FeralCatman: recovering from Seroquel

[FeralCatman]

Here is another article that discusses the medical system finally recognizing antidepressant withdrawal as a serious and widespread problem. More reason to feel hopeful and that as time goes by fewer people will be thrust into the position that all on this website have been thrust into by taking these medications. Hope and help is finally on the way. 😉✌️😺😺😺😺

 

The article is titled:              "Antidepressant withdrawal – the tide is finally turning"

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8061160/

[Valerio]

On 3/20/2022 at 7:52 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.

Hi @FeralCatman!

Acupunture is helping a little.

I wish you get well/better soon!

[OldDodgy]

@FeralCatman

 

You describe  it very well. I had churning anx worst in the morning til I had been off a year. 
 

I hope it improves for you. I do self hypnosis if in real discomfort.

 

OD

[FeralCatman]

@Valerio I have started up with acupuncture again and I agree that it is helpful. So far it is the most helpful thing I have in my tool box. I also use vagus nerve exercises that help to calm things down. I posted a few links on this site if you want to check them out. They work for me.

 

@OldDodgy Good to know that others have experienced the same thing. Also good to know that it cleared up after a year. I have read in other places that it seems to take at least a year to really start to recover. Hopefully I am reaching the light at the end of the  tunnel instead of the light being a speeding freight train.

 

Thank you both for your input. I appreciate it 😉✌️😺😺😺😺

[FeralCatman]

So there is another bit of good news. I started wearing a Continuous Glucose Monitor Sensor again. I still have a pretty high sensitivity to glucose and am still clinically diabetic. However, my night time glucose is no longer spiking really high at 3 am. After my evening meal spike it drops down to about 110-120 and stays level all night until about 5 am and then starts to go up more like what would be expected. I am also getting fasting glucose readings below 120 and sometimes below 110 as long as I eat really well and stick to the whole food diet. I am also not getting massive spikes over 180 from my powdered milk that I put in my decaf coffee in the morning like I was when I first stopped the Seroquel. So all in all, small but seemingly continuous improvements after almost 8 months off the Seroquel. Healing in action. It is taking longer than I had hoped but this gives me motivation to continue the strict diet and to keep walking every day and over time it is looking like my metabolism should slowly continue to recover. I hope so. It would be nice to not be diabetic any more. Hopefully the anxiety bursts and gut issues will also start to resolve. I actually had a full 8 hours sleep the other night. Most nights I am up and down but that is also a sign of improvement.  I will post further updates as things change.

 

I have read a lot of posts on this site and have gained valuable insight into my own issues from other peoples experiences and from the articles that have been posted so thank you to everyone for sharing your experiences. 😉✌️😺😺😺😺

[OldDodgy]

@FeralCatman

I am so glad you posted !!!

On seroquel my HBIAC was heading in the wrong direction.  
Off seroquel it’s became well within the the normal range and improved further after stopping mirtazipine ! 
Thanks 

OD 

[FeralCatman]

@OldDodgyHow long off of the Seroquel did it take for you to really see significant recovery? I know everyone is different but mentally it helps to see other timelines.

[FeralCatman]

I am considering reducing my paxil starting some time this year. Hopefully that will help further reduce my weight and metabolic side effects. Still hemming and hawing when is a good time to start the reduction.

[Valerio]

6 minutes ago, FeralCatman said:

@OldDodgyHow long off of the Seroquel did it take for you to really see significant recovery? I know everyone is different but mentally it helps to see other timelines.

This informations also gives some hope. 

 

@FeralCatmanMay I take the opportunity to ask if you guys have ever felt an arrhythmia with a strange feeling in chest after taking quetiapine?

[OldDodgy]

@FeralCatman

 

I think they normalised with in 6 months. 
Good wishes 

OD 

[FeralCatman]

Good to know things went back to normal. I was on a much higher dose for much longer (Max 800mg for 16 years) so I imagine the recovery will be much slower in my case. Nice to see some progress though it's hard to have patience with this process sometimes.

[FeralCatman]

@Valerio I frequently had chest pain and pounding heart after taking my nightly Seroquel dose. It was very uncomfortable. I was told this was normal and not to worry. Over the years I was told a lot of things were not for me to worry about. I don't listen to them any more. All I can say is that even though I had those symptoms, I am still here. Was it normal? I don't think so. So glad I am off of the stuff even though I am still having issues. 

[Valerio]

40 minutes ago, FeralCatman said:

@Valerio I frequently had chest pain and pounding heart after taking my nightly Seroquel dose. It was very uncomfortable. I was told this was normal and not to worry. Over the years I was told a lot of things were not for me to worry about. I don't listen to them any more. All I can say is that even though I had those symptoms, I am still here. Was it normal? I don't think so. So glad I am off of the stuff even though I am still having issues. 

You're right! I will be sending  positive wishes for your recovery! 🌻

[FeralCatman]

@ValerioThank you. Kitty Prayers in return 😉✌️😽😽😽😽

 

[Pollyjay]

I was only on Seroquel ( 25 mg) for a couple of weeks before tapering. I only took a couple of pills - had racing heart and just hated the stuff. It scared me to death. Was afraid  to quit CT so iImmediately went to 3/4 of a pill for a couple of weeks. Now I'm down to about 5mg. But from the very first drop my belly hasn't been the same. Like you, lots of lower abdominal pain. Running to the bathroom multiple times - especially in the morning. Was unable to leave the house for a while.  I've been at this current dose for 10 days now and things have settled down a bit. I'm not sure at what point to jump off it. I'm also in the process of tapering Lunesta and  that is what I'm focusing on right now as the doc has added Ativan and want's me off the Lunesta ( had some amnesia problems )  I've only been on both drugs for a short time (early February/March butthe thought of jumping off quickly is so scary.

 

As for PAXIL. I tapered off that back in 2011. Was on it for about three months before tapering. I started at a 10 percent taper  but switched to five percent. It took a long time with some waves and windows  but once I was off it I had no noticeable withdrawal symptoms.  Had 9 wonderful years of normal. No anxiety whatsoever. I said I'd never go on any of these drugs again but was hit with extreme panic. anxiety after a combination of life events/losses of loved ones starting in October last year. It's like my CNS has been put through a shredder.  I tried for 3 months to get by without drugs but was at the point of being completely unable to function. Still not functioning well but much better than I was. Still some anhedonia, tremors, anxiety etc. Can't read or listen to music or work on any of my many hobbies. Praying that it will all come back soon. 

 

I hope you find yourself in  a much more normal state soon too, FeralCatMan!

[FeralCatman]

@PollyjaySorry to hear you are having such issues. As I have learned after a few decades on this planet, everything passes. It just takes time. So hang in there. It is good to know that you were able to get off of the paxil and have no noticeable symptoms afterwards. I am going to cut back to 5 mg from 10 mg and hold for a bit and see how I do. Hearing success stories gives me hope to keep moving forward with all of this. Antipsychotics really do seem to be the worst of the bunch. They are the most disruptive and have the worst long term effects from what I have read. Today I am 8 months and 1 day off of the Seroquel after over 15 years of ingesting that poison and since I am making small progress I hope to be fully clear of its effects some day.

 

I have been trying a low histamine diet to see if it helps. I tested the theory over the last couple of days by adding back in some cocoa powder to my nightly bowl of frozen blueberries / rasberries. Chocolate is known as a high histamine food. After only 2 days and 4 teaspoons I got jolted awake at 3 am last night with pretty bad anxiety and am getting the stabbing pain in my guts this morning. I have also experimented with half decaf / half regular coffee and the caffeine does not affect me like this so it can't be the caffeine in the cocoa. So, there is definitely something to what I have read about coming off of seroquel and going on a low histamine diet. It does seem to help quite a bit.

 

Best wishes and kitty prayers. 😉✌️😺😺😺😺

[OldDodgy]

 

@FeralCatman

 I absolutely agree that a low histamine diet is important especially for those of us coming off Quetiapine or Mirtazipine.. 

 

Been off them a while but remain intolerant of chocolate and caffeine even now. 

 

And sleep is so important!! 
 

I accepted 12.5 of Quetiapine to sleep from my psych with reluctance, but once I get back into a routine that’ll go too.—I got off it easily enough in 2019. It’s not a long term thing— as we discussed the impact on blood sugars before!  
 

Good wishes OD 

[JMac1234]

The way you describe the adrenaline surges is identical to what I experience. Thanks for sharing your story here -- I've read through it and it's incredibly encouraging to know other people going through similar circumstances.

 

I've also wondered about the anticholinergenic effect of Seroquel and what the effects coming off it might be. Have you tried tinkering with choline in your diet?

[Pollyjay]

14 hours ago, FeralCatman said:

@PollyjaySorry to hear you are having such issues. As I have learned after a few decades on this planet, everything passes. It just takes time. So hang in there. It is good to know that you were able to get off of the paxil and have no noticeable symptoms afterwards. I am going to cut back to 5 mg from 10 mg and hold for a bit and see how I do. Hearing success stories gives me hope to keep moving forward with all of this. Antipsychotics really do seem to be the worst of the bunch. They are the most disruptive and have the worst long term effects from what I have read. Today I am 8 months and 1 day off of the Seroquel after over 15 years of ingesting that poison and since I am making small progress I hope to be fully clear of its effects some day.

 

I have been trying a low histamine diet to see if it helps. I tested the theory over the last couple of days by adding back in some cocoa powder to my nightly bowl of frozen blueberries / rasberries. Chocolate is known as a high histamine food. After only 2 days and 4 teaspoons I got jolted awake at 3 am last night with pretty bad anxiety and am getting the stabbing pain in my guts this morning. I have also experimented with half decaf / half regular coffee and the caffeine does not affect me like this so it can't be the caffeine in the cocoa. So, there is definitely something to what I have read about coming off of seroquel and going on a low histamine diet. It does seem to help quite a bit.

 

Best wishes and kitty prayers. 😉✌️😺😺😺😺

thank you! Well the lower belly problems seem to have abated. I've had three good days now. So there is hope, FeralCatMan  Unfortunately I'm now plagued with acid reflux. I don't feel it so much in my stomach, just constant burping, but the pain is all in my back, between the shoulder blades. Everything I eat feels like it doesn't quite go all the way into my stomach. The pain is the worst though. Gaviscon isn't touching it.   I hope, like you said, it will pass. It's been six days now and I'm getting worried. I've had it before but never for this long. Have you had anything similar? I dread having to go to the doctor and be put on even more pills.

 

Praying you paxil taper will go smoothly!

[FeralCatman]

@JMac1234 It's good to be in touch with others who understand all of this since most people do not and there is no way to relate the experience to them so thank you for any input you have even if just moral support.

 

I have not fiddled with choline in my diet. I went to the low histamine diet due to the issues I had when I tried and failed to stop the Allegra after I stopped the Seroquel. I had another episode last night that I had to chew up some benadryl and give myself a bit of oxygen to get through it. Scary stuff. There are various theories as to what is happening as it may not be withdrawal related and I am working with my immunologist right now to try and figure things out. I just had a ton of blood work which is not all back yet so until I get a clearer picture of what is going on I don't want to change anything that I don't absolutely have to. That said, I will research dietary choline and cholinergenic rebound and see if I think that applies in this case. This is all so hard to figure out because I have multiple health issues as well including multiple autoimmune issues. So, one step at a time.

[FeralCatman]

@Pollyjay I have had that issue many times over the years. These meds do a number on your GI tract. I take Nexium which does seem to keep it at bay most of the time. The episodes for me always passed. Sometimes I have had to switch over to the BRAT diet for a bit to give my guts a rest and that always seems to help. A couple of times I switched over to Vanilla Ensure shakes several times a day and water for a couple of days to get everything solid to pass through and that also helped. Hang in there and glad I have people to chat with about this. I live alone pretty much in the middle of nowhere and so when things get bad it can get a bit scary even though most of the time I find living alone in the middle of nowhere to be ideal.

[FeralCatman]

@JMac1234I found a possible reason for why benadryl has been helpful with some of the severe symptoms I have experienced recently. I found an article which I posted under Scientific Journal Articles on this site. Here is the link.

 

https://www.survivingantidepressants.org/topic/26873-withdrawal-symptoms-and-rebound-syndromes-associated-with-switching-and-discontinuing-atypical-antipsychotics-theoretical-background-and-practical-recommendations/

 

In the article it says that benzodiazepines and anticholinergenic medication may be helpful when switching or discontinuing anti psychotics. Benadryl is an antihistamine with anticholiergenic properties. If what I have experienced is cholinergenic rebound and / or histamine rebound then benadryl would prove to be very useful for both.

 

This is not withdrawal advice for anyone. Just food for thought.

[FeralCatman]

Just wondering if anyone else has experienced anxiety like symptoms along with the other symptoms I have had that did not respond to anxiety medication like ativan but respond well to benadryl. If so I would love to hear what your experience was and what your solution ended up being. It seem like I have developed a nasty histamine intolerance or sensitivity. At the suggestion of my immunologist I am now taking Allegra twice a day to see if it calms things down in hopes that I won't have to keep using the benadryl.  We are still waiting on the truckload of blood work to come back. Any input would be appreciated.

[FeralCatman]

I took the second dose of Allegra last night. About 2-3 hours later I felt so much better and very relaxed. Still did not sleep well but this morning I feel just as relaxed as can be. Amazing the difference between yesterday morning and today. So that pretty much clinches it. I have a significant histamine related issue that was generating anxiety and agitation and lots of physical symptoms as evidenced by the effectiveness of benadryl and Allegra. So this adds to the theory that I have a histamine intolerance and possibly Mast Cell Activation Syndrome as my immunologist has suggested. The fact that it did not help the sleep issues makes me think that this is a good step in separating out what is still seroquel drug withdrawal and what is a possible long term underlying issue. The sleep issues are most likely due to the withdrawal since most people seem to have them for at least a year after stopping the drug and it has only been 8 months for me and the Allegra doesn't seem to help that. So, a ray of hope that I will now be able to feel better and be more functional. In combination with a low histamine diet my hopes are a bit higher now.

 

I have always had trouble with anxiety and whole body symptoms in the spring allergy season. Just never this severe. It's been a bit scary. So, perhaps some of this hypersensitivity to foods and the environment were caused or aggravated/worsened by the drug use. Just a theory but that seems to be what is happening. My hope is that in time this will also lessen but for now I have a seemingly workable solution. Just have to see how the next few days go. 🙂

[tsranga]

Just FYI, I am going through a similar journey post mirtazapine withdrawal and I am in my 4th year..  I definitely think that acetylcholine, histamine and norepinephrine are all neurotransmitters that are disregulated in withdrawal and one has to find ways to cope with the symptoms, and the most likely triggers. 

 

For me, food related histamine intolerance has improved significantly over the last 6 months, but I can never be certain about recovery, because most of my symptoms seem to be closely tied to the seasons and weather changes.  

 

I can definitely confirm that drastic temperature changes continue to be my biggest trigger for a flare-up, and it affects my temperature regulation, my gut (bloating, burping, reflux), my head (pressure, sinus pressure, blocked nose, post-nasal drip), and extremities (pain in joints - neck, shoulder, elbows, hip, wrists, paresthesia, and dry/clammy/itchiness). 

 

Acupuncture has been the biggest help in keeping the flares under control.  I am going to try some natural anti-histamines during a flare (curcumin, quercetin etc.). 

 

[FeralCatman]

@tsranga Thank you so much. That is very helpful to know. I think for me this may be a combination of withdrawal and a pre-exisiting histamine / Mast Cell issue. Many things that have happened over the years lead me to believe this has been going on at a lower level for a long time. That said I think the drug use and withdrawal took something that may at one point have been manageable and has made it into a bit of a monster. I tried several times to taper off of the Allegra and got very sick every time. In the beginning when I stopped it completely for a bit my BP dropped off to 80/50 and I started drifting into shock according to my ENT doctor and Immunologist. I have had to start carrying benadryl in a canister on all of my keychains and in both vehicles just in case. I have to admit it has been a bit scary.  Along with the food sensitivities the episodes trigger anxiety and mood episodes that are wicked. Soooo.......Allegra it is since the symptoms from this are much more than I can deal with for any length of time and it calmed the symptoms right away. I live alone and have to be at least semi functional. When off the Allegra I react to everything I eat, even a glass of water sets things off. Even on the low dose of 12 hour Allegra it was almost impossible to eat. I am responding to foods but also to the environment given I have a known mold sensitivity so there is immune system involvement here as well hence the MCAS possiblity. Right now everything has melted and it is warming up so on windy days I have to wear a mask outside to keep the exposure to a minimum. It is very hard to know how much is pre-existing and how much is withdrawal but the information you provided is very helpful. It is good to know that the food sensitivities are improving. That gives me quite a bit of hope so thank you for that. I will post updates from time to time and if you have any input I would very much appreciate it. 😀✌️😺😺😺😺

[FeralCatman]

@tsranga Additionally, in researching my immune deficiency I learned that the immune system and nervous system communicate both internally and with each other using the same neurotransmitter chemistry. There are receptors in both systems. So, you cannot modulate any of these chemicals without affecting both systems. Perhaps altering neurotransmitter chemistry causes a cascade effect which alters MAST Cell function and sensitivity. From what I have read about Mast Cell Disorders and Mast Cell Activation Syndrome (MCAS) the symptoms of sensitivities during withdrawal and recovery are nearly identical to MCAS in most respects. There is no proof of this that I have found yet but it makes sense from a quantitative analysis standpoint. Drug induced MCAS???? I will be continuing my ongoing research binge and if I find anything that links the 2 I will definitely post it here.

 

Take care and thank you again. 😀✌️😺😺😺😺

[tsranga]

8 hours ago, FeralCatman said:

@tsranga Additionally, in researching my immune deficiency I learned that the immune system and nervous system communicate both internally and with each other using the same neurotransmitter chemistry. There are receptors in both systems. So, you cannot modulate any of these chemicals without affecting both systems. Perhaps altering neurotransmitter chemistry causes a cascade effect which alters MAST Cell function and sensitivity. From what I have read about Mast Cell Disorders and Mast Cell Activation Syndrome (MCAS) the symptoms of sensitivities during withdrawal and recovery are nearly identical to MCAS in most respects. There is no proof of this that I have found yet but it makes sense from a quantitative analysis standpoint. Drug induced MCAS???? I will be continuing my ongoing research binge and if I find anything that links the 2 I will definitely post it here.

 

Take care and thank you again. 😀✌️😺😺😺😺

Yes I am aware of this connection every day :).. 

 

I have a peculiar problem - some sort of autonomic dysfunction that seems to flare up with drastic temperature changes. The 3 areas it affect me are my sinuses (they are very sensitive to change in air temperature and can close up when exposed to cold drafts in a warm environment), my gut (feels gastroparesis - takes a while for gas to move through the GI tract, and causes reflux, bloating, burping, and sudden bouts of multiple BMs at night)., and my legs (mostly below knees -paresthesia. cold feet. itchy etc.). All three units - head, gut and legs/hands seem to be connected in a strange way. Moving my legs/hands can move my gut, and moving my gut clears/opens up my sinuses.. All of this appears to be controlled by heat/cold exposure.  The worst flares are when there is a drastic variation in heat and cold eg. hot sun with cold wind, warm indoors with cold AC etc. Most of this acts up only when lying down, so there appears to be a postural component to all of this, and causes temperature dysregulation across the body.

 

I am right now dealing with a 94 degree day in the middle of spring. and it's supposed to dip into the 50s in a couple of days.  

 

I am running out of options to cope with these flares..

 

 

 

 

 

[FeralCatman]

6 hours ago, tsranga said:

Yes I am aware of this connection every day :).. 

 

I have a peculiar problem - some sort of autonomic dysfunction that seems to flare up with drastic temperature changes. The 3 areas it affect me are my sinuses (they are very sensitive to change in air temperature and can close up when exposed to cold drafts in a warm environment), my gut (feels gastroparesis - takes a while for gas to move through the GI tract, and causes reflux, bloating, burping, and sudden bouts of multiple BMs at night)., and my legs (mostly below knees -paresthesia. cold feet. itchy etc.). All three units - head, gut and legs/hands seem to be connected in a strange way. Moving my legs/hands can move my gut, and moving my gut clears/opens up my sinuses.. All of this appears to be controlled by heat/cold exposure.  The worst flares are when there is a drastic variation in heat and cold eg. hot sun with cold wind, warm indoors with cold AC etc. Most of this acts up only when lying down, so there appears to be a postural component to all of this, and causes temperature dysregulation across the body.

 

I am right now dealing with a 94 degree day in the middle of spring. and it's supposed to dip into the 50s in a couple of days.  

 

I am running out of options to cope with these flares..

 

 

 

 

 

@tsranga Something tells me that your problems are not that peculiar. Most people, especially the medical community, have simply not made any of the needed connections yet. I have had similar sounding issues over the last 8 months. The extra Allegra stopped the worst of it in its tracks. I still have the sensitives and so far need to be careful but it is making things much more manageable.

 

I looked up drug induced MCAS as well as 'How Do Neurotransmitters Affect Mast Cells' and found this journal article.

 

https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-020-02029-3

 

It turns out that Mast Cells are not just activated by environmental factors. Mast Cells work hand in hand with many different neurotransmitters including dopamine and GABA both of which can cause Mast Cell expression which I assume can contribute to sensitivities if there is too much or too little of either of them or of any other neurochemicals they are sensitive to. So, while your neurochemistry is sorting itself out after coming down off of one of these medications it can cause the Mast Cells to express themselves inappropriately and release their mediator chemicals which include histamine, prostaglandin, and tryptase (there are 200+ chemicals which Mast Cells release which are termed Mast Cell Mediators) which then trigger the stress response and funky reactions. Since neurotransmitting chemicals are multi-functional and the body can actually convert chemicals from one to another and back again it means to me that if you modulate or block one of them it will affect all of them in a cascade effect and this cascade could include faulty signals to Mast Cells to then cause them to express themselves and release their mediators which then cause sensitivities and weird reactions.

 

Here is a link to a Mast Cell Disease website that covers medications used in the treatment of Mast Cell disorders. This information may apply to what some in withdrawal are going through. This is not medical advice. Just a hunch.

 

https://tmsforacure.org/treatments-2/medications-treat-mast-cell-diseases/

 

Here is a link to the Institute for Functional Medicine that has a list of natural antihistamines and Mast Cell Stabilizers.

 

https://www.ifm.org/news-insights/fight-inflammation-stabilize-mast-cells-naturally/

 

Additionally, not on the list, vitamin C is a natural antihistamine and helps build the enzyme diamine oxidase DAO which helps to break down and metabolize histamine. Quercetin is a natural antihistamine and is also a Mast Cell Stabilizer.

 

I really am wondering if this is a drug use / drug withdrawal induced Mast Cell Expression problem and treating it as such may provide some relief while the body reacquires natural homeostasis. The only thing I wonder about is if taking an antihistamine inhibits the recovery process.

 

In my case the reactions were actual grade 2 anaphylaxis requiring benadryl which is what some Mast Cell patients carry as a rescue medication so I am going to stay on the Allerga for now to hopefully prevent that from happening again and protect myself until I speak to my immunologist and gather more information. I figure if I had to go from Seroquel down to OTC Allegra that is certainly a big step in the right direction though this may end up requiring a long taper down off of the Allegra, perhaps even longer than Seroquel, but oh well. At least you can get it without a prescription and have as much as you want on hand and can go at your own pace. It is also sold in a liquid which is very helpful and easy to get.

 

 

[tsranga]

@FeralCatman Thanks. This is the most frustrating aspect of our condition. No professionals who can make a connection. 

 

In my case, pre-mirtazapine, and when I was smoking, I never had any issues with my sinuses. Everyone around me had frequent colds. 

 

I stopped smoking in 2017, and that was the start of my physical symptoms starting with the GI flares at night - burping and bloating all night starting at 11-11:30PM like clockwork.  Lost 20lb on 3 weeks and was put on mirtazapine. That is when I started developing new symptoms, mainly around breathing when falling asleep, stuffy sinuses and sinus pressure. Took an allergy test which showed I was allergic to pet dander and grass pollen.  Bear in mind I had lived with dogs, and spent most of my weekends in grass fields playing.

 

It's only after I stopped mirtazapine CT that I have symptoms of autonomic dysfunction. 

 

Prior to mirtazapine, I had not taken any sort of drug (I avoid Tylenol as well) all my life. The only chronic issue was GI issues ( burping, bloating and incomplete evacuation), that other than spending more time than necessary in the toilet, didn't affect my functioning.

 

I went through the histamine / mast cell research and I found that I wasn't reacting typical of a mast cell issue. 

 

My main symptom pattern these days is triggered by drastic temperature changes.  It's a very predictable pattern in most cases - the air in the gut gets stuck, causing visceral pain, and when I lie down, the gut starts to move - rarely during a flare, and quickly when I am not. When it's stuck, I start getting more burps, reflux until eventually the air moves downwards and is expelled as gas. During this time, my temperature regulation is poor - cold extremities, upper body heat, sensitive to cold/hot air drafts, and this is accompanied by sinus pressure/stuffy sinuses and leg paresthesia. The most curious aspect of this is when the gut starts moving again, my sinus will clear up. Also when I move my legs and hands, my gut sometimes will begin to move. 

 

All of this seemed to indicate some sort of blood circulation (vasodilation/vasoconstriction) issue. Eventually I found that all of this is connected to the autonomic nervous system and the vagus nerve. 

 

 

I was diagnosed with a vagus nerve disorder last year but an autonomic specialist, but he discounted my belief that the antidepressant caused/aggravated it.

 

I feel that I may have had some pre-existing dysfunction (given my history of syncope with heat/dehydration), deviated septum, and my GI issues could be a manifestation of dysfunction. Going off nicotine (which mimics acetylcholine- that is core for ANS functioning) and using the antidepressant (which possibly is also anticholinergic) is the most likely cause of my continued issues.

 

I can't do much about weather changes unfortunately - hopefully my body gets more resilient and heals with time.

 

 

 

 

[FeralCatman]

@tsrangaIt is very difficult. It's all theorizing and guesswork. In my case when I joined the Navy and volunteered for the Submarine Service I was healthy as a horse. They test you to death before you get accepted so I had no pre-exisitng conditions prior to being medicated. All of my health issues started around the same time I started the Seroquel. I was told at the time it was my diet and lifestyle. As always in modern medicine and especially psychiatry, blame the patient not the meds.😠

 

It's funny you mention (or not) your sinuses. When I was on the higher doses of Seroquel my sinuses were constantly swollen and breathing was difficult especially at night after I took my dose. Also when I am having an episode my circulation also becomes an issue as does my gut motility and body temp regulation. Everything I have read about histamine intolerance and MCAS matches up with these symptoms but who really knows.

 

Currently I am waiting for a 24 hour histamine test to come back along with some other blood work. If my histamine level is high then things lean towards a Mast Cell issue but if they are normal then things will lean towards a hypersensitivity. Unfortunately I cannot safely stop the antihistamines long enough to do follow up allergy testing and see what is going on as I had hoped to do. Hopefully my ENT doc and my Immunologist can help me figure some of this out. I am also going to be seeing a dietician that specializes in this type of stuff so I am hoping she can help me out.

 

As for the comparison to Mast Cell disease it is only a theory but on the surface it lines up, at least in my case. Whether it was pre-existing to Seroquel or induced by Seroquel Withdrawal is difficult to know other than everyone else seems to be going through some variant of this so the symptoms line up..

 

In the mean time the antihistamines are keeping me comfortable and out of the anaphylaxis zone which is important since the nearest town with a hospital is half an hour away and my town only has a volunteer fire department so I can't afford to do anything too radical.

 

Take care and keep posting. We all learn a little bit of what we need to know each time we interact. Eventually the needed picture will come into focus for each of us based on what we are learning here. I know this site has been my best resource so far.

 

🙂✌️😺😺😺😺

[FeralCatman]

@tsranga I found a member on this site who is very knowledgeable about post withdrawal sensitivities, histamine intolerance, etc. Here is a link to her profile.

 

https://www.survivingantidepressants.org/profile/334-giak/

 

She also has a blog, here is the link.

 

https://beyondmeds.com/

 

I am finding lots of valuable information and answers that neither I or my providers have found and I feel it will probably be my next most useful resource other than Surviving Antidepressants.com

 

[FeralCatman]

I have an Amazon Radio station that I am now addicted to and find to be extremely calming. It's called 'Neon Chill'. Having a down day today on this rainy Saturday and have been curled up with a cat on the couch listening to this and enjoying a light show put on by a Turkish Lamp I bought while in NM. Here is a link to the station.

 

https://amazon.com/music/player/playlists/B07FY9STL6?marketplaceId=ATVPDKIKX0DER&musicTerritory=US&ref=dm_sh_iWYe7GGzQ8cNiNx1tX4Ol6BT9

 

[FeralCatman]

From time to time I will be posting a simple 'Thank You' for everyone who comes here and posts their experiences. We are all helping each other and are all lucky we have this place to come to. I am grateful for it. So.......

 

[FeralCatman]

So I have an update on what is going on with all of these reactions I seem to have developed since coming down off of Seroquel. At it turns out, since Seroquel is a powerful antihistamine, it is sometimes used off label to treat Mast Cell Disorders including Mast Cell Activation Syndrome (MCAS). TriCyclic antidepressants are also sometimes used due to their H-1 blocking effect.  Here is link that talks about Quetiapine being used for MCAS treatment.

 

https://www.mastattack.org/2014/10/mcas-treatment/

 

Based on symptoms that have occurred over the last 30 years in combination with what is happening now it is looking like stopping the Seroquel unmasked the underlying MCAS diagnosis and trying to stop the Allegra thew me into overload which is why my BP dropped so low. The nurse at the ER last night told me that my vitals and symptoms were indicative of an inflammatory response to a trigger. Taking away the antihistamine has enabled these wicked flare ups that I have been having and it explains why Benadryl is working as a rescue medication. It also explains why Allegra once daily was not enough to keep things in check as most MCAS patients require at least 2 daily and most use a combination of more than one 2nd generation antihistamines. I had to use benadryl last night before I went to the ER to get a serum Tryptase blood test to try and confirm mast cell involvement while I was symptomatic. Some of this may be withdrawal related but it is looking like most of it is unprotected exposure to environmental triggers. The good news is that it is very treatable with the right medications most of which you can buy OTC in the USA.

 

I found this article and sent it to my psychiatric provider. She has already found 2 of her patients responded well to benadryl and hydroxyzine but not other medications and has referred them out to immunology as their issues may be MCAS and not brain derived. She now includes tracking of physical and mental symptoms in hopes of better serving her patients. I hope she is able to identify other issues and spare some of her patients the pain we have all gone through getting off of these meds.

 

https://www.psychologytoday.com/gb/blog/holistic-psychiatry/201907/mast-cell-activation-syndrome-alert-psychiatrists

[FeralCatman]

Now that I have done all of this 'Thinking Allowed'  and have a couple of variables identified I have a several questions for anyone / everyone.

 

1. Right now I have to use the antihistamines for safety/functionality reasons. Allegra only binds with peripheral receptors not with the CNS so it is not directly affecting the CNS. It seems that calming the body helps to calm the CNS. Benadryl I rarely use as a rescue medication but it does bind with both peripheral receptors and the CNS. Is using it going to upset the CNS recovery process? It's the only thing I am truly worried about right now.
2. I have seen the term 'Kindling' but need a link which describes that so I can understand it.
3. In addition to food sensitivities I also seem to be very sensitive to the environment during allergy season even on the Allegra. Still trying to identify specific triggers which is proving to be very difficult.  I cannot spend time outside right now without an N95 mask. Annoying but oh well as I can still walk 3 miles in the mask with no issues. Has anyone else had a problem with environmental sensitivity issues? Issues with light and sound passed pretty quickly for me last year.

 

As much as possible I am staying away from anything other than a simple whole food diet, water, decaf coffee, my listed meds, fish oil, vitamin pill, vitamin C, and a probiotic. I never eat anything I don't make myself anymore. I get as much exercise as I can. I had considered a naturopath but all they seem to want is to sell supplements and expensive tests that I know are bogus and insurance is reimbursement only they do not cover directly and I am not really interested in supplements. I am going to a nutritionist starting Friday to make sure what I am eating is well balanced and giving me what I need and to address any possible gut healing issues as suggested by Altostrata. Other than what I have mentioned about the possibility of MCAS I am largely trying to continue gathering information to keep building up a complete picture of my situation and am changing as little as possible so as to leave my CNS alone and let it heal.

 

Any thoughts on this would be greatly appreciated. 

 

I don't log on or post daily as sometimes reading what other people are going through can be very distressing for me as can even simple interactions with people even on line so I log on when I am up to it. I have a lot of anger about all of this and it bothers me that so many people have had this done to them. Nothing to do with anyone on this site. That's all me and what I can deal with every day.