FeralCatman: recovering from Seroquel

[FeralCatman]

@manymoretodays @KiasofiaSo, it looks like I am going to have to hold on reducing the Allegra for awhile. It has been a week and I am still having GI issues and am having mood and anxiety issues and am getting what feels like adrenaline surges again. I am also having issues with sound sensitivity again, episodes of blurry vision, tinnitus episodes, brief muscle spasms, and I am irritable as h***. My BP is still good and I just checked my glucose which is 99 which is excellent and my EKG is unchanged so I just have to let my body catch up with the reduction in the antihistamine. I read up on Allegra and it binds with H1 receptors in the GI tract among other places so my assumption is that this is what is causing the issues. It could also just be part of the Seroquel recovery process but since I just did a rapid reduction in the Allegra it makes sense that the reduction of the antihistamine is causing the issues. No way to really know for sure. I have decided to not stress about getting the allergy testing done and will wait until I can slowly and safely get off of the Allegra. I am going to hold at taking the 12 hour 60mg at night until spring allergy season is past and then start in again. I don't want to overload on histamine during oak pollen season and I need my guts to straighten out or I risk throwing myself into withdrawal from the Tegretol and the Paxil I still take due to not digesting and metabolizing the meds properly. Oh the wonders of Poly-pharmacy 😒. No need to add insult to injury and I just need to be patient. I will update again when I start reducing again this summer.

[Kiasofia]

It's good that you are listening to your body and proceeding with caution. Hope your current symptoms settle down soon.❤️

[FeralCatman]

@Kiasofia @manymoretodays I just had a Telehealth Appointment with my PCP. He said the symptoms that I have been having since my last Allegra reduction were actually an anaphylactic or anaphylactoid type reaction to histamine overload again. So it was a good call to stop reducing for now. When I start in again I am going to have to use the liquid children's Allegra and titrate down very slowly. Here is the complete list of symptoms that I have been having over the last 2 weeks. Today I am finally starting to feel better. Another odd thing that crept up is that I can no longer drink Chamomile Tea. All of a sudden it is knocking me on my a** like I just took 100mg Seroquel . So, there is evidence of PAWS Hypersensitivity right there even with a mild herb that I have been using for years. Crazy stuff.

 

1My BP is still good

 

III started getting glucose spikes again, especially while sleeping

 

3I am getting the waking anxiety again which I can tolerate

 

4I am getting fluctuating mood symptoms again which I can tolerate

 

5Transient Blurry Vision

 

6Transient Sharp Eye Pain

 

SSudden severe fatigue

 

8Sharp stabbing pains in sides and gut

 

9Transient severe itchiness

 

1Random transient nasal allergy symptoms

 

1Head pain

 

1My hands and feet keep turning to blocks of ice and even a hot shower doesn't do the trick

 

1I am getting body wide muscle spasms

 

1My temperature regulation is out of whack. I get cold and have to add layers even in the house at a constant 69F and 50% humidity. Then I start to get  overheated and have to remove layers. This issue is keeping me from doing too much outside because I can't maintain a proper temp so winter hiking is out again for now. I have reverted back to walking on my road and doing short woods walks on some well traveled trails in Norway.

 

1I have been peeing like crazy. Seems like my body is trying to get rid of something. I suspect excess histamine. My fluid intake has not increased.

 

II keep swelling and bloating and then it goes away. I gage this by the tightness on my medic alert band. The size of my wrists is fluctuating by about 1/4" in circumference and my weight is fluctuating more than normal.

 

1My spine and SI joints are swollen up and I can't take anything for it due to my guts.

 

1The biggest problem is my guts. My digestion is way off. I had a couple of days that, even though I am still on Nexium, I was excreting stomach acid out the back end and spent 2 days on the couch unable to comfortably sit up or leave the house because I needed to stay near the facilities. There has been improvement but symptoms are still ongoing. I am concerned that if this continues it could cause me to go into withdrawal from the Paxil and Tegretol I am still on due to not being able to digest and metabolize the meds properly. I started a pro biotic again to try and level things out.

[FeralCatman]

Not sure why the numbers are showing up in that last post. I tried to undo it but they apparently think they add something important to the posting and won't leave. So, oh well.

[Kiasofia]

2 hours ago, FeralCatman said:

I can no longer drink Chamomile Tea.

I have seen others react to this too. I'm still drinking it and hoping for the best....so much to look out for when in withdrawal.

 

Glad you feel better today❤️

[FeralCatman]

@ChessieCat Since both Allegra and Seroquel are H-1 blockers I had an idea that may help people who are having an especially hard time getting off of Seroquel and wanted to see what people think of it. Please don't anyone take this as advice or try it at least for now until some of the moderators have had time to weigh in.

 

Back Story:

 

I finished tapering Seroquel this past August 1. My final dose was 6.25mg. At the time I was also still taking 180mg daily of Allegra (Fexofenadine) for allergies. Stopping the Seroquel, at first any way, did not cause a problem. However, shortly after that I stopped the Allegra cold turkey as I usually do in the fall since I don't normally need it all year. According to my PCP, ENT Doc, and my immunologist I began experiencing symptoms including symptomatic hypo-tension that indicated to them I had experienced a slow motion slide into an anaphylactic reaction due to histamine overload. Fortunately, at it's very worst, I figured it out on my own and was able to correct it by taking benadryl. I tested the theory again 2 days later by stopping the benadryl and the same thing happened and a benadryl again fixed the issues so I re-started the Allegra and contacted my doctors who then informed me what had happened. I waited until things froze over and were snow covered and then started reducing the dose again. Week 1 I switched to 12 hour Allegra twice daily for a total of 120mg. Week 2 I cut the morning dose in half for a total of 90mg daily. The third week I eliminated the morning dose for a total of 60mg daily. The first 2 weeks I had symptoms for 3-4 days and then felt better. After the third reduction I got very sick and again was flirting with anaphylaxis and it took 3 weeks to recover. I am still on 60mg daily and on the advice of my PCP I am starting a slow taper again starting Sunday so I can get the last of the H-1 blockers out of my system and start recovering. I will be using Childrens Liquid Allegra to do the final taper.

 

The Idea:

 

Given what happened after I stopped the Allegra, 6.25mg of Seroquel was probably still to high to jump off from for me since it is a very powerful H-1 blocker. Once I restarted the Allegra I recovered fairly quickly. So, being on the Allegra when I jumped off the Seroquel may have actually cushioned the blow and it was the rapid dose reduction of the Allegra which got me into trouble with a still overly sensitive histamine system. Since Seroquel only comes in 25mg tabs or higher it can be hard to micro taper if you need to. I am wondering if when tapering the Seroquel you could start an OTC allergy medication like Allegra, Claritin, or Benadryl which are all H-1 blockers once you get down below 25mg of seroquel to cushion the shock of coming off of Seroquel and then finish tapering with a liquid version of one of the OTC H-1 blockers instead and avoid the massive inflammatory reaction like what I experienced and possible damage and/or a trip to the ER as a result. Doing this may make things easier and more comfortable for people to ease off of the Seroquel.

 

As I said I am not sure if this is actually a good idea or not so I wanted to see what people think. From my end, anything that can make it easier and safer to get off a drug like Seroquel is a good idea since it is so incredibly difficult to do. It took me 3 years and 4 months to come down from 700 mg. The first 200mg drop was done in one shot in the hospital and it nearly killed me. The remaining 500mg I did over about 3 years and 3 months.

[Blossom71]

1 hour ago, FeralCatman said:

 

Given what happened after I stopped the Allegra, 6.25mg of Seroquel was probably still to high to jump off from for me since it is a very powerful H-1 blocker. Once I restarted the Allegra I recovered fairly quickly. So, being on the Allegra when I jumped off the Seroquel may have actually cushioned the blow and it was the rapid dose reduction of the Allegra which got me into trouble with a still overly sensitive histamine system. Since Seroquel only comes in 25mg tabs or higher it can be hard to micro taper if you need to. I am wondering if when tapering the Seroquel you could start an OTC allergy medication like Allegra, Claritin, or Benadryl which are all H-1 blockers once you get down below 25mg of seroquel to cushion the shock of coming off of Seroquel and then finish tapering with a liquid version of one of the OTC H-1 blockers instead and avoid the massive inflammatory reaction like what I experienced and possible damage and/or a trip to the ER as a result. Doing this may make things easier and more comfortable for people to ease off of the Seroquel.

 

Hi @FeralCatman

 

thanks for posting about your experiences from cutting down the antihistamines.  
 

I am just starting to taper sertraline slowly after a couple of large drops and long holds. After reading about histamine I’ve been wondering how I’ll  about reducing my antihistamine intake.

 

I take promethizine for sleep and then I take a daily dose of either fexofenadine or certrizine between maybe March and July for birch pollen allergy.  The birch pollen allergy doesn’t cause me too many problems but I have Oral Allergy Syndrome so have reactions so any foods with the same protein structure as birch pollen (so anything in the brassica family).   During tree pollen season my system goes absolutely nuts and the reactions are pretty regular despite me doing my best to avoid the foods I react to.

 

it will be interesting to see how my taper affects my allergies this year.

[FeralCatman]

@blossom71 My PCP has recommended continuing with a slow taper now so I can finish clearing my system of H-1 blockers so my histamine system can fully recover. He pointed out that any serious issues can be treated with raising the dose again or reinstating if needed. Since he has gotten more right along the way than anyone else on my treatment team I am going to move forward with a slow Allegra taper starting this Sunday. I will post any changes that happen along the way

[Blossom71]

I’ll be watching with interest @FeralCatman.   I hope it goes well for you.

[FeralCatman]

@Altostrata @ChessieCat I found this post on BenzoBuddies.org. This person had gone through withdrawal from Benzos and Keppra and had the same basic reactions to stopping Allegra. I have also found websites devoted to people struggling to stop taking Zyrtec and were experiencing withdrawal and very severe rebound symptoms. All I can say for sure is that I am not the only one. Reactions like these are probably just not caught because no one makes the connection. It makes me wonder how many people took OTC antihistamines long term and then had withdrawal and ended up on a psychiatric drug as a result because no one is making the connection.

 

http://www.benzobuddies.org/forum/index.php?topic=79691.0

[FeralCatman]

@Altostrata @ChessieCat The other thing this has left me with, since I am obviously having unexpected allergic reactions, is the need to stay away from everyone, especially hospitals, due to COVID despite my having had 2 shots and a booster. The logic being that if I am having reactions like this to stopping the Allegra then god only knows what reactions I will have to any treatments I am given if I get sick and even worse if I end up in the hospital. On top of that they will have no idea what to do about any of it because the reactions would be so unpredictable. It really puts me in a very precarious situation right now and I am doing everything I can to avoid injury or illness until my body has time to recover. I also have hypothyroidism, diabetes, Ankylosing Spondylitis and hypogammaglobulanemia and an IgA deficiency (ie: immune deficiency) so that complicates things even more. We are hoping the immune deficiency is medication driven and that it will get better off the meds. I get more blood work next month and am hopeful. It's a good thing I am largely a loner so the social isolation doesn't bother me, I haven't had a visitor or been in a vehicle with anyone in over 2 years, but it does make the daily nuts and bolts of my life very difficult right now with all that I have to deal with. This allergic reaction problem has made things even worse. I can't even go to acupuncture right now which sucks because it really helps and I can't take NSAIDS for the Ankylosing Spondylitis because my stomach is too sensitive right now. Hopefully once I am off the Allegra my system will calm down and the issue will go away. I will keep posting updates.

[FeralCatman]

Here is another website that documents issues regarding withdrawing from Allegra. Many of the symptoms are similar to what I have had. The person who posted this was told by an MD to expect 2-4 weeks of withdrawal symptoms after stopping it.

 

https://inpursuitofwildthings.blog/2015/10/09/seriously/#more-6354

[Altostrata]

I don't know that your problems are due to Seroquel. It is known that suddenly going off antihistamines, especially Zyrtec, can cause a rebound syndrome. With Zyrtec, it seem to be itching.

 

You have a lot of health problems and been on and off a lot of drugs. From what we've seen, this can make a person's nervous system hypersensitive to drugs and many substances. Some of our members have developed histamine intolerance or food intolerances that may be related to this.

 

What drugs are you currently taking? Please put ALL your drugs in this Interactions Checker and post the report or a link to it in this topic.

 

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

[FeralCatman]

@Altostrata Here is my daily medication list and data from the interactions checker. I have actually been using the drugs.com interactions checker for many years and it is one of the reasons I have been working diligently on shrinking my med list. At one point my various doctors had me on a total of 14 or 15 meds simultaneously including the nasal sprays. My list has shrunk significantly. You can view my entire history in the spread sheet I posted in this thread.

 

https://www.drugs.com/interactions-check.php?drug_list=1463-0,497-234,1800-1156,646-5790,1661-18676,1093-10681,298-0,2031-1316,1015-567,1086-622&consumer=1&types[]=major&types[]=minor&types[]=moderate&types[]=food&types[]=therapeutic_duplication

 

 

[FeralCatman]

@Altostrata So, apparently that link does not work so here it is in text form.

 

Drug Interaction Report

This report displays the potential drug interactions for the following 10 drugs:

• levothyroxine

• Tegretol (carbamazepine)

• Paxil (paroxetine)

• Vitamin D3 (cholecalciferol)

• Multi Vitamin+ (multivitamin)

• Flax Seed Oil (flax)

• azelastine nasal

• Crestor (rosuvastatin)

• Nexium (esomeprazole)

• Allegra (fexofenadine)

• Add another drug

• Consumer

• Professional

Top of Form

Major (0)

Moderate (5)

Minor (0)

Food (6)

Therapeutic Duplication (0)

Bottom of Form

Interactions between your drugs

Moderate

carBAMazepine - levothyroxine

Applies to: Tegretol (carbamazepine), levothyroxine

Using carBAMazepine together with levothyroxine can decrease the effects of levothyroxine. This can cause fatigue, weight gain, constipation, and low blood pressure. Talk with your doctor before using carBAMazepine while you are using levothyroxine. You may need a dose adjustment and may need to check your thyroid levels more often. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

carBAMazepine - cholecalciferol

Applies to: Tegretol (carbamazepine), Vitamin D3 (cholecalciferol)

Using carBAMazepine together with cholecalciferol may decrease the effects of cholecalciferol. Contact your doctor if your condition changes. If your doctor does prescribe these medications together, you may need a dose adjustment or special test to safely use both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

carBAMazepine - PARoxetine

Applies to: Tegretol (carbamazepine), Paxil (paroxetine)

Using carBAMazepine together with PARoxetine may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

carBAMazepine - azelastine nasal

Applies to: Tegretol (carbamazepine), azelastine nasal

Using carBAMazepine together with azelastine nasal may increase side effects such as dizziness, drowsiness, confusion, and difficulty concentrating. Some people, especially the elderly, may also experience impairment in thinking, judgment, and motor coordination. You should avoid or limit the use of alcohol while being treated with these medications. Also avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medications affect you. Talk to your doctor if you have any questions or concerns. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Moderate

levothyroxine - esomeprazole

Applies to: levothyroxine, Nexium (esomeprazole)

Taking levothyroxine with esomeprazole may interfere with the absorption of levothyroxine and reduce its effectiveness. Contact your doctor if you experience signs and symptoms of reduced thyroid function such as fatigue; sluggishness; constipation; depression; hoarseness; unexplained weight gain; sensitivity to cold; pale, dry skin; muscle aches, weakness, or tenderness; joint pain, stiffness, or swelling; heavier than normal menstruation periods; or brittle fingernails and hair. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor

Switch to professional interaction data

No other interactions were found between your selected drugs. This does not necessarily mean no other interactions exist. Always consult your healthcare provider.

Drug and food interactions

Moderate

carBAMazepine - food

Applies to: Tegretol (carbamazepine)

You should preferably avoid the regular consumption of grapefruits and grapefruit juice while taking carBAMazepine. This can cause carBAMazepine levels to increase. You should report signs of carBAMazepine side effects such as nausea, visual disturbances, dizziness, or muscle weakness to your doctor. You should avoid or limit the use of alcohol while being treated with carBAMazepine. Alcohol can increase the nervous system side effects of carBAMazepine such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

 

Moderate

levothyroxine - food

Applies to: levothyroxine

The timing of meals relative to your levothyroxine dose can affect absorption of the medication. Therefore, levothyroxine should be taken on a consistent schedule with regard to time of day and relation to meals to avoid large fluctuations in blood levels, which may alter its effects. In addition, absorption of levothyroxine may be decreased by foods such as soybean flour, cotton seed meal, walnuts, dietary fiber, calcium, and calcium fortified juices. These foods should be avoided within several hours of dosing if possible. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.When levothyroxine is given during continuous enteral nutrition (tube feedings) for more than 7 days, the tube feeding should be interrupted for at least one hour before and one hour after the dose of levothyroxine. You may need more frequent blood tests to monitor levothyroxine levels.

Switch to professional interaction data

Moderate

PARoxetine - food

Applies to: Paxil (paroxetine)

Alcohol can increase the nervous system side effects of PARoxetine such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with PARoxetine. Do not use more than the recommended dose of PARoxetine, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

fexofenadine - food

Applies to: Allegra (fexofenadine)

Consuming large amounts of certain fruit juices, including grapefruit, orange and apple, may decrease the levels of fexofenadine in your body. Fexofenadine should be taken with water and refrain from drinking large amounts of grapefruit, orange, or apple juice. This will make it easier for your body to absorb the medication.

Switch to professional interaction data

Moderate

azelastine nasal - food

Applies to: azelastine nasal

Alcohol can increase the nervous system side effects of azelastine nasal such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with azelastine nasal. Do not use more than the recommended dose of azelastine nasal, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. Talk to your doctor or pharmacist if you have any questions or concerns.

Switch to professional interaction data

Moderate

esomeprazole - food

Applies to: Nexium (esomeprazole)

Food may interfere with the absorption of esomeprazole. Esomeprazole should be taken at least one hour before meals and at the same time every day. When esomeprazole is given to patients receiving continuous enteral nutrition (tube feedings), the tube feeding should be interrupted for at least 1 hour before and 1 hour after the dose of esomeprazole. This will make it easier for your body to absorb the medication. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Switch to professional interaction data

Therapeutic duplication warnings

No warnings were found for your selected drugs.

Therapeutic duplication warnings are only returned when drugs within the same group exceed the recommended therapeutic duplication

[FeralCatman]

@Altostrata

 

2 hours ago, Altostrata said:

I don't know that your problems are due to Seroquel. It is known that suddenly going off antihistamines, especially Zyrtec, can cause a rebound syndrome. With Zyrtec, it seem to be itching.

 

You have a lot of health problems and been on and off a lot of drugs. From what we've seen, this can make a person's nervous system hypersensitive to drugs and many substances. Some of our members have developed histamine intolerance or food intolerances that may be related to this.

 

What drugs are you currently taking? Please put ALL your drugs in this Interactions Checker and post the report or a link to it in this topic.

 

 

Please keep daily notes of times o’clock you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time o’clock on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

@Altostrata It is hard to tell the root cause of the issues here since there are multiple things happening. I suspect that currently this may be a combination of antihistamine withdrawal and histamine overload due to an oversensitive system that has not yet repaired itself yet. The antihistamine withdrawal causes GI issues which I suspect causes me to not absorb the full dose of my Paxil and Tegretol which then triggers withdrawal from one or both of them. This has happened in the past when I have been sick with something that disturbs my GI tract and then the whole thing snowballs. It was much worse when still taking the Seroquel.

 

What you said about histamine intolerance may be part of the problem and it is something I have been discussing with my acupuncturist and immunologist. In talking with my acupuncturist and immunologist and discussing my detailed history we have a theory that I may actually have a MAST cell disorder that is and was the root cause of the original symptoms which caused me to be put on meds in the first place over 25 years ago. The testing that can be done won't really mean much until I can get off of everything and give my body time to recover. The next step will be to get my immunoglobulin levels tested again late next month to see if anything has recovered since I already know I have bone marrow suppression that we suspect is medication related. Once off the antihistamines and through allergy season then I will get the full battery of allergy testing done again and see what has changed. This will include the full battery of tests for food allergies which previously showed negative. This will be getting done through my ENT doctor.

 

I am very rigid about how and when I take my medications. Here is my daily schedule.

 

0600-0630: 100mcg synthroid

0700-0730: 20mg nexium

0800-0830: 200mg Carbamazepine

                     Azelastine Nasal Spray

                     1000mg Fish Oil

                     Vitamin C

 

1800-1830: 200mg Carbamazepine

                    5mg Crestor

                    Allegra - Currently 50mg

                    10mg Paxil

                    Multivitamin

                    2000 IU Vitamin D3

                    2000mg Fish Oil

 

I try to keep a very strict and regular schedule. I get some form of exercise every day I am able. Right now it is walking because my back is too sore to use my rowing machine or do calisthenics and I can't take anything for it right now. I also eat a very simple whole food low inflammatory diet some of which I have grown myself. Nothing pre-prepared or out of a box. Minimal wheat and bread. I am trying to learn about foods that will be beneficial so I can tailor what I grow to what I need to be eating. I grow my own herbs for cooking. I rarely eat takeout and when I do I have a limited list of choices I choose from. I kept a spreadsheet for many months that tracked meds, sleep, mood, weather, barometric pressure, allergens, moon phase, etc. I reviewed it periodically with my therapist and we could not find a single correlation with anything other than my anxiety is at its worst in the spring during Oak pollen season. Current mood symptoms I have are very random and not daily. Some days are fine and others I am a mess. Same for the physical symptoms. Some days I go back and forth from fine to mess and back again. I have been trying for years to correlate things but have only nailed down the allergy season issues. It's very hard to figure things out with my med list and body going through so many changes over the last 3.5 years. I did figure out over the last year and a half that I have a sensitivity to mold which is another thing we plan to test for once I am off the antihistamines and am stable and recovered for awhile. I expect that the next few weeks will not be pleasant while finishing the tapering down of the Allegra. Once that is done I will keep track of symptoms again and see if it yields any results that are different.

 

 

[FeralCatman]

@Altostrata Now that I have all of the information posted I want to say that I very much appreciate your helping me out on this. Based on what I just posted if you have thoughts I would love to hear them. Until the last 12 months I have pretty much been doing this on my own and have basically been flying blind trying to not run into a mountain top so it is nice to have someone knowledgeable to chime in on all of this. It's been a very confusing and at times wild ride. The reactions to coming off the Allegra caught me and my doctors completely off guard. However, now that I have found others who had the same issue at least I know I am not alone. With the histamine issues and MAST cell stuff my best resource has actually been my acupuncturist. He and I came up with current theories and then I presented them to my doctors who agree with them and will be helping me with all of the testing. Hopefully COVID will calm down in a few weeks and I can start going to acupuncture again. Lately I've been pretty miserable but in the grand scheme I have made huge progress compared to where I was a few years ago so the overall trajectory is actually really good.

[Altostrata]

The link to the drug interactions report works fine. 

 

Given your very complex health conditions and drug burden, it may not be possible to pin down any after-effects from your going off Seroquel. You may be well off it, despite any withdrawal it cost you, so that it does not add to your problems.

 

I see you're taking esomeprazole. I presume this is for some kind of gut problem. If I were you, I'd look up every single one of my drugs to see if any cause gut erosion or foster dysbiosis, which are causes of histamine intolerance. The statin is a prime suspect. It's also possible it may be interacting with one or more of the other drugs to create such an adverse effect.

 

As we address tapering of psychiatric drugs, only carbamazepine and paroxetine are within our purview. We have a few topics in the Symptoms and Self-Care forum about gut problems, but we're not specialized to offer counseling for mast cell syndrome or disorder, or histamine intolerance. There are many Facebook groups for this. We don't address allergies or antihistamines at all.

 

If you're concerned about whether you're absorbing your drugs, you might inquire about liquid forms, which usually get absorbed before getting into the gut. It's probably best for you to recover from covid and going off Seroquel without further changes in carbamazepine and paroxetine for a while. Not sure what more to add. Please let us know when you want tapering guidance.

[FeralCatman]

@Altostrata The whole point of my going through all of this is so that I can reduce my medications to the minimum possible and then reassess things at that point. Ideally I would reduce down to only my thyroid medications at least temporarily. I think you are right in that too much is going on to pin things down. I am trying to only change one thing at a time so I can have a better chance of figuring out what is doing what and when. It's still very difficult. I understand that the purpose of this site is for psychiatric drugs and not to help me address the other issues and wouldn't expect it. I posted the Allegra stuff just in case there are others who experience the same issue.

 

I take the Nexium for when I have to take the NSAIDS for my Ankylosing Spondylitis. Also, I found out years after the fact that Paxil was causing GI bleeding. Had someone told me this I never would have went back on it again and it is causing issues with taking NSAIDS which limits my treatment of the Ankylosing Spondylitis. The combination of the two greatly increases the chances of GI bleeding. I had 3 colonoscopies that showed nothing and then when I was in the Hospital in 2006 they detected high ammonia levels and said I had to stop the Paxil but they never told me what that meant. I only found out 2 years ago that high ammonia levels are associated with internal bleeding. This is apparently a class effect of all SSRI's as is uterine bleeding. No where in my record does it mention this. So, my next step will be to get off the Paxil though I am not sure when would be a good time to start tapering the Paxil. I will see how I feel after stopping the Allegra and get through allergy season and then assess the situation again and make a decision. I will be reading up on Paxil tapering in the mean time and will post when I get started with that.

 

Thank you again for you input and for running this web site. It is proving to be my best resource and will make tapering off the Paxil a much less harrowing experience since I will not have to go it alone this time.

[Altostrata]

I am sorry you're getting these adverse effects from your drugs. Drug-induced gut erosion is indeed a cause of histamine intolerance.

 

Which of your symptoms do you attribute to Seroquel withdrawal?

[FeralCatman]

@Altostrata As you pointed out, my medical history, medication burden, and current situation and symptoms is very complex so I am not entirely sure what is what. Neither are my doctors. This is actually the biggest problem I have had to deal with for a long time and is another reason I am slowly reducing my med list. My best guess is that since the Seroquel is a very powerful H-1 blocker and I was on it for 16 years my histamine system and ability to regulate histamine levels is, at least temporarily, broken. My PCP thinks my body up-regulated my H-1 receptors and everything I am experiencing right now stems from that. He expects that over 'many months' my system should down regulate and the symptoms should start to get better. My immunologist and my ENT doc agree with this theory. It's been 5 months since I stopped the Seroquel. So, in a nutshell, all of my current symptoms and what feels like an AS flare up would be from histamine overload due to alterations made to my body by the Seroquel and the histamine sensitivity is causing an inflammatory reaction. I come to this conclusion after talking with my PCP and from researching histamine sensitivity (histamine intolerance) and my symptoms match.

 

The other possibility is that now that the Seroquel has been out of my system for awhile my med list has gotten shorter there is less competition in my metabolism. A few years ago a doctor pointed out that a hazard of poly pharmacy is that the more drugs you take the more they compete for space in your metabolism. So, some days you may get more or less of a dose of one drug based on how the whole cocktail is being metabolized that day and it can vary from day to day. If this is the case my remaining medications may be getting metabolized differently now and so their effects are altered compared to what I have grown used to.

 

It could also be a combination of both and my body is simply letting me know it is tired of getting pulled through a taffy puller.

 

The hardest part is that none of this is testable. It's all just one big guess. However, the Histamine theory seems to make the most sense. It also explains why last fall after I stopped the Allegra and had the severe reactions that I experienced that benadryl fixed it very quickly. In all honesty, that first set of reactions last fall nearly did me in for good. It was really bad and with something like this there is no where to go for help with it.

 

The good news is that I am, as of yesterday, down to 50mg of Allegra and so far no adverse effects so that may be a sign that I am continuing to heal. I hope so. For lack of a better phrase, 'This Sucks'.

[Altostrata]

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

[FeralCatman]

@Altostrata Hmmmm......I had not considered that however it would make sense. I am sure that all these meds over the years would have done a number on my guts. As you said, gut issues can lead to histamine intolerance which would explain why benadryl helped and why coming off the Allegra is unexpectedly difficult. I will look into this. Do you have any references you could recommend or a place to start researching? Also, do you have any recommendations as to what I can do about the damage and help my guts to heal. I have recently started a course of pro-biotics after my stomach upset a couple of weeks ago. My diet is already gut friendly.

[FeralCatman]

@Altostrata In addition to everything we have discussed these articles outline another issue that anyone taking anti-psychotics has to deal with.

 

https://www.une.edu/news/2019/new-study-shows-antipsychotic-drugs-can-suppress-immune-system

 

https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0218937&type=printable

 

My immunologist went through the data in this study during our last video chat. He is a professor and a researcher. His eyes were bugging out. He is very straight laced but he was doing his version of swearing while he read it. Apparently, after only a week at low doses, these drugs concentrate in the bone marrow and start causing cell death. Even more frightening is that when he read the data it was not selectively targeting only certain cells. It was killing pretty much everything. So, I also have healing bone marrow damage. Much of the immune system comes from the bone marrow so some of my symptoms could also be related to bone marrow damage and / or the process of healing from the damage. My immunologist said that it takes a minimum of 6 months for bone marrow to regenerate and in my case possibly a lot longer. One thing I have noticed over the last 5 months is that my gums no longer bleed when I floss. This may be an indication of healing bone marrow. I looked again this morning and it seems like other universities are doing follow up studies. I also found mention that antidepressants can also do this but I have to read more to check on that and my cats are hungry right now.

 

Thought you would like to see these if you have not already.

[Altostrata]

Please join a histamine intolerance group on Facebook. They often have to work on gut healing.

[FeralCatman]

Update on the Allegra Tapering - I am stopping at 60mg daily and am going to stay here until the end of summer.

 

I tried reducing the Allegra again and had another bad reaction and am still recovering. I had to take Bendadryl again to get things to recover. Everything is still super sensitive to changes of any kind and my body definitely needs a break from changes right now. Even though it seems like tapering this medication should not be a problem it obviously is. I started having panic attacks again a few days ago and its been awhile and have been having bad anxiety and some depression for about a week before they started so I definitely need to not stress my body an more right now. I am having stomach issues again, headaches, dizziness, and weird numbness / tingling in my face, and eye pain again though my vision is not being affected. My sensitivity to chamomile tea is gone so I can use that again and my sensitivity to Benadyl is also gone so I can take that if needed. However, my newfound ability to tolerate half decaf coffee is now gone and I can't have any caffeine again. Even decaf coffee, which still has some caffeine is triggering a reaction so that is back off the list. I have also had some recent stressors which may be contributing to things. Feels like by doing too much I triggered a wave in my recovery or maybe this is just happening on its own and is just part of the process. It is amazing how sensitive I am to any changes and to inputs that I used to tolerate fine. One thing I can say for sure is that 6 months down the road I am definitely still healing from the Seroquel and probably have a long way to go.

[FeralCatman]

One other note. The Waking anxiety from 3am to 7 am is back again followed by about an hour of depression and anger and then things start to recover. I think the anger part is more from frustration and stress from the episodes than something separate. This is not new. It happened all throughout the tapering process of the Seroquel. At several points it would happen at 3am to 7 am and then recover and it would hit me again in the afternoon at about 3pm to 5 or 6 pm. This time it is only the morning.

[Altostrata]

Have you joined a peer support group that can help you figure out what kind of diet to follow? How often are you taking Ativan?

[FeralCatman]

I do not do any social media so have no way to join an online support group. I am generally not a group type person. I do research and consult with my acupuncturist and PCP. I really hate social media. I had it once for 2 weeks and found it to be incredibly intrusive and I am largely a private person so It doesn't work for me. You can no longer set up anonymous accounts either. Facebook now requires a picture to sign up so I won't do it. Given that I went through 7 years of identity theft I don't want to make things easy on anyone trying to do it again. The only reason I feel comfortable with this website is because I am anonymous.

 

I have only taken Ativan 3 days in the last 7 days. 0.5 mg the first time. 0.5 mg twice daily the other 2 days and then it has been several months since I have taken any. None so far today. I really hate the stuff and only use it as a last resort when nothing else works. I have never used it for more than 2 weeks at a time.

[FeralCatman]

So far I am doing better today. No need for Ativan at this point.

 

My insurance covers Naturopathic and Functional Medicine practitioners so I am looking into that for help with diet and histamine intolerance. Someone I know uses a Naturopathic Doctor and I have reached out to them for a reference. I also found a holistic psychiatrist nearby and am waiting to hear back about insurance coverage and cost.

[ChessieCat]

5 hours ago, FeralCatman said:

My insurance covers Naturopathic and Functional Medicine practitioners so I am looking into that for help with diet and histamine intolerance.

 

If they suggest supplements, please research BEFORE starting them.  To search on SA, you can use the site search function or an internet search engine and add site:survivingantidepressants.org to the search term.

 

It is better to take supplements individually and not as a complex.  Start with a small dose to see how you react.  Only make one change at a time.  See:

 

the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable

[FeralCatman]

Thank you for that advice. I won't be taking any supplements. Given some of the rapid changes in reactions to things I used to be fine with since I have stopped the Seroquel I am afraid to put anything new into my body right now. I am looking for advice, information, and some testing that my PCP doesn't do related to histamine intolerance / sensitivity and am hoping to find someone local who has some experience helping people with med withdrawal and recovery. I definitely have a histamine tolerance issue now. I am also developing food sensitivities. I decided to make some sugar free cupcakes which I don't normally do but have had them in the past with no issues. They made a mess out of my guts from just 2 small cup cakes. I am going to have to throw them out. I think it may have been the chocolate which I also don't normally have but it has never been a problem in the past. What a crazy learning curve this is turning out to be.

 

Also, I saw on your website the section about FDA approval. I discovered the same thing through my own research. I read through drug approval paperwork on the FDA web site and was flabbergasted. Some of the approvals had significant amounts of money changing hands between study administrators and study sponsors but the approvals happened any way. Absolutely shameful 🤨

[FeralCatman]

Allegra Update

 

So this will be my last post about the Allegra as it has nothing to do with Seroquel withdrawal. I heard back from my immunologist regarding everything that has been happening with this and it turns out he thinks that I have Mast Cell Activation Syndrome (MCAS) and that I cannot come off of the antihistamines safely at least for now. Based on everything that has happened I completely agree as some of what has happened was actually quite dangerous so thank goodness for my immunologist. I am actually going to increase the dose back to 60 mg twice daily so I can feel like myself again. Fortunately, since he teaches at Harvard and works at both the VA and Brigham and Womens in Boston, which at it turns out is one of the best places in the US for dealing with Mast Cell Disorders, I am in very good hands with regard to this diagnosis. We will be doing a full workup to confirm this diagnosis but MCAS clearly explains all of my symptoms and their severity both current and over many many years. It's nice to have a testable and verifiable explanation to many years of suffering.

 

There is some good news about being off the Seroquel as well. I had my routine blood work done a few days ago. After many years on statins all of my numbers are looking good and trending in the right direction. My triglycerides are lower than they have been for over 20 years and by my next set of labs I should be able to stop taking Crestor for good. The only change has been removing the Seroquel so it had to have been the Seroquel causing the high numbers. I take this as a good sign that my body is healing from the drug. A1C is steady in the low 6's and I think that once I deal with the MCAS problem and get stabilized I will be able to drive the numbers down further. Since histamine is responsible for endocrine homeostasis my endocrine system is a mess right now but once those levels are down we should see a change for the better. So, good news all in all.

[FeralCatman]

I just had a video appointment with my immunologist. We went over my entire history including things that happened before I was ever on medication and things that have been happening for many years but before I had ever heard of Seroquel let alone taken it. One of these things is that many years ago I started immunotherapy for my allergies. 2 days after the third shot I went into anaphylactic shock and had to call an ambulance. Delayed hypersensitivity reactions like this are an indicator of a possible Mast Cell issue. He ordered a truckload of blood tests and 24hour urine tests to rule a few things out. He is aware of the Seroquel withdrawal and is taking that into consideration so we can try to separate out what is withdrawal and what is the underlying condition. Not an easy task but not impossible either with a doctor who listens and does not assume. I am very lucky to have this guy on board with me. He is very much against prescribing anything new right now without additional data which is great. If I weren't so miserable on so many days right now I would be much happier about it.

 

Current issues I am dealing with.

 

No med changes recently. Current meds are:

 

Paxil 10mg every p.m.

Carbamazepine 200 mg both a.m. and p.m.

Allegra 180mg every a.m.

Crestor 5mg every p.m.

Synthroid 100mcg every a.m.

Nexium 20 mg every a.m.

Vitamin D3 2000 IU every p.m.

Multivitamin every p.m.

Fish Oil 1000mg 3x daily

 

Food Sensitivities that I have never had in the past. When I tried to get off the Allegra I couldn't eat anything without a reaction. Symptoms included Anxiety, sharp stabbing pains in my stomach, sides, and intestines, nausea, diarrhea, body wide muscle spasms, facial muscle spasms, sudden severe fatigue. Upon resuming the Allegra most of this cleared up or has been greatly reduced in severity.

 

I have switched to a low histamine diet which seems to help my guts.

 

Cyclic anxiety that seems to be connected with gut function every 12-24 hours. Currently it is every day at 3 - 3:30 a.m. I get jolted awake. The anxiety symptoms vary from manageable to crippling depending on the day and last 2-3 hours. I am dealing with it using Vagus Nerve breathing and other exercises and the last few days I have just gotten up and I go for a 3 mile walk which seems to help.

 

Depending on what I have eaten I am getting gut dysfunction of varying severity. It seems that when my gut issues flare up, so does the cyclic anxiety I am having issues with. The anxiety seems to start from the body and moves up instead of starting with the brain and then going down.

 

My immunologist feels that I may have Mast Cell Activation Syndrome (MCAS) based on my complete history of the last 30 years. He is also ruling out other hormonal imbalances and Mastocytosis hence the pint or two of blood and urine they are about to pull out of me.

 

We discussed the idea that this may be a combination of withdrawal and a previously un-diagnosed underlying immunological condition. It will be interesting to see what we find out once the testing is done.

 

I also ordered an Everlywell Food Sensitivity test kit so it will be interesting to see what that shows.

 

I will update again when I have more answers but it looks like the underlying problem I have been dealing with could very well be immunological not a problem with my brain. If that is the case and we can figure out what to do about it then it may make the withdrawal I am going through easier to manage. I hope so.

[FeralCatman]

I thought people would like to know that I have been sending the guidelines for withdrawal published by the UK Royal College of Psychiatry, as well as the articles I read regarding the UK NHS changing it's prescribing protocols for antidepressants, to all of my providers. I have had nothing but positive and appreciative feedback from all of them. My hope is that they will be interested enough to discuss these ideas with their colleagues and the word will spread. Now that this is becoming more mainstream I think it is important for us to educate our providers. My PCP has already discussed this with his staff and partner. He also has a sign on the entry way door that says 'No Pharmaceutical Representatives'. I think if we all started doing this it may help to spread the word even faster. 😉✌️😺😺😺😺

[FeralCatman]

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.