FeralCatman: recovering from Seroquel

[FeralCatman]

I haven't forgotten about writing my critique. I have been busy with projects on my property trying to get caught up and everything is taking much longer to get done right now. I will write it and post it soon.

[Ariel]

@FeralCatman

 

29 minutes ago, FeralCatman said:

My psych provider is a psychiatric nurse practitioner and is also a teacher at a school that has a nurse practitioner program. Most semesters she has students working with her. Since it is the Department of Veterans Affairs there are also med students who do rotations there as well. Recently, some of the residents gave a presentation on Tardive Dyskinesia. They emphasized the risks of anti-psychotics and stated that the anti-psychotic medications should be used with extreme care and discretion and if possible should be avoided. The good news here is that these are students who are not yet practicing in their field yet but will soon be entering the system. They are starting their careers with a more realistic view of their treatments and the harm that they can cause. I recommended to her that she have her students spend some time reading symptoms and self care on Surviving Antidepressants to learn what people are going through trying to get off of psychiatric medications. She thought it was a good idea and is going to incorporate that into her teachings. CHANGE IS COMING 😉✌️😺😺😺😺

 

This is really cool! 

Thank you for investing in honest communication with your PNP, and thank you for sharing about it here. 

Way to go on the activism <3 

 

[FeralCatman]

@ArielDuring our appointments I get on my soap box and rant. She says it helps keep her on track in her moving towards alternative treatments. She has actually brought students in with her during some of my appointments and I certainly don't hold back. I rarely ever do. She is currently getting certified for hypnosis and for teaching self hypnosis. She is also exploring homeopathic and naturopathic alternatives. She is the one that got me started with acupuncture. Lucky to have her.

[Ariel]

@FeralCatman

 

1 hour ago, FeralCatman said:

During our appointments I get on my soap box and rant. She says it helps keep her on track in her moving towards alternative treatments. She has actually brought students in with her during some of my appointments and I certainly don't hold back. I rarely ever do. She is currently getting certified for hypnosis and for teaching self hypnosis. She is also exploring homeopathic and naturopathic alternatives. She is the one that got me started with acupuncture. Lucky to have her.

 

This is awesome! 

Glad you found each other. 

You are doing great things together!

[FeralCatman]

@FrogieUPDATE After my second 10% reduction of the metoprolol it looks like reducing it is for now a no-go. Sunday night I did another 10% reduction and did not sleep well and then today and tonight the old symptoms that got me to go on it in the first place started coming back including getting woken up with an adrenaline surge every time I had to urinate. Once again it all feels like it radiates out of my guts. It is 4:00 a.m. and I'm getting a cortisol surge. So I take this to mean my body is not as healed up as I had hoped and I still have more healing to do before I can withdraw this medication. I will message my doctor today to check with him and then go back up to 25 mg tonight. I don't want to throw myself back into the fire again. Going forward I will focus on the gut healing and dealing with my thyroid and then try again in a few months.

 

Any comments on this would be welcome as the more information I can have on this the better.

[FeralCatman]

@FrogieI might add that I'm not getting any changes in heart rate and blood pressure yet and my EKG still looks normal so I don't want to push this to the point that I am affecting any of those values. I have a smartwatch now and my heart rate is still okay while I sleep and I'm not getting any big spikes yet. I know you can get in trouble with beta blockers so I don't need to be causing heart damage on top of everything else.

[FeralCatman]

I have another question for everyone. The one symptom I have that causes the most problems is that when I have to focus or concentrate on something for an extended time I get extremely fatigued. This is especially true with driving. It's not everyday but on the days that it happens I can drive about half an hour to 45 minutes and then have to take a break. Other days I can easily make a 200 mile trip and it's completely unpredictable until I actually get out on the road. Working on the computer and reading can do the same thing. Any input on this would be great.

[Frogie]

@FeralCatman

 

I think I would hold off on tapering the metoprolol for now. Your heart rate is being controlled by that and I think I would concentrate on the other medications first. If your tests are normal I wouldn't mess with it now.

 

Do you have a blood pressure cuff you can use at home? Then you can report to the dr for further review of the metoprolol.

 

It is very common to have fatigue. Take naps when you can and just rest. If you plan to travel 200 miles, stop a couple of times and get out and stretch and get some fresh air. Working on the computer can cause fatigue because you are looking at blue light for a long period. You could try getting some blue blocking glasses. That might help.

[FeralCatman]

@FrogieI have a BP cuff, a pulse oximeter, digital thermometer, glucose meter, an analog scale, and a Kardia Mobile 6 lead EKG. I also have a smart watch that tracks vitals and sleep. I take vitals and an EKG first thing every morning and include  them in my spreadsheet that I made that tracks sleep, vitals, mood, anxiety and things like allergens, exercise, and the weather. I also track daily pain levels for my ankylosing spondylitis. I also check vitals as needed with symptom flare ups so I  am fully covered there.

 

I am going to put the dose of the metoprolol back up to 25mg tonight and not mess with it for a while. I messaged my primary care doctor and I'm waiting for a reply. Since I'm most likely getting off crestor and having to adjust my thyroid meds better to do that first. We agreed to taper the metoprolol before I got the blood work back so that really changes things anyways. Given that my cholesterol numbers changed so drastically as well as my diabetes numbers my body is probably still pretty tuckered out from all the massive changes it has gone through over the last year. People that haven't seen me in a couple of years wouldn't even recognize me at this point which is a good thing. I also just came off the nexium and will most likely be stopping statins so I would guess my body is still going through some major changes so best not to change things right now. Since we didn't have the numbers we couldn't really account for that when we agreed to taper.

 

Thank you for letting me know about the fatigue. With all the stuff I've been through I have to say that is the most annoying part of all of this. I like to be active so it feels like I'm chained to a block of lead on my ankle and I am constantly having to fight myself. I just have to remind myself that it has improved immensely already and that ultimately I will get back to my full functionality. I am certainly far better than I was just a few months ago. This certainly is a test of patience and I'm a pretty patient person. Thank you for getting back to me so quickly 😉✌️😻😻😻😻

[Frogie]

@FeralCatman

 

4 minutes ago, FeralCatman said:

I have a BP cuff, a pulse oximeter, digital thermometer, glucose meter, an analog scale, and a Kardia Mobile 6 lead EKG. I also have a smart watch that tracks vitals and sleep. I take vitals and an EKG first thing every morning and include  them in my spreadsheet that I made that tracks sleep, vitals, mood, anxiety and things like allergens, exercise, and the weather. I also track daily pain levels for my ankylosing spondylitis. I also check vitals as needed with symptom flare ups so I  am fully covered there.

You are very prepared. I wasn't even aware you could purchase an EKG machine without being a dr. I have a blood pressure cuff, oximeter and a fitbit. But I only use my fitbit most of the time. That is great you are able to keep track of everything. Just remember, everything in your body fluctuates and so don't be alarmed if something is off here and there.

 

I think it is best at this time not to mess with the metoprolol also. Could you please add that to your signature. We don't suggest tapering more than one medication at a time because you don't know which one may be causing a side effect. And with everything else going on, I think it's best to start with the statin and get that over with first. You may have rebound reflux, which is common. I just want you to be aware of that. Watch spicy foods, drink water. When I went off of them I found Pregopops (of all things because I wasn't pregnant) really helped. Or you could try a little ginger.

 

Have your thyroid numbers been off through this whole tapering or did it just start? The reason I ask, is mine was off the whole time and the dr thought I might have had subclinical hypothyroidism. We just watched it while I was tapering because it didn't bother me much (I was too sick tapering to know the difference). But after I was done, It became very out of whack. I'm now in a very low dose of Levothyroxine and feel much better. You might talk with your dr about the subclinical hypothyroidism first, unless all your numbers are off. You need to have a full thyroid panel done to determine anything. But you know your body best. Fatigue can also be a sign of hypothyroidism. 

 

Fatigue is very common in wd. You will eventually gain your functionality back. But for the time being, rest when you are able. And you might want to shut the computer, phone and tv off an hour or so before bed as the blue light can affect your sleep and that causes fatigue. 

 

This whole process I think makes everyone a very patient person at the end. And that's a good thing. Life is too fast to begin with.

[FeralCatman]

20 minutes ago, Frogie said:

@FeralCatman

 

You are very prepared. I wasn't even aware you could purchase an EKG machine without being a dr. I have a blood pressure cuff, oximeter and a fitbit. But I only use my fitbit most of the time. That is great you are able to keep track of everything. Just remember, everything in your body fluctuates and so don't be alarmed if something is off here and there.

 

I think it is best at this time not to mess with the metoprolol also. Could you please add that to your signature. We don't suggest tapering more than one medication at a time because you don't know which one may be causing a side effect. And with everything else going on, I think it's best to start with the statin and get that over with first. You may have rebound reflux, which is common. I just want you to be aware of that. Watch spicy foods, drink water. When I went off of them I found Pregopops (of all things because I wasn't pregnant) really helped. Or you could try a little ginger.

 

Have your thyroid numbers been off through this whole tapering or did it just start? The reason I ask, is mine was off the whole time and the dr thought I might have had subclinical hypothyroidism. We just watched it while I was tapering because it didn't bother me much (I was too sick tapering to know the difference). But after I was done, It became very out of whack. I'm now in a very low dose of Levothyroxine and feel much better. You might talk with your dr about the subclinical hypothyroidism first, unless all your numbers are off. You need to have a full thyroid panel done to determine anything. But you know your body best. Fatigue can also be a sign of hypothyroidism. 

 

Fatigue is very common in wd. You will eventually gain your functionality back. But for the time being, rest when you are able. And you might want to shut the computer, phone and tv off an hour or so before bed as the blue light can affect your sleep and that causes fatigue. 

 

This whole process I think makes everyone a very patient person at the end. And that's a good thing. Life is too fast to begin with.

@Frogie This is the link to the EKG I have for myself. It's not cheap but it's worth it. There are other options from different companies but everything I read says this is the best one on the market. It fits in your pocket and links to your smart phone through the Kardia Mobile app. You can also link it to a BP monitor and record other health information and create reports for your doctor. If you get a subscription you can send off 4 EKG's per year to a cardiologist for evaluation for no extra charge.

 

https://store.kardia.com/products/kardiamobile6l

 

I agree about the tapering. I just got off the Nexium and didn't consider how stressful that could have been on my body in addition to all of the other changes I am going through. I would rather get off the statin first because there is no tapering and then hold and let my body adjust. We didn't have the blood work when the decision was made to taper so could not account for the other stuff.

 

I have had thyroid issues for many years. My problem is that it never stabilizes. It fluctuated for years before any tapering was even thought of which is the problem. I have had a TSH of 7.6 all the way down to undetectable and back again. I've been up to 125mcg of synthroid and back down to 50mcg. No one seems to know why it does this. I've had all of the tests repeatedly and I've been to an Endocrinologist. My anti-thyroid antibodies are pretty high and the other numbers go all over just like the TSH. So far it has been diagnosed as Hashimotos. It may partly be that but I think all of the meds mess with it as well. It's so hard to get solid answers on things like this especially because I have been on so many meds and other meds to fix what the meds broke and other meds to fix what the fix-it meds broke and so on. We'll see what my PCP says in his message.

 

I agree the world moves too fast these days. I am very lucky to be retired and to be able to be my own master and scheduler. I can also stay isolated and keep from getting sick which would add insult to injury which I don't need. I have spent the last 16 years fighting to get my health back and don't want to throw it away now that I have made all of this progress. From my max weight 16 years ago of 269 pounds I have now lost 103 pounds and am overall in far better shape now than I was then. I'd like to keep that trend going.

[Frogie]

@FeralCatman

 

That is an incredible little machine. I have a yearly EKG, but I suppose if you had heart problems it would be well worth it. I just rely on my bp monitor and oximeter and my fitbit. I would be obsessed with my health anxiety though.

 

I agree with the tapering strategy you have. I think your next move should be the statin. Then hold off a little while and give your body a rest before tackling the next one. 

 

I don't have Hashimotos, been tested twice for it. But my TSH goes up over 7 if not treated. With a small dose of Levothyroxine I keep it right around 2.0 which is perfect for me. I couldn't take Synthroid, I had a reaction to it but do fine on the generic. These meds sure mess with your thyroid, I have seen that in many people on here. Hopefully your's will settle down.

 

I don't work either, not at retirement age yet though. But it's more cost effective for me to stay home at this point. I am so proud of your weight loss! That is incredible. I lost 35 pounds in the last year and feel so much better. I now have my "hubby" on a pretty strict diet. He needs to lose a good 75 pounds. He's on a roll, lost 10 pounds in the last 3 months. Keep up the good work.

 

I have been vaccinated and boostered and still got covid in June. Just a milder case than I would have not being vaccinated. Still not fun. I know quite a few people that have it right now so I am staying at home as much as possible. But we just had a family get together in my backyard this weekend with 20 people. We all tested before getting together so hopefully no one had it.

[FeralCatman]

@frogie I'm lucky to be a bit of a loner. It makes things much easier in times like these.

 

Wanted to let you know that my PCP got back to me this afternoon. He agrees with the plan. I am going back up to 25mg of Metoprolol and he called in a prescription for a lower synthroid dose (again 🙄). I will be reducing to 88mcg and will retest in a few weeks to see where I am at. In all likelihood there will be another reduction given my past history but we'll see. I added all of this to my drug signature. If it needs alteration again let me know.

 

I was retired by my company a few years back. Wasn't my choice but I have too many health issues causing problems and can't keep up full time any more. Part of it was the meds I think and part is the Thyroid, Ankylosing Spondylitis, and Forestiers Disease. Those last 2 are causing my back to fuse from both ends of my spine. There is no treatment for Forestiers Disease as at my age it is very rare and it is poorly studied. It is a disease of aging. It progresses slowly but causes problems and pain. I'm only in my 50's so kind of a bummer but I am well taken care of so could be much much worse. I don't have much to worry about other than taking care of myself and my cats so I am very fortunate even though this was definitely not how I saw my life going.

[FeralCatman]

@Frogie I took the 25mg of Metoprolol last night and did much better. Slept pretty well. Still had a cortisol surge again this morning around 6 am but it was much shorter and less intense so those should fade away again in time. Not going to mess with it again for awhile. Started the decreased 88mcg synthroid dose this morning so we'll see how it goes. Thank you again for the responses and input. Much appreciated as always 😉✌️😻😻😻😻

[Frogie]

@FeralCatman

 

Glad that worked out. Hopefully in a few days you will level out again.

 

Good luck with the decrease of the Synthroid.

 

Keep me posted on how you are doing.

[FeralCatman]

UPDATE This is a quick one. I received the results of my Diamine Oxidase (DAO) test today from the lab in Germany. I am low. It verifies a histamine intolerance. This intolerance combined with a nervous system that has been run through a taffy puller is what made me so sick earlier this year when trying to stop the Allegra and is probably what worsened my WD symptoms. The two conditions were feeding on one another. There are multiple causes including medications and gut dysbiosis. The gut dysbiosis can be healed. My nervous system is slowly healing. In time with the right diet and a pro-biotic this should get better. Very good news since this verifies my current theories and gives me a very solid direction to move in. Very glad I had the test done despite the inconvenience and expense.

[FeralCatman]

UPDATE I will post more specifics after I talk to my doctor on Tuesday and my nutritionist on Wednesday and we have had a chance to discuss this. Based on what I know is going on with me and research I have done I will post specifics on what is doing what and how we plan to proceed.

[Ariel]

@FeralCatman

Thank you for sharing your updates. 

It is interesting and inspiring to follow your process.

I'm impressed with your energy and tenacity in regards to these health initiatives.

Kudos to you for being so proactive and taking charge of your health. 

I trust your investments will pay off and you will reap the benefits of appropriate intervention. 

Healing is happening <3

[FeralCatman]

I sent a link to this article as well as a link to the actual study to my psychiatrist this morning. It was apparently unnecessary as she already knew about it. It was apparently a Hot topic at their meeting this morning. Seems like it really shook things up. Change is coming 😉✌️😺😺😺😺

[FeralCatman]

I made this chart for myself to hang on the wall at my desk to help me stay focused and thought I would share it. Formatting will come out a little bit weird but you'll get the idea. 😉✌️😺😺😺😺

 

	A Path To Healing
	Conditions Requiring Action
	Gut Dysbiosis / Leaky Gut			Histamine Intolerance				Dysautonomia
	Causes			Causes				Causes
	Poor Diet	Medication Damage		Poor Diet	Diamine Oxidase Deficiency			Possible Chronic Imbalance	Withdrawal Induced
	Sugar Dairy Gluten Artificial Ingredients Caffeine Processed Foods Fast Foods	Antibiotics Nexium Paxil Seroquel NSAIDS Allegra Benadryl Crestor Tegretol??		High Histamine Foods Sugar Dairy Gluten Artificial Ingredients Caffeine Processed Foods Fast Foods	Gut Dysbiosis / Leaky Gut	Medication Damage		Treatment
					See Yellow Area To Left	Nexium Paxil Seroquel NSAIDS Allegra Benadryl Metoprolol		Heal Gut Damage Heal Histamine Intolerance Exercise as Tolerated Rest as needed Magnesium Gycinate Starting at 10mg/day Fish Oil Acupuncture Time, Time, and a little more Time
	Treatment (Same For Both Conditions)
	Low Histamine Diet Eliminate Offending Medications As Much as Possible DAO supplement Vitamin C Quercetin Pro-Biotics Multi Vitamin

 

 

 

 

[FeralCatman]

Under the Dysautonomia Treatment I should have added Vagus Nerve exercises (I posted videos for those), my CES device for depression / anxiety, and this link which I received from my acupuncturist. This link has some easy techniques for strengthening your vagus nerve and vagal tone which helps stimulate the parasympathetic response and balance out the autonomic nervous system.

 

https://www.caringmedical.com/can-repair-vagus-nerves/#

 

As always these are not recommendations for others. I am not a doctor. My background is engineering technology. This is just my current plan which as always is subject to modification as needed. I thought some may find it helpful to see my thought process and method of attacking problems.

 

I should also add that the Diamine Oxidase (DAO) blood test is, like many tests, controversial in its utility as a diagnostic tool. Some love it and some hate it. There seems to be an equal amount of studies either way. I figured it would be better to get the test and try to see where I am at rather than to just try supplements and see what happens. If it did not show a deficiency then no need to take the supplement or at least take a smaller dose. In my case it shows deficient so I feel better about it. It may blow up in my face any way. We'll see. Better to be very thorough.

[FeralCatman]

I just posted this under dysautonomia but thought I would double up here since I thought people would be interested in it. Turns out autonomic dysfunction can trigger nasal allergy symptoms even though you don't have an allergy. Totally weird but apparently it's a known phenomenon so here is the link that includes links to the national library of medicine that discussed this problem.

 

 

[FeralCatman]

UPDATE

 

So, overall, the month of July was pretty crappy. I wasn't sure of the cause other than windows and waves phenomenon and it was time for a wave. I looked at my spreadsheet and realized that the downturn came when I had reduced down to 10% of the full Nexium dose and then jumped off. Problems started on July 3rd and my sleep started to fluctuate and some of the symptoms from earlier this year started coming back. I was holding my own though so the following week I tried to start tapering my Metoprolol. The first drop down to 22.5mg wasn't bad but the second drop caused a crash. I think it was the digestive upset and other symptoms combined with tapering the Metoprolol too soon that cause things to spiral down a bit. I held my own and things weren't too bad until I dropped down to 20.3mg of Metoprolol and things went downhill pretty fast after that. So, I went back up to the full 25mg Metoprolol and now a bit over a week later things are recovering. Good news is that I am now Nexium free and I was able to stop the Crestor so now I am Statin Free. So, in the first year off of Seroquel, which will actually be August 1st, I have lost 30 lbs, my diabetes is gone, my cholesterol has normalized, I am off of Statins, and I am off of PPI's (Nexium). So, despite the crappy wave of a month things are pretty good overall.

 

I spoke to my nutritionist today. Due to my reactions to things like garlic, onion, and the probiotic the suspicion of SIBO (Small Intestinal Bacterial Overqrowth) is now elevated. Causes of this can be Gut Dysbiosis which I know I have as well as a low fiber diet. Gut Dysbiosis can be partially caused by drug damage or interference. I may be going the home test route and just pay for it out of pocket instead of waiting for the lab test on September 19th. I messaged my PCP to see if he would be willing to treat the condition based on a home lab test vs. the lab test at the actual lab. If so I will do the home test so I can get the final piece of the puzzle in place and if SIBO is a problem I can start treating it now. It will involve antibiotics which I am not happy about but it is the best way to treat this and this is something that will not go away on its own. I am still on a pretty restricted diet for now until this last piece of the puzzle is in place. She is having me try some Quercetin once daily as well as a DAO supplement which may help with some of the symptoms and allow me to eat more comfortably. They will also help with reducing the Allegra dose which my PCP wants me to try to reduce as soon as I can once I am ready. I will give it a try again after I know the supplements are okay.

 

I am still working on the critique I promised. It will be posted sometime soon.

 

Here are the stats for this month

 

Bad Days                2     28%

Mediocre Days     17     61%

Good Days             6     21%

Normal Days          3     11%

 

Days at good or better     32%

 

To give perspective:

 

Bad Day = non functional day ie: on the couch or in bed

Mediocre Day = 1/3 Functional

Good Day = 2/3 Functional

Normal Day = 100 % Functional (even if I have a bit of depression and / or anxiety)

 

[FeralCatman]

UPDATE

 

My nutritionist also said adding fresh oregano, which I grow on my deck, is a way to help treat SIBO as it is a natural antimicrobial. It cannot cure SIBO but it can help. Basil and Rosemary, which I also grow, do the same but to a much lesser extent. So I will be adding those to my meals. We are holding off on the Pro Biotic for now until the SIBO test is done as Pro Biotics will make SIBO worse. She also suggested getting a fasting insulin test in addition to my next A1C test to give a better picture of my body's glucose processing ability so I will be adding that to the list.

 

I would also like to add that since coming off the Nexium seemed to bring back some of the previous Wave symptoms that I seem to be confirming through personal experience the significance of the Gut-Brain connection that is the hot topic these days. My guts definitely seem to affect everything else and most of my recent issues originate and radiate out from the area between my sternum and my pelvis. Anything that causes a gut disturbance causes whole body problems it seems including mood, thought, and anxiety. It is at least a contributing factor. I will be sure to be nice to my guts from this point on forward.

[Ariel]

18 minutes ago, FeralCatman said:

So, in the first year off of Seroquel, which will actually be August 1st, I have lost 30 lbs, my diabetes is gone, my cholesterol has normalized, I am off of Statins, and I am off of PPI's (Nexium). So, despite the crappy wave of a month things are pretty good overall.

 

Hi @FeralCatman

This is exciting news, thank you so much for sharing your update!

I'm delighted for you that you are making such progress. 

You are very brave and hard-working in your efforts. Good on you.

By the way, I also appreciate the color-coded chart you shared a few posts back. Impressive! 

I admire your organizational skills. 

Respect and healing vibes,

A. 

[tsranga]

18 minutes ago, FeralCatman said:

spoke to my nutritionist today. Due to my reactions to things like garlic, onion, and the probiotic the suspicion of SIBO (Small Intestinal Bacterial Overqrowth) is now elevated

 

I went down this exact path and I will share my experience.. 

 

I did the sibo test which was positive. Went through 4 months of herbal antimicrobials instead of rifimaxcin.  Symptoms improved but my repeat  sibo test was still positive, in fact, it had higher hydrogen numbers.

 

So, sibo ia a red herring..  I did have food intolerances and reactions to raw onion, garlic, fiber but I realized that it was more due to a hypersensitive gut/nervous system rather than major gut dysbiosis.  

 

I also did a gi-map test which showed mild gut dysbiosis for which I took Spanish black radish. 

 

Again, didn't notice much of a difference. 

 

What helped me most was to cook everything, especially high fodmap foods, and reintroduce them very slowly.  It took me a year for my food tolerance to improve, and now I can have salads and high fodmap foods without issues. I still do it in moderation, and not make a meal of it. 

 

The most important thing for us is to focus on gut motility and increasing digestion - as long as the gut is moving well, there is less likelihood of sibo.  I added a teaspoon of fresh ginger, lemon and salt before food to get th enzymes going, followed food combining guidelines (have fruit as a separate meal and not with other food), spacing meals (atleast 4 hrs) without snacking between meals, timing your biggest/densest meals to when the sun is at its peak.

 

I find that excessive gas/burping is a sign of excess parasympathetic activity at night, so I try to get th air/gas out during the day with a exercise (walking, yoga) and diaphragmatic breathing lying down after meals to get the gut moving.

 

 

[FeralCatman]

@tsranga Thank you for the input and your experiences. I will try the meal timing change and I am going to start back in with ginger tea. I only eat at home and cook my own food and even grow some of it.Next year I will be pretty close to growing all of my own food.  I never go out and live alone so that actually works pretty well since I only have to consider my own needs. As much as is possible I am treating things with a simple and clean diet and time and exercise and rest. I am currently on a low histamine restricted diet that just covers all of my nutrient needs. My only supplements so far are fish oil, multivitamin, vitamin C, Vitamin D, and Magnesium and I want to minimize use of any others as much as possible. I feel like my body needs to be left alone to do it's thing. My gut dysbiosis is more than mild as most of my good bacteria are pretty well close to non existent at this point and I have pretty high levels of Strep and Bacillus Bacteria. So I think it is a combination of a ramped up / hypersensitive nervous system and the gut issues. Except for the SIBO both can be healed with diet and time. My nutritionists suspicion of SIBO is due to my response to the Pro-Biotic more than anything else. We will see what the test shows and whether it is just borderline or really off the charts. If it is off the charts then I would consider trying the antibiotics for the 2 weeks and hopefully nothing will happen from that. If it is negative then I will continue doing what I am doing and wait. The Quercetin and the Histamine block are supposed to help with symptoms and if tolerated should help me to wean down off the Allegra which can contribute to DAO deficiency and histamine intolerance. Quercetin is found in many foods I already eat and the Histamine block is simply DAO which the body already makes naturally so hopefully I won't react to either of those. I will be introducing them very slowly. As I can tolerate it exercise gets added in. I have to balance things out as I have a large property to take care of and I am the only one here so I have to pick and choose how I expend my energy right now. I will post test results when I know them and take it from there.

[FeralCatman]

49 minutes ago, Ariel said:

 

Hi @FeralCatman

This is exciting news, thank you so much for sharing your update!

I'm delighted for you that you are making such progress. 

You are very brave and hard-working in your efforts. Good on you.

By the way, I also appreciate the color-coded chart you shared a few posts back. Impressive! 

I admire your organizational skills. 

Respect and healing vibes,

A. 

If I don't stay hyper organized all of the time I get completely lost. I also hate clutter and am a clean freak. Making charts like that helps me to stay on track with a project so I do it for everything. If I don't I just run in circles talking to myself and scratching my head trying to remember what I needed to do 😋

[tsranga]

27 minutes ago, FeralCatman said:

If it is off the charts then I would consider trying the antibiotics for the 2 weeks and hopefully nothing will happen from that

 

It's a pretty strong antibiotic and people have had adverse reactions (C-Diff) etc.. 

 

I used the fc-cidal dysbiocide combo. https://feedmephoebe.com/the-best-natural-sibo-treatments/

[FeralCatman]

@tsranga My nutritionist said that she can either treat it with antibiotics of which there are 3 options (none are the fluroquine antibiotics) 2 of which are locally acting and one is systemic in combination with a biofilm disruptor or she has another treatment that takes longer which may be what is in the link you posted. I still have to look all of it up and give it some more thought and will definitely check out the link you posted. I am very wary of treatments of any kind at this point so I will be very thorough before making any decisions. Thank you for the additional input. Always appreciated.

[FeralCatman]

@tsrangaI should also add that even though my nutritionist is a Registered Dietitian she is a Hollistic Nutritionist and primarily tries to approach things through the 'Food as Medicine' modality. She is actually the one who helped me make the connection between some of my previous symptoms and an over active and unbalanced ANS and she is very open to learning about psychiatric medication withdrawal. She used to work within the Boston medical system and working there is where she realized how much damage modern medicine is doing and also how much is missing out of peoples healthcare with respect to diet and nutrition. As I am finally learning you can do a lot with simple good nutrition and clean living. She is not pushy with treatments at all which I like. If she were I wouldn't be seeing her. She is very much about having a collaborative relationship. I am lucky to have a good team of providers who actually take the time to listen and think and I hold their feet to the fire whenever needed which is well tolerated by all of them. They have in fact told me they appreciate that approach. Hard to find in health care these days.

[FeralCatman]

I came up with another way to look at the 'Windows and Waves' pattern of recovery. Since I am a technical person it works better for me to help me understand what is going on. It is of course the same thing just a different way of describing it. It's more wordy and longer but it works for me in my head.

 

I look at it like a computer that crashed and needs an operating system reload. Many of you have probably been through this at some point and will know what I am talking about.

 

First the computer crashes and of course nothing works correctly, it's a mess. (Early Withdrawal)

 

Step 1 - Reload the operating system and wipe out any bad files (The First Big Wave)

 

Step 2 - Start installing all of the updates which can take a long time depending on your computer and connection speeds. The computer is now usable but not fully functional (Brief Window of Functionality As You Get Started)

 

Step 3 - Get all of the updates installed. This usually takes many steps with many reboots and restarts. As you do this you get some functionality here and there along the way. If you have to take a break some programs work, others get hung up, others do not work. Until your security is fully updated you run the risk of a virus and another crash. Until your drivers are updated your printer may not work, etc. (Windows and Waves Pattern Of Recovery)

 

Step 4 - Finish updates - The computer is back up and running and fully functional (Recovery)

 

I realized this comparison while trying to use my laptop while updating and kept getting non responsive programs. The same thing is happening to all of us. Once we are done updating we will feel better.

[FeralCatman]

UPDATE

 

Yesterday was my 1 year anniversary since quitting Seroquel. It was a great day. I went up into the mountains nearby to a mountain river with some waterfalls and a pool among the rocks at the bottom where you can take a dip. Cold water exposure is supposed to be good for increasing Vagus Nerve function. I hopped in and soaked for about 20 minutes. After I warmed up the feeling of relaxation was surprising but very welcome. Going to repeat that one as often as I can. Since my post on Friday you can add 3 normal days and a good day to the tally so things are starting to look up again. Seems like the current wave is passing. Woke up with some bad anxiety this morning but it has passed already. As always it radiated out of my abdomen.

 

Here is a list of symptoms I had while on Seroquel that have gone away. I am not healed yet but have come a long way:

 

1. Weight Gain - My max was 269 lbs. I am down to 168 lbs. Since stopping the drug I lost 30 lbs of the total 101 lbs
2. Diabetes - Gone - though I still have high fasting glucose on some days but my A1C is normal after 16 years
3. High Cholesterol - Gone
4. Inflamed sinuses - Gone
5. Light sensitivity - Gone ( I no longer have to wear sunglasses on a cloudy day)
6. Heat sensitivity - Gone
7. Inability to stay hydrated - Gone
8. Smelled like the toxic avenger when I sweat - Gone
9. Exessive sweating - Gone
10. Sleep circadian Rhythm - Mostly Normalized
11. Morning Hangover - Gone
12. GERD - Gone
13. Inability to build strength with exercise - Gone
14. Ankylosing Spondylitis Pain - Less frequent and intense off the drug
15. SED Rate - (Marker of Inflammation) - Went down as I reduced the drug and is now pretty normal
16. Thyroid Function - Improving again but not healed
17. At high doses I had hand twitching in the morning that was so bad I could not hold a coffee cup unless I held it with both hands and focused on it. If I tried the one hand approach my hand would twitch so bad I would throw the cup. I broke many dishes like this. At one point a Neurologist suspected epilepsy. - Gone

Withdrawal Issues that have passed

1. Hallucinations / delusions - Gone (These occured many times in early tapering)
2. Constant severe anxiety - Gone
3. Increased paranoia - Gone
4. Sound sensitivity like I had an amplifier in my head (I could hear my cats walking at the other end of the house) - Gone
5. Brain Zaps - Gone
6. Severe irritability - Gone
7. Crying spells - Gone
8. Aggressiveness - Gone
9. Inability to maintain body temperature - Gone

Withdrawal Issues I am still dealing with

1. Windows and Waves. Windows are getting longer with each cycle. This last wave was about 30 days long. A few months ago a window was one day and most days were pretty bad (Hopefully my updates are nearly installed now 😁)
2. Episodes of severe fatigue and brain fog. Computer work and driving are difficult on some days. Coming out of this wave this seems to be improved but not resolved.
3. Histamine Intolerance / Food Sensitivities - Diet still very restricted
4. Gut Dysbiosis and Possible SIBO
5. Anxiety / Depression that is improved but still present. I am having days free of both. Interestingly enough I am having more days in a row anxiety and depression free than I ever did while on Seroquel. The drug seems to have made me worse.
6. Mild irritability on some days.
7. Low tolerance for being around people. (that may be more just me at this point but still not entirely sure)
8. Broken Sleep, mostly because my body seems to want to get rid of excess fluid only when I try to sleep. My sleep pattern however is back to normal and staying there.
9. Morning cortisol spikes but not every day any more
10. Adrenaline surges when I urinate but much milder now and it manifests as burning skin all over my body. Weird but tolerable. Not every day any more.
11. Circulation issues (cold hands and feet). They are however improving and some days it is now normal.
12. Low physical stamina. This is improving. A few months ago I could only be busy for about an hour a day if it involved any kind of physical stress. Even walking for exercise was a no no for a bit. Now I can tolerate up to a 2 mile walk with a few pushups and air squats thrown in on most days. Not where I was but seems I will get there.
13. Intense anger over what was done to me with reassurances that what they were giving me was the path to a normal life with a smile and a pat on the back. Many of the issues I had while on the drug that are now gone I had complained about and was 'reassured' that the drugs don't do that. Now, when I really need help and answers, the system that did it has nothing to offer and tossed me in the wind and said good luck and let us know if you need more pills. Not really sure how to resolve this one. Once I am healed and can really move forward perhaps it will get better.

[FeralCatman]

I should add to the above that total time elapsed since the day I started to taper the Seroquel has been 4 years and 4 months.

[FeralCatman]

My logon frequency is going to go down for awhile. Need to just rest and relax and think about other things for a bit now that I have enough information to go on with the issues I am dealing with. I am suffering from information overload with all of the reading and research I've done recently and everything needs time to soak in and sort itself out. So, if there is a delay in answering a post that is why and I will respond as soon as I logon again. Kitty prayers to everyone and thank you all for being here. 😉✌️😸😸😸😸

[ChessieCat]

That's good that you are noticing improvements.

 

Thank you for updating and letting us know that you are taking a break from the site.

 

Please do continue updating, even if it's only every now and again.