FeralCatman: recovering from Seroquel

[Mittenraised]

Great updates! I know about gastroparesis,  my wife has it and it can be debilitating and horrible to deal with. Happy your healing!

[FeralCatman]

I just posted this extremely hopeful video for everyone because this is probably the most positive and uplifting video I have yet come across.

 

 

[FeralCatman]

UPDATE

 

Earlier tonight I had my first adrenaline surge since this summer. It wasn't anywhere near as bad as what has happened in the past but it definitely scared the crap out of me. I tried acupuncture again on Friday with no immediate negative effects but didn't feel great the next day and chalked it up to stress. Sunday morning I switched my morning Tegretol dose to all immediate release but I'm continuing to feel worse so I'm not sure if it was the acupuncture or accumulated stress or the medication swap over or a combination of all three which is probably what it is. There is no way to tell so I'm going to drop back to a 50/50 split between extended release and immediate release and just stay there for a while and that at least puts me in a position where I can taper if I need to and we'll just have to see what happens. So glad I found that video because this really sucks and it really is helping me to get through tonight and will definitely help me get through going forward.

 

[FeralCatman]

Here's another hopeful and helpful video to watch about hope.

 

 

[Catina7]

55 minutes ago, FeralCatman said:

UPDATE

 

Earlier tonight I had my first adrenaline surge since this summer. It wasn't anywhere near as bad as what has happened in the past but it definitely scared the crap out of me. I tried acupuncture again on Friday with no immediate negative effects but didn't feel great the next day and chalked it up to stress. Sunday morning I switched my morning Tegretol dose to all immediate release but I'm continuing to feel worse so I'm not sure if it was the acupuncture or accumulated stress or the medication swap over or a combination of all three which is probably what it is. There is no way to tell so I'm going to drop back to a 50/50 split between extended release and immediate release and just stay there for a while and that at least puts me in a position where I can taper if I need to and we'll just have to see what happens. So glad I found that video because this really sucks and it really is helping me to get through tonight and will definitely help me get through going forward.

 

 

I'm sorry to hear this!  I hope things get better for you soon.  One day at a time....

[tsranga]

2 hours ago, FeralCatman said:

I'm not sure if it was the acupuncture or accumulated stress or the medication swap over or a combination of all three which is probably what it is. There is no way to tell so I'm going to drop back to a 50/

 

It's most likely the medication. Acupuncture has been very effective in reducing my fight / flight response.

[FeralCatman]

It's really hard to know and previously during the worst of my withdrawal early on had an adverse reaction to acupuncture that occurred within a couple of minutes of putting the needles in so it's possible this is a delayed reaction which I seem to have delayed reactions to stress by a couple of days. I also recently learned that magnesium supplements can cause a short-term withdrawal with symptoms of increased anxiety and I did forget to take a magnesium supplement on Sunday so that could have contributed though probably not caused the problem. I had not changed the Tegretol dosage. I had, over two weeks, slowly switched over from extended release to immediate release and I'm only halfway through the transition. For the first 2 weeks I had no problems at all so it's really hard to tell.  I had a lot of anxiety about going to the acupuncture appointment and it was very stressful going through my history again and on Saturday I was not feeling very well which is before I change the med again so it's very difficult to say one way or the other. So today I started back on the 50/50 mix of immediate release and extended release and I'm just going to hold until things stabilize and then try it again when I have nothing else going on and see what happens.

[FeralCatman]

This doctor has worked at the FDA and all around and he's calling bull**** on American psychiatry.

 

 

[Catina7]

I love how Josef just tells it like it is - cold, hard TRUTH!  The field of psychiatry is a load of complete garbage, and the majority of people put on these drugs do NOT need to be on them.  It's sad and angering at the same time.  

[tsranga]

1 hour ago, FeralCatman said:

This doctor has worked at the FDA and all around and he's calling bull**** on American psychiatry.

 

Unfortunately there are many layers contributing to this situation - patients, who want a magic pill to get rid of their pain without doing the work, doctors who are bought by big pharma, and are under pressure from insurance providers that control the diagnosis and treatment, and big pharma that hardly ever tests their drugs on humans and monitors their side effects.. 

 

 

[FeralCatman]

On 1/23/2024 at 6:38 AM, FeralCatman said:

UPDATE

 

Earlier tonight I had my first adrenaline surge since this summer. It wasn't anywhere near as bad as what has happened in the past but it definitely scared the crap out of me. I tried acupuncture again on Friday with no immediate negative effects but didn't feel great the next day and chalked it up to stress. Sunday morning I switched my morning Tegretol dose to all immediate release but I'm continuing to feel worse so I'm not sure if it was the acupuncture or accumulated stress or the medication swap over or a combination of all three which is probably what it is. There is no way to tell so I'm going to drop back to a 50/50 split between extended release and immediate release and just stay there for a while and that at least puts me in a position where I can taper if I need to and we'll just have to see what happens. So glad I found that video because this really sucks and it really is helping me to get through tonight and will definitely help me get through going forward.

 

UPDATE

 

I have had a little time now to analyze the whole situation and it's pretty clear what happened. It's unlikely it was the medication because the symptoms are not consistent throughout the day and from day to day and the first two weeks I didn't notice any change at all. It was also probably not the acupuncture treatment but the visit itself to a new provider. That visit was simply the straw that broke the camel's back. As I always have I also tend to downplay the number of stressors that I'm dealing with.

 

As part of recovery from the death of my cat and really feeling a bit off only having one cat in the house I adopted two kittens. One of them had a cold that didn't manifest until a few days after I brought her home and as a result all of my cats got sick including the one that has to be sedated to go to the vet. So just as I was recovering from the death of my cat I had to deal with all of that and several trips to the vet. I brought the kittens home on separate trips to see how my current cat would adjust and the first one was fine but when I brought her sister home they initially did not get along at all which was hugely stressful for me. I managed that in the way that I always do when I bring a new cat in and it all worked out for best because they get along fine now. However I also had to deal with my existing Kitty who hates going to the vet so I had to worry about giving him a pill to sedate him and take him there but because he wasn't feeling well he had to be giving anesthesia in order to do the exam and take the blood that they needed so another huge stressor. My first cat also had roundworm so I had to give all three of them worming medication for the first 3 weeks which only involves three doses each but just one more thing on the pile. So I was worried about all three of them which of course is another stress. On top of that I am doing trauma therapy and even though it's slowing down I'm still getting these crazy memory dumps from time to time that generate a ton of emotion. Prior to acupuncture I had made the drive down to therapy which is 95 miles from where I am to see her in person and of course it was during a snowstorm which I actually enjoyed the drive but it's still a stress on the body. In the middle of all this we've had four snow storms and even though I had someone to come plow there is still work that I have to do outside and one of the storms was very wet heavy snow. At the very end of all of this just as all that was coming to a close I went to see a new provider and had to go through my whole history with her which of course was extremely stressful and then the day after I was stressed and stupidly decided to finish going through all of my keepsakes and organizing them in chronological order for my therapist to look at and memory dumped myself again big time. So when I look at it like that it is a ton of stress in a short amount of time (less than 4 weeks) but it's a whole lot more with a less severe reaction by far then what used to happen two years ago when just a long drive to the doctor was enough to have me curled up in a ball throwing up rotten food so even though it sucks there is still a huge Improvement there and I am actually managing things better. There are also still physiological changes happening because I have new symptoms Through much of process I've had cold hands and feet however now at night I can't have my feet under the blanket because they get so hot they start to sweat bullets so they have to stay out where they can stay cool which has never in my life ever happened to me so I'm sure it's another withdrawal symptom and another adjustment my body is trying to make.  I also started getting some pretty bad tension headaches after my cat died and also started getting some stabbing nerve pains in my tongue which are actually quite painful and my primary care doctor says that as nerves regrow sometimes they touch and basically short out and can cause things like that. So when you combine all this with what I talked about on my previous post about all the cellular restructuring going on because of all the side effects I had from this crazy drug it's no wonder that it upset the apple cart again. So here is the list of what's going on in short form.

 

1. Grief from the death of my cat.

2. New cats that didn't get along at first

3. Three sick cats

4. Multiple trips to the vet

5. Having to medicate a difficult to medicate cat

6. Withdrawal and self induced induced memory dumps

7. Multiple snow storms

8. A new provider and retelling my story and fortunately she was worth it

9. Trauma therapy

10. My body is still physically restructuring itself and is under stress everyday regardless.

11. Doing the medication change over has been something I've been worried about for a long time so just doing that was very stressful.

12. It's winter and without my snowshoeing and skiing and winter hiking and all my interior projects done there isn't much to occupy myself with and it's pretty icy out right now so not too many places to go for a walk

13. I live alone in the middle of nowhere so as always everything gets dealt with alone and I'm responsible for anything that happens here and don't have backup on a daily basis.

14. Fluid electrolyte balance is still out of whack so I still require a lot of extra salt and have an upcoming appointment with another new provider who is a kidney specialist to see if there's any other cause for this problem so I'm nervous about that.

 

When you look at the big picture it's no wonder I feel like crap and even though tonight I woke up with really bad anxiety I actually still got a total of 7 hours sleep which is pretty damn good considering everything that's been going on. Fortunately all my cats are now very well and happy and getting along great and we are slowing it down with the trauma therapy for now and I can take time to rest because there's also no snow in the forecast for the next couple of weeks. This will pass because now that I see the big picture I should be fairly proud of myself that I handled all that as well as I did.

 

Even though I am right now having pity party Friday healing is actually happening 😉✌️🐱🐱🐱

[Thorin]

19 hours ago, Catina7 said:

I love how Josef just tells it like it is - cold, hard TRUTH!  The field of psychiatry is a load of complete garbage, and the majority of people put on these drugs do NOT need to be on them.  It's sad and angering at the same time.  

Spot on and couldn’t agree more. Psychiatry hurts people. It helps some but it hurts many. Seems most people can’t get out once they step into psychiatry.

[Thorin]

You’re doing great FCM. All this stuff would impact anyone, let alone someone in withdrawals and still healing. You’re improving all the time mate and you’ll get through this as well. Hang in there.

[FeralCatman]

3 hours ago, Thorin said:

Spot on and couldn’t agree more. Psychiatry hurts people. It helps some but it hurts many. Seems most people can’t get out once they step into psychiatry.

There is something else I've stepped in a few times once in my bare feet that seems very similar to psychiatry. I'm not going to use the words that I normally use but it was soft and smells really bad kind of like some of the psychiatrists that I've had.

[FeralCatman]

UPDATE

Now that I am moving on from the Seroquel Saga and on to the Tegretol Saga I thought I would post my current status and what my thoughts are on what is going on.

• I still seem to have some GI issues. Gut motility seems fine but my guts are still pretty reactive to stress. The issues are much better using the Betaine HCL and Digestive enzymes.

• I still seem to be having some ongoing physiological changes going on with metabolism, circadian rhythm, body structure, etc. and this may be adding to the stress on my body as things are continuing to be repaired/altered which may be contributing to my low stress tolerances.

• My stress tolerances to both physical and psychological stress are still low.

• Pre existing PTSD / CPTSD / Trauma
• Additional PTSD due to withdrawal trauma( PTSD X3🤨 - Thanks Psychiatry - As if things weren't hard enough already)
• Fears regarding food and food reactions
• Possible mild histamine intolerance
• Fear of getting sick
• Fear of any medications
• Fear of med changes

• Fear of the medical system

• Low stomach acid
• Low digestive enzymes
• Upper body exercise still seems to trigger a fight / flight response if I do too much

• Still on 4 meds that I will have to come off of: Tegretol, Paxil, Allegra, Clonidine

• My medication load may be contributing to stress on my body which may be adding to my hypersensitivities to stress

• Low sodium and trouble with fluid balance
• IGA deficiency
• Immune deficiency
• Ankylosing Spondylitis / DISH
• Other pre-existing health issues

As you can see there is a lot of fear that has built up during the last 2 and a half years which isn't helping things. Much of this is time and therapy and slowly regaining confidence in my body and slowly returning to consistent exercise. Hot weather is also tough due to the sodium issues. Right now I have to conserve energy to be able to clear snow and run errands and go to appointments and then rest in between so I am stuck until spring as far as that goes because I need to stay functional. Some of the reactions I am having now may be due to withdrawal recovery, current meds, or anxiety from past trauma and/or withdrawal trauma. I did not have a fear of getting sick, fear of medications/med changes, or problems with exercise prior to jumping off the Seroquel so these are withdrawal induced and can be fixed over time. The GI and food issues I did not have prior to jumping off the Seroquel so the Seroquel may have been masking some stuff and it was also causing a great deal of stress on my liver, kidneys, GI Tract and pancreas (Diabetes) and if repairs there are not complete then that could cause an enzyme deficiency or it could just be from the massive amount of physical and emotional stress I've been enduring for the last 2 and a half years. There is no way to sort all of this out for sure other than to start tapering again.

Some of this may be the medications I am still on. I will list the issues in order of the most problematic medication first.

Tegretol  

• Still causing a mild immune deficiency. I am low on IGG, and IGG Subclasses 1 and 3 but they are just on the cusp of being low normal. When on high dose Tegretol the numbers were much worse. They are stable now. These are needed to fight viruses and pneumonia. I also have an IGA deficiency that is unrelated to meds. This is where my fear of getting sick is partly coming from.
• Reacts with tons of other meds. Many I cannot take due to this med so my options if I get sick are limited.
• Known to be a Mast Cell Destabilizer (Histamine Liberator) so this may be contributing to my gut issues. It also interferes with DAO production and function and may be contributing to my GI issues. This may also be why my need for allergy meds went up after I was put on it.
• This is the most likely culprit for my issues with low sodium and for my fluid balance being off. I am seeing a Kidney specialist in February to try and sort this out.

 

Paxil

• Restricts my use of NSAIDS due to GI Bleeding so my Ankylosing Spondylitis is hard to treat when needed
• In the past when on high dose Paxil I had heavy GI bleeding and was taken off it due to High Ammonia. I didn’t find out until after I went back on it again years later that High Ammonia is not a Paxil side effect but a sign of internal bleeding caused by the Paxil. Had I known I never would have agreed to go back on it again.

Allegra

• Interferes with DAO production and function and may be contributing to GI issues
• Possibly affecting stomach acid production

Clonidine 

• No known issues

So you can see that the Tegretol is causing the most issues and needs to go next. As I said this is all very hard to sort out but this is the best picture I have of where I am and how I should move forward. 😉✌️😺😺😺

 

 

 

[FeralCatman]

UPDATE

 

Yesterday I went for blood work ordered by my rheumatologist. I found something interesting.

 

Each time I have had a major upset of some sort, December - April 2022, January 2023, July - August 2023 there have been major spikes and dips in parts of my blood work, different each time.

 

The first time it was blood sugars rapidly normalizing and changes to thyroid function as well as changes to BP, heart rate, circadian rhythm, and massive weight loss (30 lbs in a matter of weeks now stabilized at 165-167).

 

The second time was a short upset but my kidney values and sodium,suddenly diverged sharply and then started to recover as I felt better. My sodium values had been slowly drifting down since I started recovering from the first upset after the major metabolic changes happened.

 

The third time was last summer and my liver values suddenly diverged sharply and are now recovered.

 

Each time I also saw changes in my CBC values that recover each time.

 

No changes were being made to meds or diet or anything else in my routine other than what I was forced to do during the first upset.

 

What all of this means to me is that each upset is accompanied by some sort of physiological/neurological changes happening that you can see in the blood work as a result of recovering from all of the changes made to my brain/body by the Seroquel over the years. Last summer when my liver values suddenly changed that probably changed the way I am metabolizing my remaining meds and that is what ended up causing such a severe relapse. So it's possibly a combination of recovery and recovery induced withdrawal from my current meds. That may also be what is causing the sodium issues because if my liver metabolism changed the way I metabolized my current meds  then it would make sense that I could develop new side effects from an existing med as a result.

 

This is all just an observation but certainly an interesting one. Hopefully these changes are nearing their conclusion.

 

I also take this as another indication of my body healing and rebuilding itself. So, healing is happening. 😉✌️😺😺😺

[FeralCatman]

UPDATE

 

I want to add something else.

 

This time last year I started having trouble with digestion again and had to start putting my food through a blender and my diet got really restricted for a while. I started having trouble with things like garlic and onions and kale. I grew a ton of onions and had to give most of my crop away. I also had trouble with potato and had to give most of that crop away as well. Not the case this year as I eat garlic and onion with every meal and potatoes are just fine and everything else for the most part seems okay other than the issue with dairy which I'll test again later on and see what happens and the few items on my allergy test that show low level Sensitivity I still avoid until that is gone. So this year my onion and potato crop went where it was supposed to, in my belly, unlike last year where it went to the neighbors. This week I will be finishing the last of the onions that I grew but still have plenty of potato. Yet another sign of healing in progress.

[Catina7]

4 hours ago, FeralCatman said:

went where it was supposed to, in my belly

 

HAHA...love it! .  Happy to hear all your good news FCM!  

[FeralCatman]

On 1/23/2024 at 1:09 PM, FeralCatman said:

It's really hard to know and previously during the worst of my withdrawal early on had an adverse reaction to acupuncture that occurred within a couple of minutes of putting the needles in so it's possible this is a delayed reaction which I seem to have delayed reactions to stress by a couple of days. I also recently learned that magnesium supplements can cause a short-term withdrawal with symptoms of increased anxiety and I did forget to take a magnesium supplement on Sunday so that could have contributed though probably not caused the problem. I had not changed the Tegretol dosage. I had, over two weeks, slowly switched over from extended release to immediate release and I'm only halfway through the transition. For the first 2 weeks I had no problems at all so it's really hard to tell.  I had a lot of anxiety about going to the acupuncture appointment and it was very stressful going through my history again and on Saturday I was not feeling very well which is before I change the med again so it's very difficult to say one way or the other. So today I started back on the 50/50 mix of immediate release and extended release and I'm just going to hold until things stabilize and then try it again when I have nothing else going on and see what happens.

UPDATE

 

Yesterday I tried switching the morning dose of Tegretol again to 100% immediate release and it doesn't seem to make any difference.  I am just getting up now at 5:30 a.m. and last night I was fine and no adrenaline surges so it definitely was not the drug that caused the problem before. The previous night and a little bit yesterday morning I had some very low grade anxiety and then it cleared up again and I am now starting my fifth day of feeling totally Zen.  About a week and a half ago I started in with a flare up of my ankylosing spondylitis so I'm in a bit of pain right now and that could explain the anxiety and a little bit of reduced sleep simply because I can't get comfortable right now and refuse to take anything so I'm just kind of gutting it out because I know these episodes pass. So that narrows it down to either accumulated stress or I am still reacting to acupuncture. I will try testing the acupuncture again after I find out if my insurance is going to reimburse me which will be at least a month. If I continue to do okay through the day today then tonight I'm going to switch the night time dose to 100% immediate release and the crossover will be complete and then I can start tapering after I see my kidney doctor in 2 weeks and my body has had time to adjust.

 

It feels really good to finally be making progress getting this crap out of my system again it really helps the morale. 😉✌️😻😻😻

[Thorin]

45 minutes ago, FeralCatman said:

UPDATE

 

Yesterday I tried switching the morning dose of Tegretol again to 100% immediate release and it doesn't seem to make any difference.  I am just getting up now at 5:30 a.m. and last night I was fine and no adrenaline surges so it definitely was not the drug that caused the problem before. The previous night and a little bit yesterday morning I had some very low grade anxiety and then it cleared up again and I am now starting my fifth day of feeling totally Zen.  About a week and a half ago I started in with a flare up of my ankylosing spondylitis so I'm in a bit of pain right now and that could explain the anxiety and a little bit of reduced sleep simply because I can't get comfortable right now and refuse to take anything so I'm just kind of gutting it out because I know these episodes pass. So that narrows it down to either accumulated stress or I am still reacting to acupuncture. I will try testing the acupuncture again after I find out if my insurance is going to reimburse me which will be at least a month. If I continue to do okay through the day today then tonight I'm going to switch the night time dose to 100% immediate release and the crossover will be complete and then I can start tapering after I see my kidney doctor in 2 weeks and my body has had time to adjust.

 

It feels really good to finally be making progress getting this crap out of my system again it really helps the morale. 😉✌️😻😻😻

That’s good news mate. You’re making good progress!

[littlebird]

4 hours ago, FeralCatman said:

Yesterday I tried switching the morning dose of Tegretol again to 100% immediate release and it doesn't seem to make any difference.  I am just getting up now at 5:30 a.m. and last night I was fine and no adrenaline surges so it definitely was not the drug that caused the problem before.

Woohooooo, love a win!

 

4 hours ago, FeralCatman said:

It feels really good to finally be making progress getting this crap out of my system again it really helps the morale. 😉✌️😻😻😻

Thank you for sharing! I think it also gives the rest of us a boost in morale to hear one of our compatriots is doing better. 🥳

[Mittenraised]

7 minutes ago, littlebird said:

 

 

Thank you for sharing! I think it also gives the rest of us a boost in morale to hear one of our compatriots is doing better. 🥳

Absolutely 💯! It's the successful updates that give you a boost when your struggling. Thanks for your detailed posts, they are just what I needed today.

[FeralCatman]

BIG UPDATE

 

(Trigger Warning - Profane Acronyms In Use 😋)

 

I just woke up and had 7 hours of rest and I switched the night time dose of my Tegretol  last night to 100% immediate release. My head didn't explode and I actually slept four straight hours in a row and no adrenaline surges and no anxiety when I woke up. So I am now on 100% generic carbamazepine immediate release and I'm free to taper as I see fit.

 

This has been weighing on me very heavily for a long time wondering what my body would do with this transition and it's been a huge fear that's caused a lot of stress. It all turned into a big fat nothing and all that fear and stress is gone. At the moment the only words that fit are "OMFG I'm free!!!!!😁"

 

Now that this is done the rest of my taper is so much more straightforward and I don't have this transition weighing over me down the line it's just a straight cut and hold taper and things just became so much simpler. All I can think about right now is taking that bottle of Tegretol extended release that I now no longer need down to the mental health clinic and chucking it at my so called "Treatment Team" using my best softball fastpitch and saying "you can have these back MF's I don't need these anymore" and "GFY!!!!"

 

It's a nice fantasy but what's really going to happen is I'm going to throw them in the disposal bin at Walgreens and say goodbye to them.

 

Now that this fear and stress is gone I don't have to feel as nervous about mucking around with diet a little bit as well as exercise because now recovering from any upset will certainly be more straightforward as well. Another variable nailed down and removed. So much stress just left my life it's just hard to describe but I'm sure everybody who reads this on this forum will understand.

 

I'm going to hold until after I see the kidney doctor in 2 weeks and then time to get this S*** out of my system. Onward and upward and healing is happening 😁✌️😻😻😻

[Thorin]

Woohoo that’s freaking awesome news! Onwards and upwards!

[Catina7]

That is HUGE news....I'm very happy for you that you can begin a new chapter in your tapering journey!  😻

[FeralCatman]

UPDATE

 

So I just couldn't wait to try out my new laboratory scale and I made the first batch of pills of 190 mg each for a 5% cut and if I'm okay two weeks after that cut I'll try another 5% cut and then see how I do and take it from there. Dr Horowitz said that most likely I'll be able to go faster than 10% with this medication and that it shouldn't be too bad to come off of but I'm going to take it slow. If I am okay after the first month and don't get any withdrawal symptoms then the second month I will try a 6% cut every two weeks and see where I'm at and so on and so on. It's very exciting to be moving forward again but at the same time kind of scared to death giving everything I've gone through so far. But I'm definitely getting closer to really being free again. 😁

[FeralCatman]

UPDATE

 

Saw the kidney doctor yesterday and he was really nice. He confirmed the ongoing low sodium is a condition called SIADH (Syndrome of Inappropriate Anti-Diaretic Hormone Secretion) that is causing the low sodium. So it is a brain problem not a kidney problem. He said that head injury I had last January was not likely the cause of the problem it was just a coincidence because he has only seen that happen with severe traumatic brain injury with people in the hospital and it only lasts a couple of weeks and he's never seen or heard of that happening outside of that circumstance. So the low sodium is either the medication (listed side effect of Paxil and Tegretol - More common with Tegretol) or it's an anomaly that's happening on its own which means it could also be withdrawal and there's no way to know one way or the other except by reducing the medication. He told me I need to restrict to 1.5  liters of fluid a day and continue with what I'm doing with the salt. I am doing my first Tegretol reduction this coming Sunday.

 

I'm glad I went because now I have 2 specialists, an immunologist and a nephrologist, who confirm that I have major side effects from this medication so nobody can say a thing about me coming off of it. I am going to continue making every effort to document all of this stuff in detail in case anybody ever wants to question any of it there won't be any way for them to do it. I would say at this point my case for avoiding these medications is Rock Solid and it will be interesting to see what the genetic test (Genesight) I just had done comes back as and I'm hoping that it indicates problems with a lot of psych meds because that will definitely go into my record as well.

 

I am so sick of being sick because of these idiots. On to the next taper 😉✌️😺😺😺

 

[FeralCatman]

I just posted the following about the stomach medication Omeprazole.

 

 

 

[FeralCatman]

UPDATE

 

Tomorrow I start the taper of my Tegretol so I thought I would do a brief recap of what it took to get to this point.

 

1. My Seroquel taper started on April 1st 2018.

 

2. August 1st 2021 I jumped off the Seroquel.

 

3. Total time tapering was 3 years and 4 months

 

4. Total recovery time has been 2 years 6 months and 17 days

 

5. Total time on this journey so far has been 5 years 10 months and 17 days and Counting.

 

Some of the things I had been dealing with on the medication are now gone and these include.

 

1. A left bundle branch block in my heart

 

2. Type 2 diabetes

 

3. High cholesterol and high blood pressure

 

4. Thyroid function improved

 

5. I lost another 30 lb (in only 1 month at the 6 month mark) since I got off the drug so total of a little over 100 lb since my Peak

 

6. Bone pain and shooting nerve pains

 

7. Delayed Phase Sleep Disorder

 

8. REM behavior disorder

 

9. No more need for stomach meds

 

10. And a whole host of many smaller issues all are gone or greatly improved so it's amazing how badly this stuff can affect you in a million different ways that you can never pick up on until you get off the med. One thing is clear looking at the above list is that this medication was killing me so to say that it would prevent suicide is just silly because it just takes a quick death and extends the suffering out over a few decades instead and yet you're too sedated to know the difference which is just crazy to think that anybody would believe that this could be helpful. It's so scary that of all the doctors I saw over the years chasing down all of these crazy symptoms not one of them except my primary care doctor , who I didn't listen to early enough, ever mentioned that any of this stuff could be the medication it was always blamed on my body. I was also told it was all permanent and could only be managed. It's now pretty clear that was total bull****. 🤬

 

Some of the severe symptoms I experienced coming off this and recovering were psychosis, severe anxiety and adrenaline surges, severe depression, SI, badly disrupted sleep for a while. gastroparesis. loss of temperature control,  extremely high blood pressure and loss of heart rate control, badly blurred vision, brain zapps, nocturia (ongoing due to Tegretol and SIADH), reactions to various Foods that mimicked an allergic reaction but we're not an allergic reaction and this includes water, tinnitus, multiple trips to the emergency room, and a whole host of other things have happened that are just pretty crazy and without going through this you would never expect that your body could do the things that it will do to you when you're nervous system is dysregulated it's been a pretty crazy ride.

 

I am of course still recovering but I just had five straight days of the most peaceful and Zen days that I've ever had in my life and I know there will be more to come. My stress tolerances are still low and I'm still feeling my way through diet and exercise but I'm not pushing it right now because I want to focus on this next taper and once I see how that goes I can decide what to do next. I am back to taking vitals every morning including an EKG and maintaining careful notes so I'll be able to catch any changes that happen immediately as this process continues.

 

This is a very long hard journey but it can definitely be done and if you are lucky enough to find all the information here and on the other available websites about how to properly come off these meds you can certainly save yourself a lot of pain and I wish I had known the things that I know now a few years ago and more than likely I could have avoided some of what I've been through but oh well that's life and everything's a learning experience. I'll post another update when I know what's going to happen with this Tegretol taper.

 

Onward and upwards and healing is happening 😉✌️😻😻😻

[FeralCatman]

4 hours ago, FeralCatman said:

UPDATE

 

Tomorrow I start the taper of my Tegretol so I thought I would do a brief recap of what it took to get to this point.

 

1. My Seroquel taper started on April 1st 2018.

 

2. August 1st 2021 I jumped off the Seroquel.

 

3. Total time tapering was 3 years and 4 months

 

4. Total recovery time has been 2 years 6 months and 17 days

 

5. Total time on this journey so far has been 5 years 10 months and 17 days and Counting.

 

Some of the things I had been dealing with on the medication are now gone and these include.

 

1. A left bundle branch block in my heart

 

2. Type 2 diabetes

 

3. High cholesterol and high blood pressure

 

4. Thyroid function improved

 

5. I lost another 30 lb (in only 1 month at the 6 month mark) since I got off the drug so total of a little over 100 lb since my Peak

 

6. Bone pain and shooting nerve pains

 

7. Delayed Phase Sleep Disorder

 

8. REM behavior disorder

 

9. No more need for stomach meds

 

10. And a whole host of many smaller issues all are gone or greatly improved so it's amazing how badly this stuff can affect you in a million different ways that you can never pick up on until you get off the med. One thing is clear looking at the above list is that this medication was killing me so to say that it would prevent suicide is just silly because it just takes a quick death and extends the suffering out over a few decades instead and yet you're too sedated to know the difference which is just crazy to think that anybody would believe that this could be helpful. It's so scary that of all the doctors I saw over the years chasing down all of these crazy symptoms not one of them except my primary care doctor , who I didn't listen to early enough, ever mentioned that any of this stuff could be the medication it was always blamed on my body. I was also told it was all permanent and could only be managed. It's now pretty clear that was total bull****. 🤬

 

Some of the severe symptoms I experienced coming off this and recovering were psychosis, severe anxiety and adrenaline surges, severe depression, SI, badly disrupted sleep for a while. gastroparesis. loss of temperature control,  extremely high blood pressure and loss of heart rate control, badly blurred vision, brain zapps, nocturia (ongoing due to Tegretol and SIADH), reactions to various Foods that mimicked an allergic reaction but we're not an allergic reaction and this includes water, tinnitus, multiple trips to the emergency room, and a whole host of other things have happened that are just pretty crazy and without going through this you would never expect that your body could do the things that it will do to you when you're nervous system is dysregulated it's been a pretty crazy ride.

 

I am of course still recovering but I just had five straight days of the most peaceful and Zen days that I've ever had in my life and I know there will be more to come. My stress tolerances are still low and I'm still feeling my way through diet and exercise but I'm not pushing it right now because I want to focus on this next taper and once I see how that goes I can decide what to do next. I am back to taking vitals every morning including an EKG and maintaining careful notes so I'll be able to catch any changes that happen immediately as this process continues.

 

This is a very long hard journey but it can definitely be done and if you are lucky enough to find all the information here and on the other available websites about how to properly come off these meds you can certainly save yourself a lot of pain and I wish I had known the things that I know now a few years ago and more than likely I could have avoided some of what I've been through but oh well that's life and everything's a learning experience. I'll post another update when I know what's going to happen with this Tegretol taper.

 

Onward and upwards and healing is happening 😉✌️😻😻😻

I left out one important statistic.

 

I was first medicated Sometime Late spring of 1994 so I'll assume May 1994. Thus far I have been medicated for 29 years and 8 months and Counting.

 

Even after all of that time on all those medications and as badly as my body was messed up somehow or other my body is still finding its way back to where it wants to be which means if my body can do it so can yours 😉✌️😻😻😻

[FeralCatman]

Chris Paige is the withdrawal coach that I primarily deal with and he is also a licensed clinical social worker and a trauma therapist. When he got taken off of benzodiazepines at a rehab and they did it in just a matter of days it threw him into acute akathisia for 3 years. He survived and now does coaching and therapy and started The Institute for Akathisia Research. He made a music video that is for people going through akathisia and drug withdrawal and I thought everyone would like it. He also did a guided meditation which Catina 7 is going to post.

 

 

[Catina7]

3 hours ago, FeralCatman said:

which Catina 7 is going to post.

 

Oop, better get to it then!  I'll post this today.

[Catina7]

4 hours ago, FeralCatman said:

He made a music video that is for people going through akathisia and drug withdrawal and I thought everyone would like it

 

What a great video!  It's nice to see him in such a great place considering all that he's been through.  It's people like this that give the rest of us HOPE!  

[FeralCatman]

@Frogie  I did my first drop of 5% on the Tegretol. Of course a few days before I had another one of those memory dumps and was okay for a couple of days and then got hit with an uptick in symptoms and some really bad nightmares  but then felt better the day I did the drop. I am now having off and on anxiety pretty bad and I've gotten a few more memory dumps and a lot of emotion again which is the same thing that was happening periodically well before I did this drop. One thing that has happened just from dropping 20 mg is that I am not peeing like crazy now which has been an issue for awhile and is a suspected side effect of Tegretol so if this trend keeps up I have to assume that just that small amount was affecting my kidneys which this drug is known to do. Wondering what your input is about how to tell if this was a wave that was just happening or if this was due to the drop in medication. My take on it is that it is probably just a wave that is coincidence because symptoms started before but I'm not really sure how to tell one way or the other or if there is even any way to actually tell. My current plan is to hold in place until this passes but I'm wondering if you have any advice either from yourself or the other moderators.

[FeralCatman]

@Frogie  Well you can scratch that last question I have my answer. I am now recovering consistent with previous patterns and I've been able to identify the triggers or if not triggers at least the identifiers that there was a problem and I just did not catch on to it right away so I'm all set. This is definitely not a medication related issue it is just another wave due to stress. Additionally the urinary issues I've been struggling with for two years now have turned out not to be withdrawal related but were due to the Tegretol. Tegretol and Seroquel are not supposed to be prescribed together and there is a black box warning that states this and the reason is because they use the same enzyme in the body to be metabolized so they are competitive. When I was on both drugs I didn't have the issue but once the Seroquel was out of my system and my liver recovered a little bit I think the problem was just unmasked and has probably been there all along because the way I metabolize the Tegretol changed which is also why I am now developing some new side effects from it since it is no longer competing in my metabolism with another medication. It just took time for this to manifest as my body recovered and my metabolism changed and improved.  So with recovery also came a new set of problems. I think this is the reason my urinary symptoms have fluctuated because on a day-to-day basis these medications can be metabolized and distributed differently and I was just on the dosage borderline between having a problem and not having the problem and when I would metabolize the medication better the problem became more apparent and then on days when I didn't metabolize it as well the problem became less apparent so this is something that probably would never have gone away had I not reduced the medication.

 

Holding for the length of time that I have is still the right thing to have done because my body needed to recover in many different ways before it would be ready to handle these reductions again so I have no regrets about that I know it was the right thing to do but now moving forward is the right thing to do and I will continue to post updates and let people know how this taper is going but this first drop doesn't seem to be that bad.

[FeralCatman]

One of the possible triggers for this wave is actually the stress of just restarting a taper again because of everything I've been through it's certainly left a mark and doing the medication crossover and starting this new taper has probably generated a bit of a PTSD response which of course aggravated my already aggravated nervous system. So for those who are tapering multiple medications who go through a very difficult time be aware that this is a possibility so you can consider it and possibly recognize it if and when it happens to you.