FeralCatman: recovering from Seroquel

[FeralCatman]

@ChessieCat I will. I am not gone. Just taking time to process and do other things for awhile. I will be checking my account every few days probably but my notifications are turned off right now.😉✌️ 😺😺😺😺

[Ariel]

Hi @FeralCatman

Just to say thank you for your recent update and 

CONGRATULATIONS on your 1-year zero-versary and all your improvements!!

You work so hard and have come so far, bravo! 

It is wonderful to read of your improvements and where you're at today.

Thank you so much for all that you contribute to the community. 

Wishing you a relaxing break and best of luck to you on your continuous healing journey, 

Sending hugs <3

A. 

[FeralCatman]

UPDATE

 

I forgot to add 2 symptoms that I had during tapering and for a short time after during withdrawal.

 

1. Blood Sugar Crashes - Gone
2. Sudden drops in blood pressure - Gone

I also found on this site a terrific explanation of what happens in our brains during tapering and protracted withdrawal. Much better than my computer update comparison. It is posted on this site but I will re-post it here. Definitely worth the read as it is a bit long.

 

 

[FeralCatman]

@ChessieCat I would like to start a thread where I can post links to the material safety data sheets for each medication. I thought it would be useful to have them all in one thread where they can be used as a reference if needed. They say wonderful things like 'Toxic-Do Not Swallow' and 'Toxic To Aquatic Life-Do Not Discharge Into The Environment'. They also include physical and chemical properties, first aid, toxicological data, carcinogenic data, etc. Where would be a good place on this site to do this?

[IronHamMk76]

Hi, just wanted to say that I've been lurking on this site for about a month now. Yours was the first account that popped up, and it has been such a mind-opening read. Just wanted to swing by, say thank you for your posts, and congratulate you on your successes (with much healing to come). Take care.

[FeralCatman]

On 8/6/2022 at 8:04 AM, FeralCatman said:

@ChessieCat I would like to start a thread where I can post links to the material safety data sheets for each medication. I thought it would be useful to have them all in one thread where they can be used as a reference if needed. They say wonderful things like 'Toxic-Do Not Swallow' and 'Toxic To Aquatic Life-Do Not Discharge Into The Environment'. They also include physical and chemical properties, first aid, toxicological data, carcinogenic data, etc. Where would be a good place on this site to do this?

It has been pointed out to me that listing all of the MSDS's for all of the psychiatric medications would be an extensive and mind numbing job. In thinking about it I agree and am not really up to that task. That said, if you are interested, just type in 'MSDS for *******" whatever drug you want to learn more about and you will get multiple search results for each drug. I found them to be very interesting reading and very motivating to continue down the road of getting off all of these meds. Here is an example of and MSDS for Seroquel from Astra Zeneca

 

https://www.astrazeneca.com.au/content/dam/az-au/Material Safety Data/2020/MSDS_Seroquel Tablets_SDS 1010_01.2020_v4.1.pdf

[FeralCatman]

I just posted this regarding herbs I use in my meals that have many supposed benefits for people in withdrawal including for gut issues and neurological issues. Here is a link to that post.

 

 

[FeralCatman]

I just posted this regarding the effects of taking chronic medications on your septic system. It also mentions the effects of medications being discharged into the wastewater stream on aquatic life.

 

 

[FeralCatman]

UPDATE The month of August is so far starting out better than July. I discovered that the amount of salt I should be taking in that was recommended by my nutritionist was the total daily intake. I did not account for what was already in my food. I suspected that my nightly kale chips with salt may be contributing to the night time urinary problems so I cut them out and started measuring out my daily salt ration each morning. 1/8 tsp is about 1500 mg which is what I should be adding daily to get the US RDA amount of sodium. After the first day cutting back my night time urinary frequency and urgency at night went down and so did the adrenaline surges and now I am sleeping 2-3 hours a night between needing to urinate instead of every hour and am getting 6-7 hours of broken sleep. It will be interesting to see if this holds out over a longer time span. I also downloaded and started using a diet app. It is called 'My Net Diary'. The basic version is free. The version that gives you the full nutrition data is a subscription. I really like it. I paid for the year ($49 - there are certainly more cumbersome and time consuming ways to do this but I prefer this app) and looked over what I was eating and was amazed at how good a simple whole food diet is at providing you with everything you need. All I seem to be short on is calcium,since I am dairy free right now, and magnesium. The few other things that are slightly short are more than made up for with a simple multivitamin and I already supplement magnesium, Vitamin D3, and Fish Oil so the only thing I will be adding will be the calcium supplement that I have asked my nutritionist for a recommendation for. What I have learned is that if your diet is right you really do get everything you need from what you eat and unless there is a tested deficiency present you really shouldn't need too much in the way of supplements, at least nutritional supplements. Having an app like this allows you to see everything you eat and where you are deficient and if you are willing to make the changes you can tweak your diet and avoid most supplements which is what I plan to do. Of course it all depends on what your body can tolerate so there will be more trial and error but it is certainly the healthiest (and cheapest) way to go. When it is done I will be posting a diet chart that accompanies my 'A Path To Healing' chart with an optimized diet for the conditions listed. Still working on the critique.

 

Another symptom that has gone away is carbohydrate cravings. They are completely gone. I no longer crave sugary snacks and pasta and bread. I am now indifferent and would rather just have an apple.

 

I have also found that I cannot eat 3 meals a day. It causes me significant gut distress. I backed down to 2 meals a day which had been my routine for years with a very light snack in the middle and the gut distress is gone. My bowel habits are returning to a more regular schedule as well. My theory is that, at least for now, my gut motility is slower than it should be and eating 3 meals a day is too much for my body to move through my digestive tract. I attribute this to withdrawal induced ANS dysfunction that hopefully will improve over time. I also added ginger daily to my morning electrolyte drink that I start the day with. It is a splash of organic apple juice, a splash of organic cranberry juice, a splash of lemon juice, a small pinch of salt, 1 tsp of psyllium fiber husk and now 1/8 tsp of crushed ginger powder. Ginger is supposed to be good for improving gut motility. We shall see over time if it helps.

[IronHamMk76]

Hi, Feral! Quick question about cooking with herbs. I have boiled chicken for lunch and dinner, and add 1/4 tsp oregano to the water each time. Is that an effective way to incorporate this spice into my diet, or nah?

 

As for salt, I use a brand called Redmond Real Salt (ancient fine sea salt). 1/4 tsp = 530mg sodium, which I use in each of my three daily meals (I feel you on the gut distress thing! I'm just worried to eat too little/lose too much weight at a time, so I stretch out the eating part over 45 minutes to an hour. But I don't want to highjack your topic). My diet is NSA foods, so that should be an appropriate amount to use? 

 

Thanks for your continued updates; you really are a wealth of knowledge & insight, and collecting all your posts here really helps me to learn without being overwhelmed by the numbers/sizes of the forums.

 

Take care!

[Ariel]

@FeralCatman

Thank you for your update and the many great posts!

 

3 hours ago, FeralCatman said:

All I seem to be short on is calcium,since I am dairy free right now, and magnesium. The few other things that are slightly short are more than made up for with a simple multivitamin and I already supplement magnesium, Vitamin D3, and Fish Oil so the only thing I will be adding will be the calcium supplement

 

I am not an expert but would like to share some thoughts as well as my experience with calcium supplementation. 

It's my understanding that it is possible to get one's calcium needs met through a whole foods diet even if one is dairy-free (as I am, too). 

Have you done tests to check your actual calcium levels, or are you basing your conclusion about being short on calcium from the theoretical nutritional info as provided by the app or elsewhere?

 

Vitamin D increases calcium absorption. Since you are already supplementing with Vit-D, this is an important relationship to keep track of. 

If you're eating plenty of dark leafy greens such as kale, broccoli, and cabbage, in conjunction with Vitamin D supplementation you may be getting perfectly adequate amounts of calcium. 

 

Taking calcium supplements along with Vitamin D can potentially put one at risk of hypercalcemia, a very unpleasant condition that comes with considerable health risks, incl. kidney stones. I believe this happened to me at one point when I was taking both calcium and Vit-D supplements. I started noticing specific symptoms, tracked them and looked them up; what I was experiencing in my body fit all the diagnostic criteria for hypercalcemia. I immediately discontinued the calcium tablets and the symptoms subsided. I did not undergo any medical testing for this at the time (it would have taken many weeks to get a GP appointment, get tested, and wait on results), so I cannot be absolutely certain of what was going on, but I believe I experienced fleeting hypercalcemia. 

 

At any rate, this experience taught me about the interaction between Vit-D and calcium absorption and I have been mindful of this ever since. Personally I would not take calcium again unless I knew for sure that I was deficient, and I would research or check with a knowledgable professional beforehand about Vit-D levels as well as potency of both calcium and Vit-D supplements and their interaction. There may be some combinations that are within a safer range and others that are riskier. 

 

You said it best:

3 hours ago, FeralCatman said:

What I have learned is that if your diet is right you really do get everything you need from what you eat and unless there is a tested deficiency present you really shouldn't need too much in the way of supplements, at least nutritional supplements.

 

I don't know the app you're using and maybe it is indeed sophisticated enough to take interactive dynamics and bioavailability into account. In my experience most apps and nutrition calculators rely on static data of individual foodstuffs and don't allow for more dynamic analysis of how our bodies are actually utilizing the food we eat. I imagine a skilled nutritionist may provide this insight, but I've never been to a nutritionist so I don't know. 

 

Anyway, just some thoughts, hope you don't mind my sharing.

 

You're awesome and you're doing an exemplary job navigating WD.

I trust this next stage will go well for you, too. 

Good luck with everything and I look forward to following along. 

Sending hugs and healing vibes,

A.

 

[FeralCatman]

@IronHamMk76  I'm glad my thread has been helpful to you. As with everybody here I am constantly learning. For instance you just taught me to look at the nutrition data on the salt and it gives you the amount of sodium per quarter teaspoon. So that changes my equation because I didn't think to do that and all I had to do was turn the package around the other way. So I am actually not getting enough sodium but too much sodium at night is a problem so I'll need to have more earlier in the day. So thank you for making me think of that.

 

As far as the oregano goes I don't know if there really is one good way to eat it. I know people make tea, they use dried oregano, fresh oregano etc. so you would have to look up different ways to use it since I am new at it. I guess the dried oregano is more concentrated but as long as it gets into your system one way or another it should be helpful and at least won't hurt. I have fresh oregano growing on my deck in the summer and then I bring it into my living room in the winter so I just pick off a few leaves and throw it into whatever I'm going to eat. The same goes for the basil and the Rosemary. I don't make anything very complicated I try to keep things simple so I figure as long as I eat it it will help. I also grow stevia to use as a sweetener. I've gotten quite a bit out of the same two plants. When I get to be about a foot and a half tall I snipped them down low and hang the leaves up to dry. Once they are dry I crush them up into a powder and then put them into a mason jar and water in the refrigerator for a few days to steep. Once it is sweet I strain out the solids and put the water into ice cube trays and keep it in the freezer. Works well in herbal tea and decaf coffee once I get back to drinking that again.

[FeralCatman]

14 minutes ago, Ariel said:

@FeralCatman

Thank you for your update and the many great posts!

 

 

I am not an expert but would like to share some thoughts as well as my experience with calcium supplementation. 

It's my understanding that it is possible to get one's calcium needs met through a whole foods diet even if one is dairy-free (as I am, too). 

Have you done tests to check your actual calcium levels, or are you basing your conclusion about being short on calcium from the theoretical nutritional info as provided by the app or elsewhere?

 

Vitamin D increases calcium absorption. Since you are already supplementing with Vit-D, this is an important relationship to keep track of. 

If you're eating plenty of dark leafy greens such as kale, broccoli, and cabbage, in conjunction with Vitamin D supplementation you may be getting perfectly adequate amounts of calcium. 

 

Taking calcium supplements along with Vitamin D can potentially put one at risk of hypercalcemia, a very unpleasant condition that comes with considerable health risks, incl. kidney stones. I believe this happened to me at one point when I was taking both calcium and Vit-D supplements. I started noticing specific symptoms, tracked them and looked them up; what I was experiencing in my body fit all the diagnostic criteria for hypercalcemia. I immediately discontinued the calcium tablets and the symptoms subsided. I did not undergo any medical testing for this at the time (it would have taken many weeks to get a GP appointment, get tested, and wait on results), so I cannot be absolutely certain of what was going on, but I believe I experienced fleeting hypercalcemia. 

 

At any rate, this experience taught me about the interaction between Vit-D and calcium absorption and I have been mindful of this ever since. Personally I would not take calcium again unless I knew for sure that I was deficient, and I would research or check with a knowledgable professional beforehand about Vit-D levels as well as potency of both calcium and Vit-D supplements and their interaction. There may be some combinations that are within a safer range and others that are riskier. 

 

You said it best:

 

I don't know the app you're using and maybe it is indeed sophisticated enough to take interactive dynamics and bioavailability into account. In my experience most apps and nutrition calculators rely on static data of individual foodstuffs and don't allow for more dynamic analysis of how our bodies are actually utilizing the food we eat. I imagine a skilled nutritionist may provide this insight, but I've never been to a nutritionist so I don't know. 

 

Anyway, just some thoughts, hope you don't mind my sharing.

 

You're awesome and you're doing an exemplary job navigating WD.

I trust this next stage will go well for you, too. 

Good luck with everything and I look forward to following along. 

Sending hugs and healing vibes,

A.

 

@Ariel I certainly don't mind the sharing so no worries. We are all learning here. The app I have just uses the data on the labels as posted so it is only an estimate. I think all of them are like that for the most part unless you want to pay a lot of money to get something that a nutritionist might use.  I still have to go through all of my blood work to see what is what and will bring all of this up when I talk to my nutritionist next week. The low calcium was just based on the app data so the picture is currently incomplete. If I can get away with it I would rather not take another supplement and there may be other very low dose options or food options that I can try. My guts are starting to tolerate other foods again so I am just going very slowly right now as I don't want to upset the apple cart. Going back to 2 meals a day with a snack in between has been a huge help even though it goes against standard advice. I am also starting to slowly reduce the Allegra again. Much slower than before so I don't want to do too much at one time. Mostly I want to make sure my diet is fully optimized and then I will stick with it until I get off of the Allegra and Metoprolol.

[rmce72a]

Hi Catman, 

   Thank you for all the information you provide. You have really done your homework! IYou responded to me once when I asked if it is ok to continue taking Clarinex 5mg through my withdrawal, and you explained about histamine, etc. which was very helpful. I am still taking the Clarinex. 

 

I was also interested to read your info about metoprolol. I had been taking 25 mg twice a day prescribed for heart palpitations although all my cardiac tests have been normal since starting it 4 years ago. Last year when I developed tinnitus, I read that beta blockers can cause it, so I just started taking one pill a day, then half. This March I stopped it altogether which the doc said was ok since my BP is ok (as it always has been.)

 

Looking back, I think that when my Effexor pooped out 3 or 4 years ago and I began having all kinds of physical symptoms (dizziness, depression, panic attacks, heart palpitations, bowl trouble etc.) I think I was actually in a kind of withdrawal since Effexor was no longer working properly. Then when I was prescribed metoprolol for the palpitations instead of looking at the whole set of symptoms and recognizing them as WD, I was taking yet another drug I didn't need.

 

I am at 73mg down from 75 over 12 weeks and take only Clarinex. I don't react well to supplements, so I am not taking any. I tried magnesium but it only worsened my symptoms. Sometimes I chew a third to a half of a chewable multi-vitamin because my diet is so limited that I know I am not taking in enough nutrients. I don't drink caffeine nor do I eat sugar or gluten. I eat potatoes, beef, baked chicken, green beans, gluten-free bread, pasta, and crackers. I also eat spaghetti sauce, lots of oatmeal and eggs, and soy-free margarine. That's it. I can't tolerate fresh fruit or vegetables (stomach).

 

Any advice or suggestions you might have, I would welcome. You are so knowledgeable. Thank you and I hope you are doing well.   Rebecca

[FeralCatman]

@rmce72a Glad I've been able to be helpful. However, please remember I am no expert and am still learning the hard way just like everyone else. Also, what I do for myself may not work for you and all I can do is to let you know what I have found worked for me. It may help you or it may not. I also have a nutritionist I am working with who is very helpful as well as my acupuncturist and a good PCP so they get some of the credit as well.

 

As far as vitamins go my nutritionist recommended 'Nature Made' brand because they have no additives that may cause reactions. She uses them with her Mast Cell and Histamine Intolerance patients. Read the label on the vitamins and if there are any added colors you may want to seek out a different brand. Vitamins don't need food coloring. As I have learned food coloring does not get digested. They get attacked by your immune system as a toxin and get processed as a toxin and excreted. Granted it is a very weak toxin that most people tolerate fine but with a stressed out nervous system you don't need to add insult to injury by putting added stress on your immune system which will then of course add stress to your nervous system. Every little bit counts in our case.

 

As far as the Effexor goes it looks like you may just need to hold where you are for awhile and let things settle down and stabilize. It's hard not to want to push things and keep going but in the end it can just make things harder on you if you push and the whole process will just get extended as will the misery of it all. I have learned this the hard way. Even right now with reducing my Allegra my urge to rush is very strong because I want this crap out of my system but I keep my foot on the brake all the time and keep it slow.

 

As far as diet goes, late last year I had blood tests done for as many vitamins and minerals as is possible. I added those in to recent blood work. All I am short on is Vitamin D and Magnesium. Everything else was in specification including sodium, potassium, calcium, iron, copper, etc. So, in my case taking a multivitamin is overkill but I do it anyway because I tolerate it just fine and it makes up for any of the dietary deficiencies my diet app picked up on. Other than that I take magnesium and Vitamin D and then I also take extra Vitamin C which addresses the DAO deficiency. If possible you may want to ask for vitamin and mineral testing so you can see where you are really at with respect to your diet. It's really the only way to know, everything else is just a guess. You may actually be fine with what you are doing. That said, if you decide to hold the taper for awhile you may want to try adding in a few well cooked vegetables. Currently my suppers are boiled only because it is supposedly the lowest histamine way to cook and I make sure things are thoroughly cooked to go easy on my stomach. It cuts back the nutrients a bit but it's the best I can do right now. It seems to help. When I can go back to steamed vegetables I will. Baby Kale is excellent and packed with nutrients, broccoli is excellent as a one stop shop for nutrients, beets are excellent. Here is a link to nutrient dense vegetables.

 

https://www.healthline.com/nutrition/14-healthiest-vegetables-on-earth#TOC_TITLE_HDR_15

 

Unsweetened applesauce may be tolerable for you. My snack during the day right now is some frozen blueberries mixed with unsweetened applesauce and a handful of pistachios.

 

You could also buy a bag of frozen butternut squash and cook one cube and see if you can tolerate that. It will be all trial and error but there is probably at least one thing on the list you could find that you tolerate to help with a nutrient boost.  Pre biotic foods are also good for digestion. Here is a list.

 

https://www.healthline.com/nutrition/19-best-prebiotic-foods#The-bottom-line

 

Margarine is usually not the best option due to the large list of hard to pronounce ingredients they are usually made of so reading and understanding labels is very important. I have adopted the mantra of not eating anything I cannot pronounce. Olive oil is what I use right now.

 

Whenever you try a new food do it the same as trying a supplement. Eat only a very small amount then give it a couple of days to work its way through your system. If you have a reaction wait a few days for it to get out before you try something else. If you have no reaction then you can increase the amount slowly.

 

That's about all I can offer. It's what I did and am still doing and it works for me. I have been able to add back in the blueberrries, carrots, and finely chopped fresh turnips to my meals as well as the fresh oregano, basil, and rosemary so the gut issues do get better in time.

 

 

[FeralCatman]

UPDATE

 

So far this month is doing better than last month. I have started tapering the Allegra again but this time very slowly. Here is the critique that I've been promising now that I have all of the pieces of the puzzle I was needing.

 

_______________________________________________________________________________________

_______________________________________________________________________________________

 

Here is the critique I promised for events of the last year since I stopped taking Seroquel.

 

First, I want to cover what I did right and most of that happened before I actually stopped taking Seroquel. I had no idea what I was in for when this started but the first thing I did right was to not listen to my PNP about the rate of decrease that would be appropriate. I disregarded what I was told and went very very slow. Even though I had not yet found Surviving Antidepressants I could tell by the way I felt after a dose reduction that slow was the way to go. My recovery time ended up working out to be 17 days so I made changes every 3-4 weeks and sometimes longer. I also only made one change at a time. That means when my thyroid needed to be adjusted, I stopped tapering to focus on that and once my thyroid was stable again then I commenced tapering further down. The second thing I did right was to spend a lot of time improving my physical shape and diet prior to tapering down. It wasn’t 100% where I needed to be but I made a lot of progress. This probably saved my life. As all of you know getting off these drugs is very hard on the body. The third thing I did right was to keep doing research and learning about what I was trying to do. The fourth thing I did right was to have all of the equipment on hand to monitor myself while tapering down. This I covered in my original write up which is posted on this thread. The final thing I did right was to work closely with my PCP to deal with different things that happened along the way that were potentially dangerous to try and handle on your own. Having a willing doctor on board is critical to this process.

 

Now for what I did wrong

 

1.       I and my doctor assumed that once down to a low dose that Seroquel was ‘only an antihistamine’ and so should be in the clear when I stopped it. This of course proved to be a bad assumption as we were comparing Seroquel to things like Benadryl which aren’t even in the same league. It’s like comparing apples and hot sauce. Seroquel is far more powerful as an antihistamine than any OTC med and even though at low doses the binding affinity is primarily for histamine H1 receptors you can’t really safely assume that it is only affecting histamine at that point. The fact is that no one really knows for sure what these drugs do and how they act in the human body so the best thing is to make no assumptions. As a result, I jumped off at 6.25 mg which when looking back was still way too high and I should have tapered down slowly to well below 1 mg.

 

2.       I was in a hurry to get off the meds so in the end I pushed harder than I should have instead of going slower. This may be part of what caused things to get so bad later on. I have read this in some of the forums. Pushing too fast causes damage and if you don’t give enough time to stabilize the damage can build up and cause serious issues. It’s that whole kindling thing.

 

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

 

4.       I was taking Allegra for allergies at the same time I was taking Seroquel. I then stopped them both very close together and didn’t realize how badly it was going to affect me. They both bind with H1 Histamine receptors in the gut as well as throughout the peripheral nervous system. Unbinding those receptors opened me up to serious GI issues and through the ‘Gut Brain Connection’ opened me up to severe mood and anxiety issues. There was really no way to know beforehand so as usual I got to find out the hard way. Discovering that Benadryl solved the problem is what led me down the road to discovering histamine intolerance and the possibility of MCAS. So, it was a good learning experience but in hindsight, after jumping off the Seroquel, I should have held everything steady and let my body adjust. Even messing with OTC meds early on is a bad idea. I was in too much of a hurry to get off everything and get my allergy testing done and that sense of haste proved to be my undoing.

 

5.       Once I started the Allegra again and stabilized my blood sugars were still high. I was really mad at that and wanted the diabetes gone so I stepped my exercise routine into high gear and cut back my diet. I actually made a lot of progress physically but without knowing it at the time I was also causing huge amounts of stress to pretty much every system in my body while it was also expending huge amounts of energy trying to heal. I should have taken a gentler approach and stuck with walking only. Impatience will get you into trouble every time.

 

6.       In December I started tapering the Allegra again and even though I had symptoms I tried to ignore them and push through. My body was not yet ready. This is when the worst of the symptoms started and is what led me down the road to being on Metoprolol to protect my heart. There really was no way to know this was going to happen but in hindsight I would have not pushed as hard and accepted that I needed to take things really slow. Slower is faster as my engineer in the Navy used to say. I will repeat, impatience will get you into trouble every time.

 

7.       This time starting the Allegra back up did not clear up the symptoms and they got much worse. This is when my immunologist suspected MCAS. We started the testing and then he went on an unplanned vacation. Me and my other doctors were left to try and figure things out. We went with the MCAS assumption and increased the Allegra dose as well as trying another antihistamine and that just made things worse. My ENT doc finally was able to get my stuff sent to Brigham and Womens in Boston who then ordered more tests and I found out that I don’t have MCAS and that what I was experiencing was actually withdrawal induced dysautonomia.

 

8.       At that time, I also did not know about a phenomenon called ‘The Kick’. I just learned of this recently from a Seroquel Survivor who is not on this site. This person has been in touch with many anti-psychotic survivors and ‘The Kick’ is apparently fairly common. This is when, between 4-7 months after stopping the medication, the poor unsuspecting soul (me in this case) is suddenly hit with a resurgence of severe withdrawal symptoms after a period of improvement. You basically just get to the point where you think you made it and then ‘The Kick’ sneaks up on you. No one knows what causes it. This is the point that I think many people hit and end up back on the medication or diagnosed with something they don’t have or both. This is part of why I ended up on Metoprolol to protect my heart. Interestingly enough this is also the time when my endocrine system made its major corrections and my diabetes disappeared and the weight really dropped off so perhaps that had something to do with the severity of symptoms. I really don’t know.

 

9.       Still being a bit ignorant I continued to try and push the exercise and my symptoms did not get better, they got worse. This is when my BP and heart rate started doing crazy things and I started getting the adrenaline surges, had trouble with bowels and urination etc. This is also when the food intolerances kicked into high gear. These issues are still ongoing but less severe. This is Autonomic Dysfunction or Dysautonomia. They tend to flare up and calm down and vary from day to day. I have no identifiable triggers that are at all consistent which is frustrating.

 

10.   Unfortunately, the increased Allegra was not necessary. The metoprolol was and still is necessary. Both will have to be slowly tapered which extends the timeline for getting off meds way out which is definitely a bummer. It is possible that the Allegra is hampering my recovery but there is really no way to know which is also a bummer. In hindsight we should have waited for all of the testing to come back before adding meds but at the time I was getting desperate for some relief. I will say it again “Impatience will get you into trouble every time.”

 

11.   There was still a lot I did not know about diet, the nervous system, terms like Dysautonomia, etc. so I had many knowledge gaps that I have now managed to fill thanks to ‘Surviving Antidepressants’. I am certainly much better prepared to move forward and am still learning and will continue to learn as much as I can. Knowledge is power to anyone in this situation.

 

12.   One thing I learned during my readings on up-regulation and down-regulation of neurotransmitter receptor sites on our cells it that the whole process is controlled by our DNA. So, unless our DNA has been drastically altered, our DNA will always try to return things to factory settings once you remove an offending substance. The speed at which this happens is the big unknown. Since I have read nothing regarding these medications altering our DNA I can rest assured that, though the process of doing so may be miserable and painful, eventually my DNA will restore the balance to where it should be. It is only a matter of time. I recently had contact with a Seroquel survivor who went CT at too high a dose and became functionally blind as a result. Now, 14 years later, this person has recovered 95% of their vision. Healing at work even with catastrophic damage like that. Also a good example of why these medications are just not worth it. They are toxic and unpredictable and even worse very poorly understood and poorly studied as are the supposed illnesses they are prescribed to treat. At one point I was on 7 psychiatric medications simultaneously in addition to 10 medications to control the side effects of the 7 psychiatric medications. I was also still drinking and smoking and drank tons of coffee and didn’t exercise much. 17 medications at the same time plus the extras, poly pharmacy at its finest. Side effects included massive weight gain, diabetes, metabolic syndrome, and high blood pressure. I am now down to only 5 medications and at the end of this will be down to 3 medications. This does not include my allergy nasal sprays. I had been using 3 but now I don’t need the steroid inhaler because the inflammation in my sinuses that was present constantly while on the Seroquel is now gone. I have lost over 100 lbs. When all of this is finally over I will only be on a thyroid pill and if I am really lucky, that will eventually go as well. The diabetes and so much else are now gone. All evidence that my DNA is intact and doing its job as I eliminate more medication.

 

Where Do I Go From Here

 

Since Allegra has turned out to be baby Seroquel in my case and is still directly affecting my peripheral and autonomic nervous system through the blocking of H1 histamine receptors in those systems including my guts, it has to be the first to go or I won’t be able to fully heal up from the Seroquel. So, I have started to slowly taper that med down. I really screwed myself by adding in the extra dose this spring but oh well, there really was no way to know at that time. My first drop of 30mg off of the 420mg I was taking caused me a couple of bad days and an increase in cortisol spikes for a couple of days. I also got moody as hell. This actually makes sense since the body uses histamine as a sort of master neurotransmitter / hormone to regulate all of the other ones in the PNS and ANS so with a hypersensitive post withdrawal nervous system altering histamine receptor function is going to disturb all other functions in those systems and then feed back into my CNS and make me miserable. This time I will take my own advice and listen to my body and not make weekly reductions. If after 2 weeks I feel okay then I will try it again. After that I will try to make a 15mg drop every 2-3 weeks until I get down to a single 24-hour pill. After that the reductions will be smaller. Fortunately the pills are safe to cut or crush and I can weigh out doses into capsules if needed. Same for the Metoprolol. I am probably looking at 12 – 18 months to get off of the Allegra. If my BP and pulse start to drop I will have to hold and switch to slowly tapering the Metoprolol. Wash, rinse, repeat until both drugs are gone. After that I am taking 12 months off to forget about all of this stuff for a while and just heal. I am really sick of all of this. Hopefully I will be able to get back to hiking before too long. I really do miss it more than anything else and I depend on it as a source of peace and relaxation that I have never found in the world of people. It’s why I always hike alone, most people just can't seem to keep it zipped and enjoy their surroundings. After that the Paxil will be next. When that is done, I am taking another year off to heal. The Carbamazepine will be last. I have no idea how long this will all actually take but I will eventually get there. Though I try to focus on how far I have come and how much progress I have made I have to admit that I really struggle some days with being severely pissed off that I have to go through all of this because I asked for help and trusted these foolish people. Some F@#$ing help!! 🤬 I was told Seroquel was not addictive and that there was no withdrawal and could safely and easily stop the medication in a week. Thanks for nothing psychiatry and especially thanks so much for that informed consent. You quite successfully made me much worse than when I started. So happy to have provided you with a cushy job and a retirement fund. I will be forever hateful. 🤬 In any case, as far as Seroquel is concerned, I would consider myself a 75% success story so far.

 

From this point forward I probably won’t have too much to post since I am not actually tapering a psychiatric medication right now. I will post updates but perhaps not as frequently. If I read articles that would be of interest to the cause I will post them and if I find anything else that is useful, I will be sure to post that. I may end up with other questions and others may have questions of me so I will also pop in from time to time and check messages and posts. I will turn my message notification back on but my other notifications are off for now so there will be delays in responding to any posts. I need to chill for a while. I am also going to post my diet chart which goes with my ‘A Path To Healing’ chart. I need to figure out how to remove an attachment in order to make room to do that and as soon as I can it will get posted. I want to say thanks again for everyone who has posted on this web site. I really would have ended up lost without it as this is a very difficult process to navigate on your own. It really is my best resource.

[FeralCatman]

I should add to that last post for anyone in the process and even more importantly if you are currently just thinking about tapering your meds especially an antipsychotic that you need to be very very careful. These medications can be dangerous and unpredictable and so can the withdrawal process. If you don't have willing medical support I strongly suggest you find it before you get started. You can really mess yourself up while doing this. I have done some pretty dangerous things in my life via my employment and military service and this is by far the most frightening and unpredictable thing I have ever done. It is downright scary and it needs to be respected.

[methuselah]

2 hours ago, FeralCatman said:

One thing I learned during my readings on up-regulation and down-regulation of neurotransmitter receptor sites on our cells it that the whole process is controlled by our DNA. So, unless our DNA has been drastically altered, our DNA will always try to return things to factory settings once you remove an offending substance. The speed at which this happens is the big unknown. Since I have read nothing regarding these medications altering our DNA I can rest assured that, though the process of doing so may be miserable and painful, eventually my DNA will restore the balance to where it should be.

i love this, it’s very reassuring.  Do you have a link you could provide that discusses this in more depth.  Perhaps it’s common knowledge and it’s everywhere.

 

thanks and congrats on all of your progress, extremely impressive sir!

[FeralCatman]

@methuselah Here is a link to Wikipedia which mentions the DNA component. There are lots of articles and posts from medical school classes at various universities which also discuss this.

 

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

[FeralCatman]

I finally met with my nutritionist. We went over my 'Foods to Heal' chart that goes with my 'A Path To Healing' chart that I posted. The list is too large to directly post so I attached it for download instead if you want to view it. There are foods listed to address each issue I am dealing with along with nutrient lists. The list is taken from multiple web sites and I did this to get it all in one place to make it easy to craft a diet that suits my needs and listed issues instead of trying one diet at a time. (ie: low histamine, low FODMAP, etc.) This is a hybrid of several diets. If you download them you will have to option to edit for your own use if you want.

 

 

A Path To Healing.docx

 

Foods To Heal.docx

 

 

 

[FeralCatman]

I just noticed that under the SIBO category I forgot to include oregano and rosemary and basil. Oregano is the best out of the three and all three have antimicrobial properties that can help with SIBO. They are not a cure but they can be helpful. You would have to look it up but I think honey is also helpful but my memory is not the best so look it up to check.

[FeralCatman]

I also just noticed that on the a path to healing document some of the entries are highlighted in Black and you can't read them. This was the version I hung on my wall after I crossed out everything that I had done just so I could see some progress. If you want to read the secret code then just open the document and remove the black highlighting and all the words are still there. I should have checked it before I uploaded it but that's what happens when you haven't slept well for a couple of days. For those who want to download it sorry for the inconvenience but I guess it adds to the adventure 😋

[FeralCatman]

Since electrolyte balance can be a problem during withdrawal and things like Gatorade and other commercial products may not be tolerated due to artificial ingredients and too much sugar (I can't drink any of them) I have taken to using a homemade recipe that my nutritionist sent me. I use no sugar added apple juice, no sugar added cranberry juice, lemon juice, and salt. I make ice cubes out of the apple and cranberry juice and keep them in a bag in the freezer.

 

16 oz glass

2 apple juice cubes

1 cranberry juice cube

pinch of salt

splash of lemon juice

fill remaining space in glass with water

 

All ingredients are low histamine / anti-histamine and as long as you buy products with nothing artificial it works. This provides potassium and sodium and vitamin C as well as other nutrients.

 

If you want to try it I suggest trying the individual ingredients first to make sure you are good to go and then give it a try. You might like it or you may find it absolutely disgusting. I happen to like it.

 

There are lots of similar recipes online that you can use with things like pomegranate juice, etc. This is just the one that I like.

 

I start out every day with this drink. In the morning I also add to it 1 teaspoon of pure psylium fiber husk for a fiber boost and 1/4 teaspoon of crushed ginger for gut motility. Much better than Metamucil an other commercial products that have coloring's and other artificial ingredients.

 

[FeralCatman]

On 8/15/2022 at 8:58 AM, FeralCatman said:

Where Do I Go From Here

 

Since Allegra has turned out to be baby Seroquel in my case and is still directly affecting my peripheral and autonomic nervous system through the blocking of H1 histamine receptors in those systems including my guts, it has to be the first to go or I won’t be able to fully heal up from the Seroquel. So, I have started to slowly taper that med down. I really screwed myself by adding in the extra dose this spring but oh well, there really was no way to know at that time. My first drop of 30mg off of the 420mg I was taking caused me a couple of bad days and an increase in cortisol spikes for a couple of days. I also got moody as hell. This actually makes sense since the body uses histamine as a sort of master neurotransmitter / hormone to regulate all of the other ones in the PNS and ANS so with a hypersensitive post withdrawal nervous system altering histamine receptor function is going to disturb all other functions in those systems and then feed back into my CNS and make me miserable. This time I will take my own advice and listen to my body and not make weekly reductions. If after 2 weeks I feel okay then I will try it again. After that I will try to make a 15mg drop every 2-3 weeks until I get down to a single 24-hour pill. After that the reductions will be smaller. Fortunately the pills are safe to cut or crush and I can weigh out doses into capsules if needed. Same for the Metoprolol. I am probably looking at 12 – 18 months to get off of the Allegra. If my BP and pulse start to drop I will have to hold and switch to slowly tapering the Metoprolol. Wash, rinse, repeat until both drugs are gone. After that I am taking 12 months off to forget about all of this stuff for a while and just heal. I am really sick of all of this. Hopefully I will be able to get back to hiking before too long. I really do miss it more than anything else and I depend on it as a source of peace and relaxation that I have never found in the world of people. It’s why I always hike alone, most people just can't seem to keep it zipped and enjoy their surroundings. After that the Paxil will be next. When that is done, I am taking another year off to heal. The Carbamazepine will be last. I have no idea how long this will all actually take but I will eventually get there.

@Frogie Just wanted to get some input from a staff member to make sure what I am planning to do seems reasonable to you.

[FeralCatman]

UPDATE

 

I'm definitely still hypersensitive to physical exertion. I've been pretty careful to go easy but I had one last thing to get done this summer. A few days ago I overdid it moving a bunch of firewood and finishing my trailer so the last couple of nights have been a bit rough because I haven't been able to sleep very well and the anxiety kicked back into high gear so I've been doing a lot of thinking. I realized something that maybe other people have realized.

 

Over the years I've had a number of friends who struggled with alcohol and street drugs. I tried very hard to be there for them and help them through their struggles. In looking back at all the symptoms that they had and then comparing it to what I am going through and what I have read in symptoms and self care the withdrawal and recovery process really doesn't seem all that different. In fact there are only three differences that I can see that clearly stand out.

 

1. With street drugs there is a desire to go out and get high again. This is not the case with most psychiatric meds. That's the only difference between addiction and physical dependence. 

 

2. Users of street drugs have had informed consent since pretty much everyone at least in the United States gets taught early on the hazards of street drugs and the risks of addiction and physical dependence. You would really have to be living under a rock to not know that. Users of FDA approved medications have had absolutely zero informed consent.

 

3. The only thing that makes the FDA approved medications safer is that you don't have to worry about them being cut with rat poison and God only knows what else. That is simply a quality control issue.

 

Other than these three things, from my personal experiences, you pretty much end up in the exact same place. WOW!!!

 

I guess the good thing you can take out of this is that a lot of the techniques that help people successfully get off of street drugs apply just as much to people coming off of FDA approved medications. There are tons of references out there on the internet to help people get off of street drugs that should be applicable in our case.

 

 

[morgana]

its great to see you are doing so well @FeralCatman, you seem to have everything on track..i had never had problems with allergies until 3 years ago while tapering off zyprexa.i have  become sensitive to everything, my face puffs up, my eyes and nose so itchy, i get burning hot sweats and rashes and hives and its never ending. I do take Quercetin which is suppose to help as an anti histamine but i do not think it does much and i wont take any over the counter medications. i guess it will just take time for my CNS to deal with the over load of histamine. assuming it will take years. thanks for documenting your issues and progress it makes me realize its not just in my head, that it is happening to other people as well cheers morgana

[FeralCatman]

@morgana Sorry to hear you are having those issues. This whole process really sucks but it's comforting to know none of us are alone. Everything I have read indicates eventual recovery for the both of us. Take care and stay strong.

 

[FeralCatman]

UPDATE

 

WD symptoms are flaring up again so I am reverting to a holding pattern until things calm down. Other than dropping the Allegra dose from 420mg to 390mg over 2 weeks ago and then overdoing it with the wood pile I have made no other changes. I am having the adrenaline surges again at night that wake me up so am not sleeping well. Seems I am heading into another wave. I also am having headaches, pain at the base of my skull, chest pain and tightness, my tolerance to physical activity has gone down a bit, and my anxiety has gone up a bit. Perhaps it's due to all of the changes over the last 3 months with getting off the Nexium, getting off the Crestor, and adjusting my Thyroid medication. My body may just be saying that's enough for now I need a break. Not really sure but that's the assumption I will be going with.

 

Yesterday I had a significant flare in chest pain with hot flashes and nausea so I went to the ER. They did cardiac blood work, 2 EKG's, CBC, CMP, TSH, Chest X-ray, 5 hours on a heart monitor, and a Tick borne Illness panel. They also scheduled a stress test for next Friday. All tests were perfectly normal other than a low heart rate due to the Metoprolol and am waiting on the Tick borne Illness tests. My vitals and EKG at home have been fine. So, most likely this is a flare of withdrawal symptoms (ie:another wave). Hopefully this wave will fix the adrenaline surges and let me sleep more consistently.

 

The ER doc was amazingly well versed in psychiatric drug withdrawal and dysautonomia. She really seemed to know all about it. She was very empathetic / compassionate towards my situation and was very nice about everything. She agreed that these meds are bad news. She also has a close friend with dysautonomia from a viral infection she picked up in Mexico so it was a personal issue for her as well. Her friends symptoms are the same as WD symptoms. She said what I am going through is pretty standard for withdrawal and that it is a very difficult process to go through. She also said she would be willing to talk to her friend and find out what was most helpful for her and would call me at home if she had anything that would possibly be helpful. I told her to go ahead so we'll see what comes out of that. It was very refreshing to be treated so well at an ER and not be dismissed. I thought it would be helpful to everyone to share this. I have a few good doctors I have put together over the years and there are still some good ones at the ER's of the world. I have been very lucky to somehow keep running into these people. Yesterday's experience helped restore some of my sense of safety with respect to going to the ER and helped to dissipate some of the anger I have been struggling with. Hopefully sharing this experience will help some of you out there who are struggling with the same anger.

[FeralCatman]

I forgot to add to the list of tests done that they did a covid test as well and that was negative.

[tsranga]

1 hour ago, FeralCatman said:

UPDATE

 

WD symptoms are flaring up again so I am reverting to a holding pattern until things calm down. Other than dropping the Allegra dose from 420mg to 390mg over 2 weeks ago and then overdoing it with the wood pile I have made no other changes. I am having the adrenaline surges again at night that wake me up so am not sleeping well. Seems I am heading into another wave. I also am having headaches, pain at the base of my skull, chest pain and tightness, my tolerance to physical activity has gone down a bit, and my anxiety has gone up a bit. Perhaps it's due to all of the changes over the last 3 months with getting off the Nexium, getting off the Crestor, and adjusting my Thyroid medication. My body may just be saying that's enough for now I need a break. Not really sure but that's the assumption I will be going with.

 

Yesterday I had a significant flare in chest pain with hot flashes and nausea so I went to the ER. They did cardiac blood work, 2 EKG's, CBC, CMP, TSH, Chest X-ray, 5 hours on a heart monitor, and a Tick borne Illness panel. They also scheduled a stress test for next Friday. All tests were perfectly normal other than a low heart rate due to the Metoprolol and am waiting on the Tick borne Illness tests. My vitals and EKG at home have been fine. So, most likely this is a flare of withdrawal symptoms (ie:another wave). Hopefully this wave will fix the adrenaline surges and let me sleep more consistently.

 

The ER doc was amazingly well versed in psychiatric drug withdrawal and dysautonomia. She really seemed to know all about it. She was very empathetic / compassionate towards my situation and was very nice about everything. She agreed that these meds are bad news. She also has a close friend with dysautonomia from a viral infection she picked up in Mexico so it was a personal issue for her as well. Her friends symptoms are the same as WD symptoms. She said what I am going through is pretty standard for withdrawal and that it is a very difficult process to go through. She also said she would be willing to talk to her friend and find out what was most helpful for her and would call me at home if she had anything that would possibly be helpful. I told her to go ahead so we'll see what comes out of that. It was very refreshing to be treated so well at an ER and not be dismissed. I thought it would be helpful to everyone to share this. I have a few good doctors I have put together over the years and there are still some good ones at the ER's of the world. I have been very lucky to somehow keep running into these people. Yesterday's experience helped restore some of my sense of safety with respect to going to the ER and helped to dissipate some of the anger I have been struggling with. Hopefully sharing this experience will help some of you out there who are struggling with the same anger.

 

 

Sorry to hear that you are flaring. Trying to figure out what is causing the flare is the most challenging and frustrating part about withdrawal and is likely to cause even more anxiety. 

 

Most of the times, there is really no obvious trigger - it just happens, and we can go off on a wild goose chase.

 

I just got 4 symptom free days after my travels. I have no idea why, but after a night where I had 8+ hours of sleep, my symptoms returned in full force last night. I had chills, my BP went up, and my gut was constantly active and whenever I tried sleeping, I would get adrenaline rushes.. all of which have not occured in over a month.

 

The best thing to do is to go to your toolkit and use the tools - for me it's usually lie down and breathe if I can, walk around, watch something fun, or go back to my journal to document  patterns without analysis.

 

Oh btw, I have found that full/new moon phases can cause a flare, when I have exhausted other possibilities.

 

 

[FeralCatman]

@tsranga Thanks for the support. It's appreciated. 😉✌️Yes, this flare is definitely a bummer but other than doing a safety check to make sure no damage has been done I won't be going on a wild goose chase this time. I expect that the stress test and Tick Bite Tests will come out fine. My daily vitals are fine. This is just part of the recovery process and I expect that my brain / nervous system is just initiating another part of the repair process and my body is stressed right now. It really sucks but not much to do outside of what I already do. I am cutting back to a bare bones diet for a few days to clear out my guts and am halting my multivitamin, magnesium, fish oil, and vitamin C for a few days as well to make sure it I am not developing a sensitivity there. I'll add things in one at a time again just to make sure. Other than that I'm just going to have to ride it out. Talking to that knowledgeable ER doc yesterday was very helpful. She also thinks this is just a dysautonomia syndrome flare. She really seemed to know her stuff and she also said any time I feel like something has changed and feels at all dangerous to just come back and get checked. Her friend with dysautonomia has to do the same thing. Better safe than sorry and since I have the resources it's best to just go. Helps keep the anxiety down too.

 

I get a bit nutty on the full moon. Always have. My beard seems to come in a bit thicker that time of the lunar cycle as well and I get the urge to howl. 😋

[FeralCatman]

@tsranga I should also add that I'm sorry to hear that you are experiencing a bit of the same again. It's far from a fun way to spend your days. I hope you are feeling better soon and have another extended window soon. I watched 'Top Gun - Maverick' this morning and am going to watch it again. Top Gun has always been one of my favorite movies and (spoiler alert!!!) the sequel is even better. 😁

[FeralCatman]

I should add to my update that it's really not all that surprising (disappointing perhaps) that I am going through this again. It is definitely not as bad as it was this spring even though it's still crappy. When I think about it my body has gone through massive changes over the last few months. I lost 30 lb, my cholesterol normalized and I stopped taking crestor, my diabetes normalized which is a huge endocrine adjustment, I stopped taking my nexium which is a huge change to my gut environment, and my thyroid function improved so we changed my synthroid dosage. On top of that I just reduced an antihistamine. As a result my body is going through a huge number of chemical adjustments right now and not just with neurotransmitters. All kinds of enzymes and enzyme pathways are recalibrating, how I metabolize what I am taking in is probably changing, nutrient absorption is probably changing, my CoQ10 levels are probably going up so that's altering cellular response, my diamine oxidase levels are probably changing, etc. That's a huge amount of stress to deal with. When you put all that together it's not really a surprise that my nervous system is now screaming at me and telling me to cut it out. "No more changes right now I need a break" is what I think it's telling me. So that's what I'm doing is giving my poor old beat up nervous system the break that it's asking for. I'm just going to let it lay in a corner for a while and lick its wounds. When I feel better I'll beat on it some more and start reducing the antihistamine again.

[FeralCatman]

UPDATE

 

Well, that was fast. I only ended up having a couple of bad days. Now I actually feel better than ever. Very weird but it certainly verifies the whole windows and waves thing. Recover is definitely not linear and setbacks seem to result in improvements. My symptom constellation seems to change every time I have a few bad days and there are small improvements each time.

 

For the first time since jumping off the Seroquel I have, on 2 nights now, been able to sleep 5 hours at a stretch uninterrupted. I get up to use the bathroom and can then go back to sleep for another couple of hours which is pretty normal for me. Other nights I sleep 2 -3 hours at a stretch before getting up instead of 1 - 2 hours. So, I am getting some much needed genuine restorative sleep. On Friday and Saturday I was finally able to nap during the day, something I have been unable to do since jumping off the Seroquel. I am on my third completely functional and symptom free day and on my 5th day of no anxiety or depression. This is the first time that's happened since I jumped off the Seroquel. It took almost 13 months. If I am still feeling okay this Sunday I will reduce the Allegra again and see what happens. I have my stress test on Friday which, if good, will bring peace of mind. For the first time since jumping off the Seroquel I can read for pleasure again which is nice. So, overall, despite the bumps in the road and setbacks, there is a clear trajectory and improvements are happening even though some days it feels like I am just sliding backwards. I also did another home A1C test and it is holding steady at 5.5 which is awesome. Once I am off the Metoprolol and am exercising more vigorously and can lose another 10-15 pounds to get to my goal weight I think I can drive that number down further. Right now I am doing gentle exercise on my rowing machine in the morning while my thyroid pill soaks in to keep my body moving. Unlike when I go for a walk, if anything happens I can just stop and rest instead of having to walk the distance home. I like eating like I have been so I think at this point the diet will be permanent. Dairy and gluten are gone for good from my house. The only thing I would like to add back in at some point will be my flavored decaf with cream and stevia in the morning. It's the only thing I actually miss at this point and my mornings still do not feel right without it.

 

Here are the statistics for August 2022, the 13th month since I jumped off the Seroquel.

 

13 Mediocre Days     42 %

12 Good Days            39%

6  Normal Days          19 %

0  Bad Days                  0 %

 

Days at good or above 58 %

[tsranga]

You seem to be having a similar journey to mine, especially with the changing symptom patterns.  

 

I'd say that eventually, I have gotten to a period of 4-5 hrs of uninterrupted sleep, and occasionally a bonus of 1-2 hrs of early sleep, and 1-2 hrs of disturbed REM sleep before waking up. I believe that good sleep pressure is involved in the early sleep onset, while cortisol/norepinephrine is involved in the early AM hours.  Occasionally, most often due to GI/temp regulation issues, this sleep cycle gets disrupted with a sleepless night. I thought that it was due to histamine dumps, but it could also be excess adrenaline. 

 

Also changing weather (heat/cold) patterns trigger symptoms that center around the head (sinus/head pressure/tinnitus), gut (visceral sensitivity, burping/bloat, slow gut motility) and legs (paresthesia/stiffness), with an overactive gut-brain axis, especially in the mornings before wakeup.

 

As for food, I find caffeine really helps with my symptoms - something to with acetylcholine/vasoconstriction?. Gluten is definitely a trigger (the refined flour is better than whole wheat), while dairy isn't as much (I can tolerate boiled raw milk better than pasteurized).

 

My REM sleep seems to be the most affected in withdrawal, and I believe that's tied to norepinephrine/acetylcholine. 

 

https://www.forbes.com/sites/quora/2016/10/05/these-neurotransmitters-are-probably-keeping-you-up-at-night/?sh=429d47c21228

 

[FeralCatman]

@tsrangaMy sleep disruption definitely seems to be an adrenal problem but it is certainly getting better with time. I also have trouble with temperature regulation at night as you mentioned and sometimes I have to bundle up but then later in the night I have to throw off all the covers because I'm overheating. I've had many symptoms go away completely. However one new one is the headaches that I forgot to mention. They seem to be the worst at the base of my skull and mostly they seem to happen at night after I get up to use the toilet and they are usually short-lived so it seems like having to urinate is creating an issue possibly in my brain stem or the nerve bundle that comes through but I'm not really sure. I suspect that in time these will go away as well.

 

I have found caffeine is a big No-No for me right now but that will probably also change in time as well just about everything else. That seems to be the only constant through this process is constant changing of how this syndrome presents itself. I track everything everyday in a spreadsheet. I keep track of allergens, weather, mood, sleep, vitals, etc. The only correlation I can find is that my symptoms are worse during oak pollen season in the spring. However I've known that for years so it doesn't tell me anything new. I even tried tracking sunrise and sunset and moon phase and there was no correlation there either. It really seems pretty random. Any body pain symptoms I have are hard to sort out due to the ankylosing spondylitis. I will say that my pain levels and episode frequency have dropped as I lower the dose of Seroquel and then got off it.

 

In talking to that ER doctor who's close friend has dysautonomia, she learned through her friend that the best thing to do is to clean up your diet as much as possible and put as few chemicals as you can into your system including supplements. Seems like in her case the minimalist approach was the best and that seems to be the case with me as well. It feels like it's best to just let my body do what it needs to do and when it decides to make me miserable just tough it out and it passes. It really doesn't seem like there is any other way to get through this so that's my plan. Since I'm trying to taper an antihistamine I don't want to change anything else if I don't have to and upset the apple cart even more so I'm trying to hold everything steady. Hopefully I won't be doing this for too many years and even better in another year this will mostly be over and looking at all my charts it definitely looks like I'm headed in the right direction though now that I've made a lot of major body changes it seems like the progress is slowing down. Time will tell.

 

Another bit of good news is that I've been able to add in fresh carrots for my garden with no problem so there's another little victory.