and listened to music to try and calm things down. Waking symptoms - Back pain lower right side (Normal AS pain), Anxiety, Shaky, Very Hot, Mild blurry vision (comes and goes)

700 Out of bed. 16 oz glass of water (caused cramping and discomfort), Anxiety reducing.

                   Took 100mcg synthroid.

0720 - 0800 Cleaned litter boxes, vacuumed the house, medicated cats, changed water bowls, fed cats

0800   20mg Nexium

0830   Logged on to reply to chessie cat

0900 Took remaining Pills

                   200mg carbamazepine

                   180 mg allegra

                   1000 mg fish oil

                   1000 mg vitamin C

                    Nasal Sprays For Allergies (Azelastine, Ipratropium Bromide)

                    Pro Biotic

0930 Normal Bowel Movement

0945 Breakfast - 2 scrambled eggs with asparagus, Small apple, Water

                           (Some short term mild cramping and discomfort)

1015 logged on to post yesterdays log

1106 Anxiety is ramping up again, Feel twitching in my face again, house is 69F but I am cold again and had to turn up the heat to 72

1430 Phone appointment with therapist

1430 – 1800 Stayed inside today to give my body the best chance of some rest and recovery. Had a cup of unsweetened applesauce at 1600. Symptoms throughout the day included small adrenaline surges, waxing and waning anxiety, irritability, transient blurry vision, transient pain in stomach and intestines, sobbing fits. Seems to get better as the day goes by again. Ability to cope waxes and wanes with the anxiety and adrenaline surges.

1730 Anxiety is ramping back up again. Not sure if this is a reaction or just anxiety. Vitals are good. BP is up a bit but okay.

1800 Getting worse. Took 50mg Benadryl to see if it helps. Used some of my Boost Oxygen bottle to see if it helps.

1845 Nightly Pills. Benadryl is helping

 

                      Carbamazepine 200mg

 

                      Crestor 5 mg

 

                      Allegra 180 mg

 

                      Paxil 10 mg

 

                      Vitamin D3 2000IU

 

                      Multivitamin

 

                      Fish Oil 2000mg

 

                      Allergy Nasal Sprays (Azelastine, Ipratropium Bromide, Triamcinolone)

 

1800-1830  Cleaned litter boxes, Changed water bowls, vacuumed, medicated cats, fed cats

1900 Supper - Boiled chicken and broccoli and potato, water. Blueberries, cream, and stevia.

2100 Bad episode of adrenaline spike and anxiety that started in my guts. Going to see nutritionist tomorrow. Benadryl helped again.

2230 Bed time

 

 

                     

Taking antihistamines may have adverse reactions..

 

 

 

[tsranga]

4 hours ago, FeralCatman said:

@PollyJay Just wanted to let you know I will have to be off line for awhile. I had to call my dad and he is staying with me right now. Lots of crazy things happening to my body right now and had to go to the ER twice in the last 3 days. Not sure what is going on but BP has been all over the place, Body temp control is whacked and I shiver in the house at 69F, no sleep in over 2 days, etc. I've been very careful since getting off the seroquel about caring for my nervous system and not jerking it around too much so this may be something else. I am in good hands with my dad and he is staying for the duration. I will get in touch when things settle out and I get some answers.

 

Please take care and thank you for reaching out. I really appreciate it.

 

I just wanted to say that taking antihistamines may cause adverse reactions..  

 

 

[Pollyjay]

On 4/24/2022 at 3:32 PM, FeralCatman said:

@PollyJay Just wanted to let you know I will have to be off line for awhile. I had to call my dad and he is staying with me right now. Lots of crazy things happening to my body right now and had to go to the ER twice in the last 3 days. Not sure what is going on but BP has been all over the place, Body temp control is whacked and I shiver in the house at 69F, no sleep in over 2 days, etc. I've been very careful since getting off the seroquel about caring for my nervous system and not jerking it around too much so this may be something else. I am in good hands with my dad and he is staying for the duration. I will get in touch when things settle out and I get some answers.

 

Please take care and thank you for reaching out. I really appreciate it.

 

Thinking of you, and praying for you, FeralCatMan!!!!

 

I'm so glad you have your dad there for help and support. Praying for him too. I'm sure he's very worried about you. 

 

Hugs to you both!

[FeralCatman]

Well, that was scary. My BP spiked to 175/110 which is what led to the ER visits. Here is the big picture holistic view.

 

My dad just left. I have almost completely recovered. On Tuesday my PCP prescribed a very low dose of Metoprolol ER Succinate which is a beta blocker. Things calmed down within an hour and I was able to get  several hours of broken sleep. Yesterday was still shaky but last night I passed out on the couch and slept pretty well until about 0330 and everything is starting to resolve very quickly. I will have to taper off of it when it is time to stop but I can deal with that as it is certainly less aggressive than Seroquel. My food sensitivities are also already lessening and my guts are moving again.

 

There is definitely post Seroquel CNS Hypersensitivity involved.

 

There is also a hyper-immune response going on as well as I have several lymph nodes that are swollen and a few CBC values are off. This may be the pre-existing conditon that led me to be medicated in the first place since I had symptoms like this, albeit not quite as severe, prior to ever being on psychiatric medications while in the Military. Exposure to toxins combined with a high stress environment may have been the initial trigger while in the Military but it will be difficult to say for sure. Long term exposure to Seroquel and the other psych meds most likely made it much worse. This is a theory but at this point I would be willing to put money on it.

 

Right now both conditions seem to be feeding on each other and seem to be magnifying each others responses to triggers.

 

My dad helped me to identify the trigger for this and for my last episode earlier this year. It was environmental not medication triggered. I can easily avoid that trigger but will still have to be careful. I am sticking to a very strict diet for now until I know more.

 

Since the VA has once again dropped the ball my civilian ENT doctor is getting me into the Mast Cell Disorders clinic at Brigham and Womens Hospital in Boston ASAP. He let me know that in no way should I decrease my Allegra or tinker with the dose in any way as these reactions are quite risky and reducing the dose will most likely cause another episode so I am going to have to walk on eggshells around myself for awhile. 😷😿😿😿😿

 

I know this is not entirely tapering or withdrawal related however there may be others who are having post cessation issues that may have a root cause beyond withdrawal so I though posting this could be helpful to anyone else who may have similar issues.

[FeralCatman]

Doing much better now. Everything is calming down. Other than the early waking cortisol burst at 3-4 am I am getting enough sleep. Today was the 4th mostly normal day in a row.  Still a bit fatigued but overall pretty good. Anxiety has shifted into the background when it is present and most of the time now it is not there. Mood is pretty much back to normal.

 

The low histamine diet I am on seems to be very helpful. Earlier on Altostrata mentioned that the histamine intolerance symptoms may be related to gut dysbiosis. I have been looking into it and that may be a big part of the issue here since almost all of my recent symptoms started between my sternum and my tailbone with pain in various portions of my guts. I discussed this with my PCP and my nutritionist and my psych provider and they all agree it could be at least part of the problem. My PCP has been reading studies on gut health and the microbiome and the importance of gut health on overall physical and mental health. So has my psych provider. If MCAS comes up negative, which I actually hope it does for obvious reasons, then this could be a gut generated histamine intolerance that just happens to be very nasty right now in combination with allergy season. Trying to come down off the antihistamines too fast may have precipitated the gut issues because Allegra binds heavily with H-1 receptors in the gut and I may have opened up those receptors too quickly for my body to adapt. Seroquel also binds with those receptors so years of use may have left my guts more sensitive to changes like stopping the Allegra. Even if my brain and nervous system are healing up my guts may still be very dependent on having an antihistamine on board since my digestive system has been trained to deal with the world through a Seroquel lens. Upset the guts and the microbiome and then that back feeds into the ANS and the Feral Catman gets suddenly very miserable. That portion of the equation makes this recent setback also a Seroquel withdrawal issue though maybe indirectly. Perhaps this is what is teaming up with a still sensitive ANS to have made me exceptionally miserable for a bit. So hard to know. My nutritionist sent me recipes for homemade electrolyte drinks and I am making one with cranberry and apple juice with are both low histamine / antihistamine. I tried it this morning and it settled my guts right down almost immediately. I was pretty shocked truth be told but grateful at the same time. I am still in the process of getting tested for MCAS and don't have any of the results back yet. As I mentioned earlier it seems that the trigger for this recent wave of pretty severe symptoms was environmental however as I think more upon it there were actually multiple triggers stacked on top of each other including stress triggers. The first one being a frozen septic line in my yard right before this all started winding up. All things I used to do and deal with fine but now I apparently have to be more careful with pretty much everything. My stress tolerances are still very very low. So I have scaled back activities for now and take long breaks and listen even more closely to what my body is telling me to do. I am working with my acupuncturist to settle my guts and to strengthen vagus nerve tone and parasympathetic response. Deep breathing exercises seem to be working better and more quickly now that I am practicing and using them consistently. Any anxiety over the last few days I have been able to quell with a few slow deep breaths and forcing my body to relax. I haven't quite figured it all out yet but I am making progress along the learning curve. Once I figure out all of my current limits I can then figure out how to slowly expand them again over time. In the mean time I am trying to enjoy these relatively quiet days. Despite this recent setback I still seem to be healing. One interesting thing is that now that things are settling down my blood sugars seem to be more stable and the spikes are lower. I am getting more and more readings between 90 - 110 for longer stretches. Some of it may be the diet but I like to think some of this is me healing up.

 

That's it for now. As part of limiting activites I am limiting TV, Internet Use, News Checking, etc. to keep stress levels as low as possible. I've replaced it with music most of the time. I will check back in when all of my testing is done and I have the results and an MCAS confirm or deny.

 

Before I sign off I want to say thank you again to Altostrata and to everyone on this web site who has shared their experiences. Even though I am not all that interactive I do read a lot and learn from it. With this recent setback I would have been very lost without this site and all of the information that has been shared. I have been reading symptoms and self care as I have felt up to it and have found a lot of useful information. My PCP and psych provider are also cruising this web site trying to learn what they can to help me with all of this. They are definitely on board with and sympathetic to what people here are having to say about these medications and their effects and to the suffering so many have endured. My psych provider is turning heavily towards non drug therapies as much a possible with medications as an acute crisis management tool only. Information on this site has helped push her further in that direction. When I have felt better consistently for awhile and have a list of things that definitely helped me I will be sure to post them in the appropriate forums.

 

[FeralCatman]

@manymoretodays Forgot that I was supposed to be tagging a moderator when I post on my introduction thread so sorry about that.

 

I am definitely feeling better. My blood sugars seem to be stabilizing at lower levels and the spikes are smaller and I have lost some weight. My overnight blood sugars are sitting between 90 and 110. That's the first time ever since I was first diagnosed as diabetic. All signs that my endocrine system is making adjustments. It may also partly explain the recent upsets in that my body is just trying to adjust to a new normal and gets a bit confused and freaks out from time to time. My first lab result came back and my 24 hour histamine levels are normal so things are moving in the direction away from MCAS and towards a histamine intolerance / sensitivity that should pass in time. I have several more tests I am waiting for before I call the ball and will update when I get them. What I am learning quickly is that my former limits on stress and daily activities have for now been greatly reduced and I need to operate within those limits for now and as time goes by I will have to expand them back out again. Extreme patience is the key.

 

I have been reading quite a bit on 'Symptoms and Self Care' and realized something this morning.

 

I have been through all of this before. Multiple times.

 

At the time I was told it was either my illness or I was adjusting to a new medication. In looking back at my medication timeline and extensive reading of 'Symptoms and Self Care' it is pretty obvious that I have been through withdrawal and recovery many times. It is awful that they do this to people. With the number of meds I have been on and the number of times I have been CT'd it's amazing I am even still here to talk about it. However, there is very good news for everyone here in realizing this.

 

Each time I went through it it took on average 6-14 months to stabilize and achieve some sort of normality in sleep, appetite, vital signs, etc. The worst was after my last hospitalization where they dropped my Seroquel by 200 mg in one shot and completely stopped my Tegretol at the same time and replaced it with Ativan. I had to restart at the lowest dose when I got home on my own. It took 3 months for me to be able to tolerate much food, the anxiety was horrific, sleep was sporadic, etc. All familiar things to people here. After 3 months the worst of it passed except for the neuropathy that I developed. My skin, especially on my arms, felt badly sunburned constantly. It was diagnosed by a neurologist as small cell peripheral neuropathy and was told it was due to my diabetes. They were wrong. It healed up in 14 months and is still gone many years later.

 

This realization gives me hope more than anything else. I have been through this before and healed. I will heal again as will everyone else here eventually so hang in there. It will happen 😉✌️😺😺😺😺

[manymoretodays]

Hi Feral! 

You don't have to necessarily tag a moderator for each post.  Posts of course, do get scanned, and prioritized by staff.  

I don't mind though, popped in today,  and do know how nice it can be to get a reply sometimes when you are getting things all in perspective.

Which it seems you are.

 

I'm kind of inactive right now.......longish break but tickled to read that you are feeling good and seeking medical care for you medical issues right now, while in a HOLDING pattern.

I really do need to do the offline thing from time to time.  Take some huge breaks.  I read that you do that too, so I'm sure you get it.

 

HOLDS can be lengthy at times, and yes, you will, when the time comes....... need to carefully taper the metopropol to avoid rebound increases in your BP.

We've got a couple topics:

* Tapering Beta Blockers or Alpha Blockers

^definitely worth a read

Beta Blockers: Propranolol, Metpropol, Atenolol

 

And I'm assuming you've plugged it into your interactions checked as well?  I know you were doing good at that.

 

2 hours ago, FeralCatman said:

This realization gives me hope more than anything else. I have been through this before and healed. I will heal again as will everyone else here eventually so hang in there. It will happen

^ sums it up nicely and thank you for the positive intentions for all!

 

I enjoyed your update and wish you continued healing.

 

And most definitely do tag someone when you have a specific question that needs attention.

 

L, P, H, and G,

mmt

 

 

 

[Pollyjay]

It's so good to read your update and see how much better you're feeling! There's so much more hope now that you know your histamine levels are normal. You really do seem to have a good team of doctors! 

 

I'm glad that you're finding ways to manage your symptoms. I know when I was at my worst, even though I tried to read and apply what I was reading in the self help areas; here and on the web, I just couldn't apply any of the techniques. But now that my symptoms are easing up a bit I'm more able to do the breathing and CBT type stuff. 

 

I'm particularly happy to read that your neuropathy symptoms cleared up! I've got them in my hands. Although I did take the advice of DR Berg on you tube and started taking Benfotianine. It's a fat soluble vitamin B1. I was reluctant to start taking a supplement but it does seem to be helping and, maybe it's just a coincidence, but since I started taking it about 4  days ago, the anxiety has not been as bad! 

 

Please keep updating and letting us know how your doing. 

 

Praying that you'll continue to make strides to complete recovery!

 

Pollyjay

 

[FeralCatman]

Had some more good days this week. 3 really good days in a row, Thursday was a bust, Thursday night was awful, Friday was so so, and Saturday was really good again. So far I feel fine today. So I seem to be back to having more good days than bad. Once all of this MCAS and nutrition testing is done I should be able to relax for a bit with the medical stuff. I have a good idea of what happened but won't post the summary until the testing is done.

 

There has been a very positive outcome to this food sensitivity fiasco. Working with my nutritionist I have scaled back my diet to bare bones basic as I really didn't have much choice. Since I did that my sugars have dropped significantly and my current average glucose is now 123 which is no longer diabetic. I am back into the pre-diabetic range for the first time in 16 years. I have also lost 13 pounds, partly as a result of the adrenaline issues when I lost a pound a day for a bit, and am down to 173 and stable. That's the lowest my weight has been since 1994 when I was still in the Navy. So, all of this recent craziness and suffering has resulted in something very good. I plan to stay on this diet for a long time and will start adding in things one by one week by week next winter. It's boring but it is helping and that is what matters and fortunately I am not a picky eater so I don't mind eating the same few things every day. 😁

 

All of my vitamins have been swapped out to ones with no colors, preservatives, etc on the recommendation of my nutritionist. I am tolerating my new vitamin D, Vitamin C, Fish Oil, and a Multi Vitamin just fine. Going to try some Quercetin next. When the nutrition testing comes back my nutritionist will recommend an appropriate probiotic and any other necessary treatment for what is found. My PCP is also having me slowly taper off of my Nexium which should help my digestion. I am using a jewlers scale to do the taper. I took out 20 % of the beads for this week and will see how I feel. If I do okay then next week I will take out 40% of the beads and see how I do. I started Nexium when taking NSAIDS every day for my Ankylosing Spondylitis but no longer take the NSAIDS so don't need it any more. We are looking at other options should I need the NSAIDS again which at some point I probably will. Nexium and other PPI's are one of the most common causes of gut dysbiosis so hopefully getting off of it will help. Either way, one less medication for my body to deal with is a good thing.

 

The VA also prescribed me a CES (Cranial Electrical Stimulation) unit for sleep and anxiety and it actually works pretty well. I use it for 20 minutes twice daily and it definitely helps relax you and it's not a drug. It supposedly helps build Vagal Tone and need for it's use should decrease over time. The unit they prescribed also doubles as a TENS unit for pain so I am going to use that as well for joint pain.

 

All in all good things seem to be happening despite some bad days and progress is definitely being made.

 

May 1st marked 9 months off of Seroquel. 😁😸😸😸😸

[OldDodgy]

@FeralCatman

 

Thanks for encouraging post, onwards and upwards. 
 

Great news about the diabetes thing. ! 
 

Agree Omeprazole causes havoc.  I was B12 and iron deficient on it. I now just use Gaviscon! 
 

OD 

[FeralCatman]

@Frogie I have a couple of questions regarding meds.

 

1.) My anxiety always seems worse in the morning and improves as the day goes by. I am still waking up at 3-4 am. Sometimes with anxiety but getting some days now that I just wake up and can't sleep any more but feel okay. I take my 10mg paxil at night. I am wondering if the paxil could be contributing to my morning anxiety and if what once was helpful has now become activating. Not looking to change anything right now that is not critical so looking for information. I am trying to keep things as consistent and stable as possible for awhile.

 

2.) I am now also taking metoprolol ec succinate 25mg at night due to the adrenaline surges causing high BP. It makes me really tired so I take it at 8 pm and am in bed at 9 pm. Paxil can increase the effects of metoprolol in some people. Would it be better to not take paxil and metoprolol at the same time of day? Would it be better to take the paxil in the morning and the metoprolol at night? If so how would I go about switching the timing without upsetting things? Again, not looking to change things if I don't really need to.

[Lauren90]

On 3/20/2022 at 3:52 AM, FeralCatman said:

I have a question for everyone, especially Seroquel survivors.

 

I am 7+ months off of Seroquel now. I have been experiencing anxiety attacks that feel like they start with discomfort in my gut and bowels. I get pain in my abdomen, lower intestine, and bowels. Shortly after that I start getting what feels like adrenaline surges followed by moderate to severe anxiety. So basically it feels like body generated anxiety that starts from the bottom and moves up instead of starting from the top down. These last for about an hour when they happen. I am still having the early morning waking anxiety to varying degrees daily. Some mornings it involves just waking up a bit early and being really awake instantly and other times it is a crippling curled up in a ball on the couch anxiety. The vagus nerve exercises seem to help as does walking and eating a low histamine diet.

 

Any of this sound familiar to anyone? If so what did you find that was helpful.

 

I am going to see my provider for a CES (Cranial Electrical Stimulation) device that has been shown to help some people.

Just came across your post. I’m down to 50mg Sertraline from 200mg Sertraline and my adrenaline surges/stomach churning/morning anxiety is REAL. It’s awful. The second I open my eyes, even if I’m still super sleepy my body is refusing to rest. How are the surges going for you?

[FeralCatman]

@Lauren90 The Metoprolol ER Succinate 25mg tablets my PCP prescribed pretty much nipped the adrenaline surges in the bud. Had to do something since my BP was so high (spiked to 175/110). Unfortunately when it is time to come off of that I will have to taper it but it is helping. The anxiety still comes and goes but I am having more good days in a row than bad. Averaging 4-6 hours of sleep per night. Since May 1st I only have 2 bad days marked on the calander with 2 bad nights at the same time. I had 6 mediocre type days with mild symptoms marked and 8 good days marked.

 

So out of 16 days that is:   50% Good - 37.5% Mediocre - 12.5% Bad

 

I actually had a day a couple of days ago that was completely normal. No anxiety, no surges, no nothing. Just normal and boring. It was amazing. So progress is slowly being made. I find that being on a simple and clean low histamine diet has helped. All whole foods, no eating out, no preservatives or colors, etc....just back to basics simple. Same with my vitamins and fish oil. I have a nutritionist who made sure I am getting all of my nutrients with what I am eating so I am going to keep it like this for awhile. Seems like the fewer chemicals you can put through your system the better.

[Frogie]

@FeralCatman

 

You should take them at least 2 hours apart from each other. So you could move the Paxil up an hour each night for a couple of days and see if that helps.

 

It sounds to me like you are getting cortisol spikes early morning which is normal. Everyone gets them, just people on these medications feel them a lot stronger than someone that isn’t on them.

[FeralCatman]

@FrogieThank you. I will separate the doses by 2 hours. I am also going to slowly move the Metoprolol to 9pm by changing the time I take it by 10 minutes every day. Ultimately I will take everything but the Metoprolol at 6 pm and then will be taking the Metoprolol at 9 pm. Hopefully this shift will help. I will be so glad when all of this craziness has passed. Woke up at 4 am today with no bad anxiety or surges so things are very slowly improving. Once I am off the Nexium I will hold for a bit to see how my guts respond and then I am going to work on slowly getting my Allegra dose back down to 180mg twice a day. Once that is done I will hold for awhile and see how things go.

[Frogie]

@FeralCatman

 

Just beware that once you stop the Nexium you will probably have heartburn. It stops the production of stomach acid. I was on Prilosec for years and it took a good month or so. I just ate bland until my stomach got used to the acid again.

 

Sounds like you have a good plan going. I'm really glad to hear you aren't waking with bad anxiety and surges as before. That is always a good sign.

 

Please keep me updated.

[FeralCatman]

@Frogie I am tapering the Nexium. I open the capsules and use a jewelers scale to put the reduced dose back in. Last Sunday I took out 20% by weight so the dose was 80%. No problems so far this week. This coming Sunday I will take out 40% by weight so the dose will be 60%. If I have symptoms I will stop there until I feel better and then start in again. Slower if needed.

 

My engineer in the Navy hated rework and had a saying he drilled into us. "Slower is faster". From now on that is my mantra with all of these meds. I have given up on strict timelines and am just going with how I feel. The consequences just suck too bad to do otherwise.

[Frogie]

@FeralCatman

 

That is a great saying to remember. You are not on a schedule, do as your body feels. I finally told myself, "slower than a turtle", because I just wanted it over and I learned the hard way. You are starting out with a great attitude toward this and it will pay off in the long run.

 

The Nexium schedule you are using sounds like a good plan.

 

Let me know if I can help any further or you have any questions.

 

[FeralCatman]

I just posted this in Finding Meaning. Thought I would post it here as well. Here is the link.

 

 

[FeralCatman]

 

Update on Diabetes

 

On April 26, 2022, less than a month ago, my A1C was:

 

6.2% with an average glucose of 131

 

Today May 20, 2022 I took a home A1C test and it is now:

 

5.5% with an average glucose of 110

 

A normal, Non-Diabetic A1C is 5.1% or below with an average glucose of 100 or below.

 

I am almost there and it seems like the decrease in glucose levels is accelerating rapidly since just a month ago. So from time of cessation of the Seroquel on August 1, 2021 to time of visible rapid recovery of my glucose levels was 8 months and 25 days.

 

Going through this craziness is definitely worth it to see results like this.

 

Hopefully more of the excess weight will go next. Once I am up and fully active again I am pretty sure it will.

 

😁😁😁😁😁😁😁😁😻😻😻😻

[Pollyjay]

Love to see your updates ,that's such great news FCM!! 

 

How are you feeling?

[FeralCatman]

@Pollyjay Still up and down but that's to be expected. I just posted on your thread but wanted to answer your question. I am doing as well as can be expected at this point. More of my MCAS testing came back and so far it is all normal. So this is looking more and more like it is WD related which is good because that will heal over time. Currently researching adrenal fatigue and adrenal dysautonomia to see where they may fit into the picture and what I can do that would be beneficial so I can eventually get off the beta blocker. Lots of healing to do. Still waiting for a test the nutritionist ordered so we can see what kind of shape my guts are in so we can tailor what we do to match what is broken. The test will be back at the end of the month so I will update on that. I speak to my ENT doc about the MCAS labs on Monday and talk to Immunology on June 7. The only other thing that came back bad was my IGM levels are now low. They had been fine up until now. I already had low IGA and IGG. Those are all immunoglobulins which are part of your immune system and because they are low I have the diagnosis of hypogammaglobulanemia which is just another way of saying immune deficiency. We had hoped it was the seroquel but that is turning out to not be the case. It could also be the carbamazapine but there is no way to quickly test that. I also have a couple of red blood cell values that are off. I have a truckload of toxic exposure on top of the meds from where I lived as a kid and the military and my other jobs as well as occupational radiation exposure . Hopefully it is not bone marrow related. I will find out June 7 where we go next.

[FeralCatman]

Quick update. I am now on my third straight day of complete normality. No anxiety. Relaxed. Cool as a cucumber. Sleep is still off but oh well. It will straighten out in time. Amazing 😁

 

I found the final dietary culprit that may have been causing trouble. I had completely cleaned out my diet of anything artificial and went hard core low histamine, or so I thought. I finally read the label on the jar of chicken boullion cubes I had been using in my nightly boiled supper. They seemed harmless enough. Turns out they are little cubes of toxicity and contain a long list of toxic food additives such as MSG. I stopped using them and switched to garlic powder, onion powder, and salt. No more headaches and digestion is better.

 

I am down to 70% of the full dose of Nexium and am still doing fine.

 

Physical activity will probably need to be restricted for awhile but I am still able to get done what I need to get done.

 

Hopefully the trend will continue.

 

Sooooooo nice to feel better. 😁😸😸😸😸

[FeralCatman]

On 1/17/2022 at 6:23 PM, Altostrata said:

My guess is a lot of your problems stem from gut damage, not from Seroquel's effect on histamine receptors.

@Altostrata

 

No need to reply to this but I wanted you to know that it looks like gut damage is now confirmed to be at least part of the problem. Probably a big part of the problem since most of my symptoms seem to start with my guts. I have started seeing a nutritionist and she did a 24 hour cortisol test and a GI Map Stool test. The cortisol was of course very high. Not a surprise right now. The GI Map test shows Gut Dysbiosis and SIBO. Most of my good bacteria are very low and I have high Bacillus spp. bacteria and High Streptococcus spp. bacteria levels both of which can cause quite a few problems on their own. One of my digestive enzymes is way too high and my IGA response was borderline low. All of this makes my guts a bit of a mess and is probably the combined result of Seroquel WD and years of medication induced gut abuse. So, I find out this coming Tuesday what her plan will be for all of this. The whole food low histamine diet definitely helps since I currently seem to have food related histamine issues so we are addressing a histamine intolerance as well. I have confirmed that Dairy of any kind right now is a big no no. I am slowly tapering off my Nexium per her suggestion and my PCP's approval at a rate of 10% a week. All of these issues can be addressed and healed over time so it is good news and should in time help me get back up and running. Certainly better than alternatives like MCAS. Seems like trying to yank away another antihistamine too quickly was just too much for my body to handle in a hypersensitive post WD state and my guts and ANS just freaked out. This makes sense since Allegra binds heavily to receptors in the gut and unbinding them too quickly just added to the chaos already unfolding in my guts. There were other stressors as well along with things I was doing, some which I thought would be helpful like stepping up my exercise routine, that I should not have because my body was already too stressed out to handle it. I am writing a critique of the last few months and will post it when done so other people can chime in and also learn from my mistakes.

 

Thank you again for putting this site together and for all of the information and support that it offers. I am grateful for having found it. My providers are all aware of this site and are educating themselves. They are all on board with my continuing down this path and they are all quite insistent that I do all of this very very slowly in adherence to the 10% rule and holding when needed. I will not be cutting back any more psychiatric medications for quite awhile to give my body time to heal and adjust. Whatever I need they are helping me with all of this and part of their ability to help me is coming from this website. 😉✌️😺😺😺😺

[Altostrata]

Good to hear you've put together a supportive team, @FeralCatman, and you're feeling a little more in control of your condition. Please let us know how you're doing.

[FeralCatman]

So, after a few months of obsessive research and mental contortions and frustration and crazy symptoms I finally got the last piece of information to solve the problems I have been having. Here is the holistic view I promised awhile ago.

 

I was reading about histamine intolerance and Diamine Oxidase Deficiencies (DAO Deficiency)

 

Here is a link to a website that discusses all of this:

 

https://drhagmeyer.com/dao-deficiency-how-to-activate-the-enzyme-that-reduces-histamine-intolerance-and-mcas-symptoms/

 

There are many websites and studies which discuss this if you want to read more.

 

DAO is the enzyme you need to break down histamine from your food. If you are low on this enzyme you will get symptoms of Histamine Intolerance of which I have had many of them.

 

DAO is dependant on vitamins C, B6, B12, Copper, and Iron. I have had testing and am not deficient in any of these. I take a multivitamin and an extra 1000mg of vitamin C daily.

 

DAO function can also be suppressed by the following medications.

 

1. NSAIDS (which I have taken for my Ankylosing Spondylitis)
2. Antidepressants (I am taking Paxil)
3. Metformin (Which I used to take for diabetes)
4. Beta Blockers (Which I now take Metoprolol for the adrenaline surges.)
5. Anti-Histamines (I take Allegra of which the higher dose may not be helping me much and I took Seroquel for many years which is also a very powerful antihistamine)
6. H2 Blockers like Zantac (which I have never taken on a regular basis)

 

As you can see I am currently taking quite a cocktail of meds that all reduce or inhibit DAO functionality and have for many years. Not surprising I am having food issues.

 

Stress can also reduce DAO function and I have been under quite a bit of stress the last couple of years with this pandemic coupled with an immune deficiency and all of my other health issues plus trying to get off of meds and dealing with the side effects of coming down off of the Seroquel.

 

The seroquel and Allegra both bind with H1 receptors in the guts. When I stopped the Seroquel it opened up some of the gut receptors and opened me up to histamine intolerance symptoms but I still had protection from serious symptoms from the Allegra. Last October I stopped the Allegra cold turkey and BAM, no more protection for my guts from these severe symptoms. The gut symptoms coupled with a hypersensitive nervous system caused severe issues. This is why Benadryl worked so quickly. It is an antihistamine and a sedative. It blocked the gut receptors and brain receptors and its sedative effect calmed me right down. Later when I tried to taper off of the Allegra the same thing happened and I could not get off of it for the same reasons and this is why the benadryl helped again.

 

I just got my GI Map test back and my gut bacteria are a mess. Almost all of my good bacteria are low, some other enzymes are off, I also have strep bacteria and bacillus bacteria which are opportunistic bacteria that are really bad for the guts and can cause a lot of problems on their own. So, my digestion is also off and this can of course cause many problems. Basically I have gut dysbiosis and SIBO which need to be dealt with.

 

My nervous system is still hypersensitive and is sympathetic dominant. This is due to having been on a heavy sedative for many years that reduced my sympathetic nervous system activity and at the same time resulted in a weak parasympathetic response. Now that I am not on the sedative (Seroquel) I am heavily sympathetic dominant and my parasympathetic response is still too weak to balance things out. This will improve over time and there are things I can do to help this along.

 

So the problem is a combination of 3 things.

 

1. DAO suppression by medications resulting in histamine intolerance symptoms.
2. Gut Dysbisosis and SIBO (This can also be contributing to my immune deficiency and may in fact be the cause)
3. Sympathetic nervous system dominance and a weak parasympathetic nervous system. (ie. Dysautonomia)

 

There is really good news in all of this

 

The above list gives me a recipe to follow to heal from all of this in the most efficient manner possible

 

Recipie for a happy Feralcatman

 

1. Work with my nutritionist to address the gut and nutrition issues and the DAO deficiency - Histamine Intolerance.
2. Work on strengthening my parasympathetic response through my acupuncturist, my CES device, exercises I can do at home, stress minimization, increase exercise and activity as tolerated.
3. Continue working on eliminating medications in the following order.

 

1. Next med to reduce when ready will be Paxil (it is going to be quite awhile before I start reducing but I will get there)

2. After the Paxil is gone reduce and eliminate the Beta Blocker (If addressing the gut and histamine issues results in remission of current symptoms I may be able to do the beta blocker first)

3. After the Beta Blocker is gone I can reduce and possibly eliminate the Allegra

4. After the Allegra is gone I can reduce and eliminate the Tegretol

 

The paxil and beta blocker are first because I can eliminate them the quickest. Also, Paxil can be activating and Tegretol is calming so doing the paxil first allows the Tegretol to blunt some of the withdrawal issues from the Paxil.

 

Allegra may take quite awhile as will the tegretol so they are last. Same as paying off debt and improving your credit score. Pay off the lowest balances first and work your way up. The med reductions will take many years but the gut issues and histamine intolerance and nervous system issues can all be dealt with fairly easily right now and should improve things quite a bit.

 

It took awhile and a few contortions but I am sure this is right and I can move forward now.

 

Thought you all would like to know.

 

The Feral Catman😉✌️😺😺😺😺

 

BTW: This is not medical or tapering advice for anyone else, just a look into my thought processes and a summary of what I found and what I am going to use as a plan going forward. It also shows how being an obsessive fact gatherer can pay off even if it is a bit of a stressful process. 😜