FeralCatman: recovering from Seroquel

[PortugueseSea]

Glad to see you are doing better man!

 

 

 

 

[FeralCatman]

Here is a study regarding psychiatric medications and hyponatremia and it says that this is a relatively common phenomenon. Which class of medications is most likely to cause this is widely debated but the most references that I found were for the carbamazepine or oxcarbmazepine being most likely. This study says SSRI's and Trileptal are the most likely culprits. Other studies say lamictal, carbamazepine, and Trileptal are most likely. Determining which one for sure is really a crap shoot. The only true way to know is to take it away and see what happens.

 

https://www.sciencedirect.com/science/article/abs/pii/S0022399921002993?via%3Dihub

[FeralCatman]

UPDATE

 

I have been researching carbamazepine withdrawal. There is a whole lot more information available about this medication and withdrawing from it then is available for Paxil or for the Seroquel so that is very good news and I have a bit more information to draw upon. Outside its use in psychiatry it's used for many other reasons and most people don't seem to have too much trouble coming off of it even if they come off of it in a relatively short period of time such as 12 weeks. There have actually been quite a few studies done on withdrawing this medication and there are some withdrawal effects but they don't seem to be anywhere near as severe as what I just went through. So this gives me a little bit of Hope that coming down from this medication won't be the nightmare that Seroquel was and if things go okay in the beginning I may even be able to come off it quicker than what I am anticipating but we shall see I am certainly not going to jump off that Cliff if I don't have to.  Also if this problem starts getting worse and I end up having to do a rapid taper or CT it makes me feel a little bit better about that possibility as well. In addition to my providers I have now spoken also to a couple of Pharmacists and the consensus is unanimous in that carbamazepine is the most likely culprit causing this hyponatremia problem that I am having so that makes me feel a bit better to know that I am, most likely, tapering the right medication first. In Reading several studies I have also found that with carbamazepine the hyponatremia has been found to be dose dependent so when I start reducing the dose it should start to get better.  All hopeful news so in 3 weeks once I do the crossover I will find out if this is all correct. Lets hope so.

[FeralCatman]

I just posted my Seroquel Success story. Here is a link to that post.

 

 

[FeralCatman]

UPDATE

 

I had a follow-up blood test this morning and with the extra super duper salt I am now consuming I got the number back up to 137 and everything else normalized so that's great but it is taking a huge amount of salt to do it. I am using so much sea salt now that the ocean salinity May in fact be dropping as we speak. I also figured out that along with supplementing potassium starting last fall I also started cutting way back on adding salt to things and I think what has happened over the years from having had a high sodium diet is it just masked the problem and as I started eating healthier the problem became apparent. This explains the tremendous salt Cravings I have had for many many years. I also received the necessary medications to do the crossover from extended release carbamazepine to immediate release carbamazepine in the mail today so I'm going to start that tomorrow. That may fact be the fastest I have ever seen the VA respond to something like this . Hopefully it goes well.

[FeralCatman]

UPDATE

 

I have started the switch over from Tegretol extended release to Tegretol immediate release. (Carbamazepine). I started it Sunday night and so far so good.

 

I spoke to my primary care doctor today to discuss recent blood work which came back pretty good with all the added salt. I asked him about more testing and all the potential causes for this and he said that while being on these medications there's going to be no way to sort out the root cause of the hyponatremia regardless of how much testing we do. So for now it is managing the hyponatremia and I came up with a way to figure out where my safe zone is as far as salt goes. My blood pressure due to the metoprolol has been low around 108/65 on average. As I am experimenting with salt dosages I have found that if I consume 4,500 mg of sodium at a minimum which is the equivalent of 11.58 G of salt daily it causes a consistent slight elevation in my blood pressure to about 115/75. This dosage also gives me much better looking blood work results. I'm going to continue to experiment and I'm keeping a salt log in addition to my other vitals to try and figure out where my safe dosages are for the salt and it's starting to look like 4,500 mg sodium daily is going to be the minimum. I am using my SmartWatch to monitor my blood pressure and so if I am outside sweating and my blood pressure starts to drop a little bit I know I've done too much and I'm starting to run out of salt and it's time to go in and rest. It's not the ideal way to try and manage something but it's the only measurable metric that I have to help keep me safe and out of the hospital. Quite honestly given how sick I was the last time this happened this whole thing really scares the bejesus out of me. This is not something I am recommending for anybody to ever try on their own this needs to be done in coordination with your doctor if you ever run into the hyponatremia issue because you can easily make yourself very sick or worse. That said if you do run into this issue and you end up having to manage it for a while this is an option that you can fiddle around with to help monitor your electrolyte levels if you ever need to. Again I can't stress enough don't do this on your own, do it with your doctor on board. I also have the help of a nutritionist to help me come up with all the numbers I started with. She used to work at a hospital and has dealt with this many times with hospital patients so it was good to have her to help out with this. I also found a private lab, Quest Diagnostics, that is only about  1 hour from here. A comprehensive metabolic panel is only $49 online so for the next few weeks I will just go get a test done every 2 weeks or so to check my electrolyte levels on my own.

 

[FeralCatman]

I would like to add one thing to that last post. The hope is that as I reduce the dosage of the carbamazepine this problem will go away and of course we don't know at what dose that will happen but what is known is that the side effect tends to be dose dependent. If after a significant dosage reduction there is no improvement then at that point I may need to go see a nephrologist to try and determine what is going on.

[FeralCatman]

18 hours ago, FeralCatman said:

UPDATE

 

I have started the switch over from Tegretol extended release to Tegretol immediate release. (Carbamazepine). I started it Sunday night and so far so good.

 

I spoke to my primary care doctor today to discuss recent blood work which came back pretty good with all the added salt. I asked him about more testing and all the potential causes for this and he said that while being on these medications there's going to be no way to sort out the root cause of the hyponatremia regardless of how much testing we do. So for now it is managing the hyponatremia and I came up with a way to figure out where my safe zone is as far as salt goes. My blood pressure due to the metoprolol has been low around 108/65 on average. As I am experimenting with salt dosages I have found that if I consume 4,500 mg of sodium at a minimum which is the equivalent of 11.58 G of salt daily it causes a consistent slight elevation in my blood pressure to about 115/75. This dosage also gives me much better looking blood work results. I'm going to continue to experiment and I'm keeping a salt log in addition to my other vitals to try and figure out where my safe dosages are for the salt and it's starting to look like 4,500 mg sodium daily is going to be the minimum. I am using my SmartWatch to monitor my blood pressure and so if I am outside sweating and my blood pressure starts to drop a little bit I know I've done too much and I'm starting to run out of salt and it's time to go in and rest. It's not the ideal way to try and manage something but it's the only measurable metric that I have to help keep me safe and out of the hospital. Quite honestly given how sick I was the last time this happened this whole thing really scares the bejesus out of me. This is not something I am recommending for anybody to ever try on their own this needs to be done in coordination with your doctor if you ever run into the hyponatremia issue because you can easily make yourself very sick or worse. That said if you do run into this issue and you end up having to manage it for a while this is an option that you can fiddle around with to help monitor your electrolyte levels if you ever need to. Again I can't stress enough don't do this on your own, do it with your doctor on board. I also have the help of a nutritionist to help me come up with all the numbers I started with. She used to work at a hospital and has dealt with this many times with hospital patients so it was good to have her to help out with this. I also found a private lab, Quest Diagnostics, that is only about  1 hour from here. A comprehensive metabolic panel is only $49 online so for the next few weeks I will just go get a test done every 2 weeks or so to check my electrolyte levels on my own.

 

UPDATE

 

So, after doing a bit more reading, there is more to this story than above. Here is the message exchange with my PCP from today which explains what needs to be done to manage this.

 

_____________________________________________________________________________________________________________________

********** 8:55 AM (4 hours ago)

Did some more reading and have one last question. In order to stay hydrated it looks like you should be balancing fluid in with fluid out. I have been peeing more than I have been taking in at lower salt doses which has left me dehydrated due to the hyponatremia. 12 g of salt equivalent (added salt plus food sodium) slightly raised my BP to 116/83 P56 but I still peed more than I took in. Yesterday I took in 13.95 g Salt Equivalent (added salt plus food sodium) and my BP this morning is 122/80 P55. At lower doses I pee way more than I take in and my BP goes down to 110/72 or lower on most days. Changes are not stress related they are definitely salt dose related. So, in addition to needing 12g salt equivalent or more I should be taking in enough sodium to balance fluid in to fluid out. Is that correct? If so then measuring urine output daily will also help me keep things balanced out.

Dr. **** 9:27 AM (4 hours ago)

In general, yes, you fluid volume intake should be at least as much as urine output if not more. Don't forget you also lose fluid through sweat, evaporation and breath.

********** 10:33 AM (3 hours ago)

Okay so that means that at lower salt doses when I'm peeing a lot more than what I take in by drinking and eating not only was my sodium going low but I was getting very dehydrated. I currently measure out 1500 ml of water every morning and make sure I drink it all throughout the day in addition to what is in my food which is about 2,000 ml total a day. So in addition to the added salt if I am putting out more than 2 L of urine a day I need to increase my fluids to match or slightly exceed that is that correct? It certainly seems like my urine volume goes up to try and concentrate the sodium since when I greatly increase the salt my urine volume goes down.

Dr. **** 11:29 AM (2 hours ago)

Yes that is correct.

********** 11:37 AM (2 hours ago)

So here's the last question and that is once I establish my Baseline need for salt and fluid which I'm pretty close to getting then I really need to account for sweat. I looked that up and the salt content of sweat on average is 0.9 G per liter so all the water that I drink above my Baseline should be that or slightly saltier is that correct?

Dr. **** 11:43 AM (2 hours ago)

Not necessarily. If you are supplementing with oral sodium and also the sodium in food, your kidneys should be able to balance. You do need to drink free water as well.

********** 11:58 AM (1 hour ago)

So when I go outside I should just drink plain old water above and beyond my Baseline intake of fluids and salt to make up for the sweat is that correct?

Dr. **** 1:09 PM (43 minutes ago)

Yes, correct.

********** 1:29 PM (23 minutes ago)

Thank you. Thats all the info I needed. I made log sheets to track everything and in a couple of weeks after my next blood draw I will send them to you for evaluation.

 

____________________________________________________________________________________________________________________

 

So, here is the plan.

 

For the next 2 weeks I will measure and record salt dose, fluid in, fluid out, and BP.

 

As I gain information I can adjust the salt dosage so that my fluid in and fluid out are roughly the same with fluid in being slightly higher to account for sweat, breath, and evaporation.

 

Once I have that down then that will be my baseline salt / fluid intake and then when I have to go outside to get things done or exert myself in some way I will just drink regular water to account for sweat.

 

Log keeping will continue until I get things down to some consistent level.

 

I got this idea from a critical care guide for hospitalized patients to see how they do it.

 

So, if you get hyponatremia you now have the basic information on how to manage it other than someone telling you to restrict fluids, stay hydrated, and eat more salt.

 

Again, do not do this on your own if you develop hyponatremia. It can be dangerous. This information is only to give you a starting place for a conversation with your doctor if you ever need it. Work with your doctor if this happens with you. 😉✌️😺😺

[FeralCatman]

@Frogie I started my crossover from carbamazepine XR 200 mg twice daily to 200 mg IR twice daily. This past Sunday night I started the process by switching to 100 mg of XR and 100 mg of IR at night and then 200 mg of XR in the morning.  it seemed to be okay until last night.  Last night about 30 minutes after I took my night dose I got horrible anxiety and slept horribly and had to pee like crazy about every hour.  it is the same symptoms that I had early in my Seroquel withdrawal and anxiety came in surges every time I had to pee.  It did not happen again this morning after I took my morning dose of the 200 mg XR but tonight the same thing happened after I took the mixed dosage of 100 mg XR and 100 mg IR.  I don't know if this is a drug reaction of some sort or if this is triggering a wave and I don't know how to tell the difference so I am looking for guidance here. The symptoms are pretty bad so I am wondering if I need to go back to the 200 mg XR to stabilize and then try again. It is suspected by my doctors that this is the drug that is causing the hyponatremia so there is a need to get off of it. Definitely need help with this one because I don't know what to do.

[FeralCatman]

I will add to that last post that getting up and moving around seems to make it a little better as well as sitting up versus lying down which also happened early in withdrawal. The overall dosage of 400 mg daily has not changed only the formulation of the night time dose has changed.

 

[Thorin]

Sorry you’re going through that FCM. Remember it’s temporary!

[FeralCatman]

38 minutes ago, Thorin said:

Sorry you’re going through that FCM. Remember it’s temporary!

@Thorin Thanks man. So hard to know what the cause of this is with everything going on as it may or may not be due to the medication switch. Wondering about the idea of going back to 200 mg XR to stabilize and then switching to XR capsules instead and figure out the 3 different beads that are in the capsule and just start pulling beads instead. Didn't really want to do that but I might not have a choice. Was feeling wonky again this afternoon with the headache and nausea. Same as what  happened before I started this switch so I was in the ER again today and fortunately everything was fine this time.

[Thorin]

55 minutes ago, FeralCatman said:

@Thorin Thanks man. So hard to know what the cause of this is with everything going on as it may or may not be due to the medication switch. Wondering about the idea of going back to 200 mg XR to stabilize and then switching to XR capsules instead and figure out the 3 different beads that are in the capsule and just start pulling beads instead. Didn't really want to do that but I might not have a choice. Was feeling wonky again this afternoon with the headache and nausea. Same as what  happened before I started this switch so I was in the ER again today and fortunately everything was fine this time.

It’s almost harder when the results come back with no issues. It’s easier when it’s something concrete that you can tackle and do something about. I feel for you man. I’m going in to have a suite of bloods done tomorrow but fully expect everything to come back fine. That stresses me more than the thought of there actually being something wrong. Just remember this journey is all about putting one Foo in front of the other and you get there in the end. You’ve already come such a long way.

[FeralCatman]

7 hours ago, FeralCatman said:

@Frogie I started my crossover from carbamazepine XR 200 mg twice daily to 200 mg IR twice daily. This past Sunday night I started the process by switching to 100 mg of XR and 100 mg of IR at night and then 200 mg of XR in the morning.  it seemed to be okay until last night.  Last night about 30 minutes after I took my night dose I got horrible anxiety and slept horribly and had to pee like crazy about every hour.  it is the same symptoms that I had early in my Seroquel withdrawal and anxiety came in surges every time I had to pee.  It did not happen again this morning after I took my morning dose of the 200 mg XR but tonight the same thing happened after I took the mixed dosage of 100 mg XR and 100 mg IR.  I don't know if this is a drug reaction of some sort or if this is triggering a wave and I don't know how to tell the difference so I am looking for guidance here. The symptoms are pretty bad so I am wondering if I need to go back to the 200 mg XR to stabilize and then try again. It is suspected by my doctors that this is the drug that is causing the hyponatremia so there is a need to get off of it. Definitely need help with this one because I don't know what to do.

@Frogie for now I'm going to hold where I am at until I hear something back as I don't want to be jumping around unnecessarily so this morning I will take the 200 mg carbamazepine XR and tonight I will take 100 mg carbamazepine XR and 100 mg carbamazepine IR and will continue this for another few days to see if things improve and also while I am waiting for an answer.

[FeralCatman]

SYMPTOM NOTES

 

I looked at my records and it does seem like I started having trouble back on 06/15/2023 when I had the sinus infection / first hyponatremia episode. Since then I have had multiple nights of execessive urination / adrenaline surges / poor sleep on the nights of 6/17 6/19 06/30(night before starting the XR to IR swap) 07/04 07/07 and 07/08 (last night). Sleep became much more variable starting on 06/15. % days of anxiety and depression also went up a bit. So this seems to have started before the swap. The swap may be an irritant more than a cause??

 

I started taking symptoms notes and here are the short notes from last night.

 

1800                     Supper after getting home from ER. Slight anxiety but very minimal.

2000                    Took nightly pills

 

                             25 mg Metoprolol

                             100mg Carbamazepine XR

                             100 mg Carbamazepine IR

                             180 mg Fexofenadine HCL (Allegra)

                             Azelastine Nasal Spray

                             1000 mg fish oil

                             250 mg Magnesium Glycinate

 

2040                    Anxiety symptoms started. Cortisol levels going up.

2100                     Bed time

2100 - 0000        Slept in short bits. Cortisol levels / anxiety very high. Frequent peeing and adrenaline surges

0000                    Symptoms start to calm

0000 - 0530        Adrenaline surges and peeing about every 40 minutes but milder than early in the night

0530                    Everything calms down to mild anxiety but can't sleep

0730                    Out of bed

 

I will post every morning after I do my vitals for a few days.

 

I welcome input from anyone who may have something to offer.

 

         

[FeralCatman]

I just started to drift off for a nap and then got an adrenaline surge as I was falling asleep which jolted me awake. I had to get out of bed and I'm sitting out on my deck now. I'm not sure what is going on I am thinking it is probably best to just switch back to the full Carbamazepine XR and stabilize and then regroup and move from there. I just talked to my dad and he's going to come up in a couple of days to help me out for a bit. If anyone has any suggestions or anything to offer for support I could really use it right now. It's been a lot to deal with lately and I am exhausted and scared to death right now.

[tsranga]

16 hours ago, FeralCatman said:

Last night about 30 minutes after I took my night dose I got horrible anxiety and slept horribly and had to pee like crazy about every hour.  it is the same symptoms that I had early in my Seroquel withdrawal and anxiety came in surges every time I had to pee. 

Sorry you are going through this.  I have experienced this and it is related to autonomic dysfunction..  I found that this would happen at night, and my supine BP would be high and it would take a few hours to stabilize. Most likely your sympathetic (fight flight) is overactive. 

 

Nothing helped other than wait it out while breathing and not spiraling into the fear cycle.  It will pass 

[FeralCatman]

@tsranga Thank you for responding. I definitely needed to hear that right now. I just got off the phone with my therapist and we concluded that I was trying to juggle too many variables at the moment with the hyponatremia, going to the ER, switching the med formulation, trying to figure out how to manage the salt intake, my trauma response, etc and it all piled in on me and I'm over loaded. This of course set off my nervous system. The new med formulation may or may not play a part in this but there is no way to know right now. I have posted about this previously and termed it 'The Pig Pile Effect'. So, I just got pig piled big time. So (again) I am going to back down from switching the med formulation and re stabilize and then move forward from there. I seem to do better in the fall anyway so will revisit this in about 6 weeks. I need to let the stress dissipate and the symptoms subside. My dad is coming up so that will help. Considering everything going on it was probably just a bad time to try this. Underneath all of this is the fear of ending up in the hospital again where so much of the trauma I am dealing with happened which doesn't help.

[FeralCatman]

As my posts above have indicated I'm feeling quite crappy at the moment however I feel like now is the time to expand on something I have said previously. The people on this website are by far some of the toughest people I have ever come across. This is the part I have previously posted about. What I have also noticed is that these same people are also some of the nicest and the smartest people I have ever come across. It really does seem like it's a family in the way family is supposed to be or at least the way a group of friends is supposed to be.  It is something I have found to be very rare in this world so it is a very welcome find. It's very hard for me to open up especially to a group of strangers and though I do struggle even on this website and being anonymous, somehow it feels a little bit more okay here than anywhere else and that speaks volumes about the kinds of people that are involved in this. It makes you wonder why such a huge group of really nice really smart and pretty damn tough people all ended up getting medicated. Perhaps it's because we are the sane people trying to live in an insane world. In any case thank you all for being there. It is appreciated more than I can say. 😉✌️😺😺

[FeralCatman]

As far as why I am feeling so crappy one thing I didn't properly take into account with all of this is that hyponatremia is associated with an enormous amount of trauma that I experienced the last time I was in the hospital because, among many things, it was badly mismanaged and I almost died. So that is underlying all of this and I'm sure it's a big driver of what's going on. Like I said. Pig pile 🤯🤯🤯🤯🤯🤯

[j1290]

48 minutes ago, FeralCatman said:

Like I said. Pig pile

I hear you, FCM.   Tapering is a *lot*, and additional health concerns and life and everything, well something has to give.  I hold my taper when work or life demands.  Sounds like you have bunches of stressors right now, whatever you need to do to get stabilized sounds like a solid move.  After the first year of tapering I was unstable and had to reinstate back to square one, and it was the best thing I could have done.  I was able to regroup and find a way to taper that worked for me.   

Please keep us updated!

[FeralCatman]

@j1290 Thank you. Amazes me how trauma can just sneak up on you and tag you really hard if you're not paying attention to what is going on. I think probably in another few weeks I'll be okay to try this again but just have to get over this hump.

[Thorin]

3 hours ago, FeralCatman said:

As far as why I am feeling so crappy one thing I didn't properly take into account with all of this is that hyponatremia is associated with an enormous amount of trauma that I experienced the last time I was in the hospital because, among many things, it was badly mismanaged and I almost died. So that is underlying all of this and I'm sure it's a big driver of what's going on. Like I said. Pig pile 🤯🤯🤯🤯🤯🤯

Mate I absolutely hear you in the trauma front. I believe that sometimes the trauma can be worse than what is actually happening (not suggesting that is happening here!). As I read your posts I keep thinking if all the things you’ve been through and beaten at every step and as terrifying as this just be I can’t help but think that at some point you will look back at this moment and think ‘man that was hard. I’m glad that’s over’. I know that doesn’t make it any easier while you’re in the pig pile though. Glad your dad’s coming to give you some support mate. We’re all here for you too.

[littlebird]

3 hours ago, FeralCatman said:

It makes you wonder why such a huge group of really nice really smart and pretty damn tough people all ended up getting medicated. Perhaps it's because we are the sane people trying to live in an insane world.

That! That part. I've long been wondering if those of us who end up medicated tend to have a little more empathy than most for the pains of the world. 

 

3 hours ago, FeralCatman said:

As far as why I am feeling so crappy one thing I didn't properly take into account with all of this is that hyponatremia is associated with an enormous amount of trauma that I experienced the last time I was in the hospital because, among many things, it was badly mismanaged and I almost died.

Medical trauma is so rough, glad you're processing this stuff and hoping that was the last time you tangle with medical mismanagement.

 

1 hour ago, FeralCatman said:

Amazes me how trauma can just sneak up on you and tag you really hard if you're not paying attention to what is going on. I think probably in another few weeks I'll be okay to try this again but just have to get over this hump.

Even sometimes when I think I'm paying attention, trauma has snuck up on me real good! Like losing time to dissociation, where suddenly I'll realize I'm absolutely shocked at the time every time I've looked at a clock, hours feeling like 15 minutes, and then I remember that's been happening all week.... and that's when it dawns, "Ohhhhhh, I'm in a PTSD episode." Can't always put the pieces together until it's been happening a bit, and sometimes can't figure out it was happening till I'm starting to pull out of it! 

[FeralCatman]

UPDATE

 

I crashed last night at about 8:30. I slept for 5 hours straight and then another 2 hours then got up for a short bit then slept another 2 hours and feel like I could sleep all day so that's a good thing. The symptom notes I posted triggered a new thought train and I was finally able to ask the right question of Google to get the missing link that I needed to figure this all out and what happened.

 

https://www.healthline.com/health/can-stress-cause-low-sodium-levels

 

Now that I am using the right Search terms I'm finding a ton of information that is applicable.

 

I know that I've been chronically stressed for many years, since early childhood really, which explains the salt Cravings I've had for many years. I also know that I've had some unique physiological differences my whole life that make my normal a little different from other people's normal. Add in medications that make it harder to maintain sodium levels and that actually increases my stress level which of course would negate any possible benefit of taking a medication if there is any benefit at all which I doubt severely at this point. Adding years of trauma from the medical system and that increased my stress levels even more which makes it harder to maintain sodium levels which then creates more body stress. Add in withdrawal stress on my body and all the stress that is created while my body repairs itself and that is probably what tipped the scales in combination with switching to a healthy lower sodium diet last Fall. It's a pig pile of stress and medications and withdrawal  that make it hard to balance my body out specifically with the electrolytes and fluids which of course creates stress all combined that are creating the problem. You can see all of this happening in my blood work over the last couple of years as my body has repaired itself but you have to be able to look at a graph not just snapshots to actually see it which is where my patient Health Portal came in because it graphs out all of your blood work. You can see at different stages many values suddenly changed all at once. This is why what I learned in the military about Trend analysis is applicable and so important in this case. Modern medicine relies too much on snapshots in time that only show the picture in the moment but they don't do a whole lot of trend analysis most of the time and in my opinion they miss a huge amount by not doing that. That article explains why my blood and urine osmolality were normal but my urine sodium is high compared to what is expected for the average person. Starting this February when I had that first Bad episode is also the time when my blood sugars suddenly finished normalizing and my thyroid values changed so I went through another endocrine correction this spring. It is not just the medication but the combination of medication and stress that is making my body excrete more sodium than is normal and it's probably happening with sweat as well.  This is why this spring I was able to get outside and get stuff done and be okay but as soon as the rain and hot humid weather started I suddenly couldn't do it. This is also why I can tolerate eating massive doses of salt without any visible ill effect.

 

The answer is to de-stress as much as possible and then get off the medications. I won't be able to do it while it's so hot and humid because that added stress tips the scales but this fall when it cools down and dries out it should be better conditions to do it.  Otherwise I won't even be able to leave my house and go outside. I'm also going to get trash pickup and have people come and mow for at least a while to take that stress off of me. It's going to take a while but now that I know the whole picture I know that I can get there and keep myself safe while I do it.

 

Thank you all again for being there it's very helpful and very much appreciated. 😉✌️😺😺

 

[FeralCatman]

Here's a good article for everyone that explains pretty clearly why withdrawal is tough not only on the mind but on the body. Withdrawal is a massive body stressor that affects every body system so in addition to structural changes taking place and chemical changes taking place the stress of the process itself creates dysfunction in different body systems.

 

https://www.apa.org/topics/stress/body

[FeralCatman]

Here are two more articles on the effects of salt as related to stress.

 

https://www.sciencedaily.com/releases/2011/04/110405175012.htm

 

https://www.sciencedirect.com/science/article/pii/S2666602222000167

 

 

 

 

[Thorin]

28 minutes ago, FeralCatman said:

UPDATE

 

I crashed last night at about 8:30. I slept for 5 hours straight and then another 2 hours then got up for a short bit then slept another 2 hours and feel like I could sleep all day so that's a good thing. The symptom notes I posted triggered a new thought train and I was finally able to ask the right question of Google to get the missing link that I needed to figure this all out and what happened.

 

https://www.healthline.com/health/can-stress-cause-low-sodium-levels

 

Now that I am using the right Search terms I'm finding a ton of information that is applicable.

 

I know that I've been chronically stressed for many years, since early childhood really, which explains the salt Cravings I've had for many years. I also know that I've had some unique physiological differences my whole life that make my normal a little different from other people's normal. Add in medications that make it harder to maintain sodium levels and that actually increases my stress level which of course would negate any possible benefit of taking a medication if there is any benefit at all which I doubt severely at this point. Adding years of trauma from the medical system and that increased my stress levels even more which makes it harder to maintain sodium levels which then creates more body stress. Add in withdrawal stress on my body and all the stress that is created while my body repairs itself and that is probably what tipped the scales in combination with switching to a healthy lower sodium diet last Fall. It's a pig pile of stress and medications and withdrawal  that make it hard to balance my body out specifically with the electrolytes and fluids which of course creates stress all combined that are creating the problem. You can see all of this happening in my blood work over the last couple of years as my body has repaired itself but you have to be able to look at a graph not just snapshots to actually see it which is where my patient Health Portal came in because it graphs out all of your blood work. You can see at different stages many values suddenly changed all at once. This is why what I learned in the military about Trend analysis is applicable and so important in this case. Modern medicine relies too much on snapshots in time that only show the picture in the moment but they don't do a whole lot of trend analysis most of the time and in my opinion they miss a huge amount by not doing that. That article explains why my blood and urine osmolality were normal but my urine sodium is high compared to what is expected for the average person. Starting this February when I had that first Bad episode is also the time when my blood sugars suddenly finished normalizing and my thyroid values changed so I went through another endocrine correction this spring. It is not just the medication but the combination of medication and stress that is making my body excrete more sodium than is normal and it's probably happening with sweat as well.  This is why this spring I was able to get outside and get stuff done and be okay but as soon as the rain and hot humid weather started I suddenly couldn't do it. This is also why I can tolerate eating massive doses of salt without any visible ill effect.

 

The answer is to de-stress as much as possible and then get off the medications. I won't be able to do it while it's so hot and humid because that added stress tips the scales but this fall when it cools down and dries out it should be better conditions to do it.  Otherwise I won't even be able to leave my house and go outside. I'm also going to get trash pickup and have people come and mow for at least a while to take that stress off of me. It's going to take a while but now that I know the whole picture I know that I can get there and keep myself safe while I do it.

 

Thank you all again for being there it's very helpful and very much appreciated. 😉✌️😺😺

 

This is good news mate. Good you’ve been able to step back and see the forest instead of staring at individual trees. Also sounds like you’ve got a plan which takes some of the fear out. I hope I get to where you are one day!!!! 

[FeralCatman]

There are several lessons to learn from the last few days.

 

1) This breakdown and associated symptoms are actually a sign of healing induced stress which is of course a sign of healing.

 

2) If your body is telling you it wants to eat more salt it may very well not be psychological but a physical requirement because your body is trying to overcome a stressor. 

 

3) Measuring my fluid in versus fluid out daily in addition to the Salt is going to be key moving forward to make sure I maintain the proper fluid electrolyte balance. It's not as simple as just adding more salt or restricting fluids it's Gathering the data needed to strike the balance that my body needs which of course is going to be individual not something that can be done with just general advice.

 

Despite the sometimes severe and scary pain healing is happening. 😉✌️😺😺

[Catina7]

1 hour ago, FeralCatman said:

now that I know the whole picture I know that I can get there and keep myself safe while I do it.

 

Congratulations on figuring all this out FCM!  I wish you continued healing.  Hug your precious fur babies for me!  

[tsranga]

2 hours ago, FeralCatman said:

 

I crashed last night at about 8:30. I slept for 5 hours straight and then another 2 hours then got up for a short bit then slept another 2 hours and feel like I could sleep all day so that's a good thing.

 

Good.  I am familiar with this alternating pattern of no/poor sleep/wired and excess sleep/rest/fatigue. 

 

This is your autonomic nervous system trying to get to homeostasis from sympathetic to parasympathetic and vice versa. Imagine a pendulum - When you are in a wave/flare it takes longer with wider swings each way, but when you are better, the swings are more controlled, short, and quick.  Another analogy is pressing the brake and accelerator simultaneously. 

 

I have experimented enough with salt and hydration to understand that while they can affect you, their impact is much smaller and doesn't cause as much of a flare as physical stress (heat and humidity are big stressors).

 

Every time I engage in sustained physical activity, my resting HR goes to by 2-3 points, and it takes 2-3 days to return to my normal resting HR. My HRV also drops the day after exercise.  Instead if I take frequent breaks between exercise and rest, and limit the exercise by duration and intensity, the HR is more consistent and stable. This also translates to more consistent blood flow than when I stay in one position (activity/rest) too long.

 

Just another data point to consider.

[FeralCatman]

43 minutes ago, tsranga said:

 

Good.  I am familiar with this alternating pattern of no/poor sleep/wired and excess sleep/rest/fatigue. 

 

This is your autonomic nervous system trying to get to homeostasis from sympathetic to parasympathetic and vice versa. Imagine a pendulum - When you are in a wave/flare it takes longer with wider swings each way, but when you are better, the swings are more controlled, short, and quick.  Another analogy is pressing the brake and accelerator simultaneously. 

 

I have experimented enough with salt and hydration to understand that while they can affect you, their impact is much smaller and doesn't cause as much of a flare as physical stress (heat and humidity are big stressors).

 

Every time I engage in sustained physical activity, my resting HR goes to by 2-3 points, and it takes 2-3 days to return to my normal resting HR. My HRV also drops the day after exercise.  Instead if I take frequent breaks between exercise and rest, and limit the exercise by duration and intensity, the HR is more consistent and stable. This also translates to more consistent blood flow than when I stay in one position (activity/rest) too long.

 

Just another data point to consider.

@tsranga In my case the sodium is definitely a factor since it's also verified by the blood work. I've had repeated low numbers since the beginning of the year which is also when the nocturia flared up really bad again in addition to a lower sodium diet. My urine sodium concentration was 65 but the average for most people is usually no more than 20 so due to the stress my kidneys are excreting more sodium and with the increased urination I am just losing too much. In combination with the nocturia and the medications it's definitely throwing things way off balance. That said it's a pretty easy fix. All I need to do is measure out each day how much fluid I lose through urination then factor in sweat and I can balance the equation along with the extra salt and it should help me to feel quite a lot better and take that part of the stress equation away.  I figure four weeks of record keeping will allow me to establish a maximum/minimum and then I can graph it out in between and figure out what the average day really looks like and how to balance everything out. It doesn't solve the rest of the problems but it will help the body by keeping things more balanced. The exercise part that you mentioned is why I just hired someone to do all my mowing for a while so that I'm not getting hit with constant High stressors because that takes quite a lot out of me at the moment. I have the money so why not use it to help myself feel better. I am also going to rent a small dumpster to have on my property for household trash that will just get it picked up once a month so I don't have to stress about getting to the transfer station on the 3 days a week when it's open when I don't feel right. This way all of the stress is off of me and everything gets taken care of and I don't have to feel stressed sitting looking at what needs to be done and worrying about what it's going to do to me if I go do it. Doing all this will help me do more consistent gentle exercise on a daily basis instead of doing bursts of intense activity followed by many days of recovery which is what I'm doing right now and it is definitely not helping me.

[FeralCatman]

Just now, FeralCatman said:

@tsranga In my case the sodium is definitely a factor since it's also verified by the blood work. I've had repeated low numbers since the beginning of the year which is also when the nocturia flared up really bad again in addition to a lower sodium diet. My urine sodium concentration was 65 but the average for most people is usually no more than 20 so due to the stress my kidneys are excreting more sodium and with the increased urination I am just losing too much. In combination with the nocturia and the medications it's definitely throwing things way off balance. That said it's a pretty easy fix. All I need to do is measure out each day how much fluid I lose through urination then factor in sweat and I can balance the equation along with the extra salt and it should help me to feel quite a lot better and take that part of the stress equation away.  I figure four weeks of record keeping will allow me to establish a maximum/minimum and then I can graph it out in between and figure out what the average day really looks like and how to balance everything out. It doesn't solve the rest of the problems but it will help the body by keeping things more balanced. The exercise part that you mentioned is why I just hired someone to do all my mowing for a while so that I'm not getting hit with constant High stressors because that takes quite a lot out of me at the moment. I have the money so why not use it to help myself feel better. I am also going to rent a small dumpster to have on my property for household trash that will just get it picked up once a month so I don't have to stress about getting to the transfer station on the 3 days a week when it's open when I don't feel right. This way all of the stress is off of me and everything gets taken care of and I don't have to feel stressed sitting looking at what needs to be done and worrying about what it's going to do to me if I go do it. Doing all this will help me do more consistent gentle exercise on a daily basis instead of doing bursts of intense activity followed by many days of recovery which is what I'm doing right now and it is definitely not helping me.

@tsranga I also agree with the heat and humidity especially the humidity. Last summer it was pretty dry and I did better but this year it's been raining nearly every day so the day is when I do have to go out and do stuff it is a hot day that is more like a steam bath and my body can't handle that right now and I think that's part of why I'm having such a hard time this season.

[Frogie]

@FeralCatman

 

I wish I knew more about the carbamazepine XR and IR, other than It is an anti seizure medication and the IR is immediate release.

 

I did find this by googling:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6463840/

 

Just go very slowly, that would be my best advise to give you.

[FeralCatman]

47 minutes ago, Frogie said:

@FeralCatman

 

I wish I knew more about the carbamazepine XR and IR, other than It is an anti seizure medication and the IR is immediate release.

 

I did find this by googling:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6463840/

 

Just go very slowly, that would be my best advise to give you.

@Frogie Thank you for getting back to me and I will definitely read that link. Carbamazepine was prescribed as a mood stabilizer and is the same class of drug as Lamictal and Depakote and other similar drugs it just has the worst side effect profile. Lucky me. 🙄 The difference in absorption between immediate release and extended release is 15% with the XR providing up to a 25% decrease in peak plasma concentration. That of course is highly variable from person to person. The trick for me will be doing the swap over from the XR to the IR and once I am able to get that done the rest of it is just a slow steady decrease and I will most definitely take your advice about going very slowly. I have a few stressors to nail down in my life and am waiting for cooler dryer weather that is not as hard on the body before I try this again and I think the crossover will actually go okay because it seems like the problem wasn't actually the drug it was stress, trauma/PTSD, my overstressed body, and bad timing. Thank you again for everything you do. The moderators on this website are saving lives everyday. 😉✌️😺😺

[FeralCatman]

@Frogie I also think I figured out how to make the crossover easier on my body. When I start the crossover I won't take the immediate release dose with the extended release dose. I am thinking I may break up the immediate release dose and take half of it before and half of it after the extended release dose to keep the peak plasma concentrations down while my body adjusts. Once I switch to the full immediate release I may start taking it broken up into four times a day instead of two times a day.  That way it will behave more like the extended release like my body is used to. Early in tapering the Seroquel I ended up doing this for about 4 months to even out the plasma concentration. As I reduced the dose I simply eliminated a dose during the day until I got back down to one dose a day at night . I am still thinking about whether that would work or not and we'll discuss it with my PNP at our next appointment and if you or any of the other moderators have any input on that feel free to chime in.