savinggrace

[DataGuy]

Will try to reply tomorrow @savinggrace. Wicked day for me today. But I think holding is the best option. Can take quite awhile to stabilize. Hope you had a more tolerable day today. 

[savinggrace]

No worries, Data Guy. Please take care of yourself!

 

Grace

[DataGuy]

Thanks @savinggrace. I think I slept a bit better last night. I know you have gone over what you eat, but what is the typical composition of your diet in terms of macronutrients? Like is it 10-20-70% protein-fat-carbs? What combinations of macronutrients like that have you tried, and what were the results? I know you tried the GAPS diet which is mostly fat and protein....

 

You said you cut out some fat. Does that typically help you eat more calories? How often do you eat? What is the length of time between your last meal of the day and your first meal the next day? 

 

I remember being in your situation and trying to keep my weight up, taking digestive enzymes, antacids etc but not really sure if they were having an impact. It is very frustrating. 

 

One thing I will say is that @arborran into a lot of problems having an iron deficiency and had a pretty big setback because of it. So vitamin and mineral deficiencies can definitely cause problems like that. You would have to ask arbor if normalization of her iron levels resulted in some stabilization. 

 

Can you jog my memory as to when you began losing weight? Was it after you started trying to taper? Would you say tapering has made it worse? 

[savinggrace]

Hi Data Guy,

 

Honestly, I feel too sick to figure out my macro-nutrient percentages, but sadly, I think I lean heavily in the fat direction, as I try to control carbs (blood sugar problems) and cannot digest protein well because of gastroparesis.  I am guessing it looks something like 20/40/40...on a very very rough calculation.  My fat comes in the form of ground flax, olive oil, and sunflower butter...I eat a homemade flax/oat bread that has just a little egg and a lot of flax in it and also olive oil and I put a very small amount of sunflower butter on it.  It is calorie dense, I eat it twice a day,  and it helps my motility so it has become a staple in my diet, but if I have pancreatic insufficiency (and I am relatively certain I do) then fat is not my friend.  I cannot digest enough vegetables to keep my weight up and I have to control carb intake very tightly to control borderline diabeters/insulin resistance.  Legumes or beans for protein are out of the question so I make myself eat 5-6 oz. organic chicken/day.   So this is how I landed on a high fat diet... I am tweaking it, but honestly I can't cut out too much more fat or my weight will plummet.  I tried to eat some fruits that are FODMAP friendly in very small servings over the past few days and now my blood sugar is bouncing up and down!

 

As far as fasting goes, I can only go 12-13 hours without eating; I get very very weak and my blood sugar drops too low.  Sometimes I have to eat in the middle of the night because I can feel the drop but I try not to.  I think at 86# intermittent fasting any more aggressively is a bad idea.  I just can't get enough calories in during a shorter eating window.  I do embrace and understand the concept completely though.

 

For now I am proceeding one day/one hour/one meal at a time.  My GI doc has basically shut me down completely.  He told me I would have to go to a tertiary care center for further treatment. Apparently, pancreas problems are not his bailiwick.  He said an endoscopy/colonoscopy would maybe shed some light on my absorption issues, but I am not understanding how/why.  So, for now, those procedures are off the table.  I  have a palliative care doctor who is standing behind me on this and agrees that procedures are likely to make me worse at this point (with no clear objective for the symptoms at hand) I don't think I need the cancer screening.  I can do a Cologuard test for that and the prep for an unnecessary colonoscopy will take me weeks/ months to recover from (much less the anasthesia)

 

I don't know if I answered your questions.  I am feeling quite poorly so this is the best I can do.  I am still getting up and walking in the sun each morning and do a bit of gardening each day before I crash in the early afternoon, and then my day is done.  Unfortunately, sleep doesn't come until midnight so the days are long.

 

I truly hope you are feeling recovered from your trip and getting back to whatever your withdrawal normal is...or perhaps you don't consider yourself in withdrawal any more?  From your comments, I suspect you do.

 

Take care and thank you for your generosity of time and thought.

Grace

[Ariel]

@savinggrace

My heart goes out to you, Grace. 

You have been through so much and you are so very brave. 

Thinking of you and holding space for your experience <3

In solidarity and support,

A.

[DataGuy]

Hi @savinggrace,

 

Yes, I definitely consider myself still in withdrawal. My work capacity is not great, and neither is my capacity for stress. Organizational skill are not so stellar either. Sleep + stomach bad. 

 

On 7/16/2022 at 4:13 PM, savinggrace said:

I think at 86# intermittent fasting any more aggressively is a bad idea.

👍👍 I agree. No need to stress in order to do something with no conclusively proven benefit. But you said you do feel better when you are able to get through 12-14 hours without eating? I do too. When I fast for 16 hours per day consistently I feel much better. I'm not sure why exactly. It could be something that doesn't have so much to do with fasting. Even 4 years off I still have pretty major stomach issues. Paradoxically it seems like when I eat fewer meals (say 1 or 2 per day) combined with the long fast, I gain weight more easily. When I am eating small meals all the time I actually tend to lose a bit of weight. Another thing I don't understand. I have heard nutrition experts (like Tim Spector) say that eating many small meals and constantly snacking is actually bad for us. But I think it is important to keep in mind that much of the advice on nutrition is pretty nonsensical and based in poor quality research, so it is probably best to just stick with what works well for you, experimenting where you feel it might help. 

 

20% protein / 40% fat / 40% carbs is not a bad mix. I think previous advice for pancreatic insufficiency did mention avoiding fat, but that may be changing. You need fat to absorb certain nutrients. 

 

If you are eating 5-6 oz of chicken, that is around 50g of protein. I would guess adding in the other components you are getting something like 60-70g of protein per day? That is actually quite good and more than enough for someone your size. If protein indeed accounts for 20% of calories, that would mean you are eating something like 1300 kcal per day. Does that sound like it's in the right ballpark?

 

I am not sure what to do about the weight loss, but your GI doc sounds like he is not really worth consulting with again. It sort of reminds me of talking to the psychiatrist I was seeing who didn't acknowledge or seem to know anything about wd. I wanted to say "can you please refer me to a colleague who is more competent than you??"

 

I am sorry you have such constant stomach pain. Is there anything that makes it better, other than intermittent fasting? I tend to get back bloating/gastritis from eating carbohydrates. Some foods I have a really hard time with which I never did prior to wd: melons, blueberries, grapes. All fruit I used to eat with no problem. When I eat meat/fat/protein it really seems to calm down the gastritis (and also my nervous system). Do you find any food has a relaxing effect on you (or a stimulating effect)? I am not trying to prescribe anything, only hoping my experience might give you some ideas and help a bit. Unfortunately most doctors seem totally unfamiliar with these types of problems and have no idea to even begin to treat it, although this osteopath associated with the Benzodiazepine Information Coalition has written a bit about histamine intolerances associated with wd.

 

I am glad you have at least a couple doctors behind you and supporting you. This is what doctors are paid to do, after all : ). I hope by pausing the taper, your body can have a chance to sort things out and maybe the weight loss will stop and reverse. Tapering while in such a sensitive state can definitely result in weight loss that lasts for months (it did for me) even with no further change in medication. I am really hoping a long pause has at least some benefit 🤞

 

Please take care of yourself, Grace, and don't feel the need to answer until you feel a bit better. 

[savinggrace]

Data Guy,

 

Wow...you're good.  Yes, I eat on average 1300 calories (on a good day) although admittedly, I force myself to eat, even with pain.

 

I think I get plenty of protein.  In fact since my pancreas seems to be an issue (fat absorption) I am cutting back on the protein a bit.  I get more than half my weight in grams of protein.

 

I hear you about fasting...or, in other words, at least not "grazing" through the day.  For people like me, it is often recommended to eat smaller meals more often but gives me a lot of pain.  I have to finesse the intermittent fasting thing to work for me; old habits die hard but the research on fasting is overwhelmingly positive.  Old habits die hard, but unless I continue to lose weight, I think fasting (maybe shorter fasts, but at least 12-13 hours) is the least invasive thing I can do to help myself.

 

I am humbled by your attempts to help me.  For now, I am done with my GI guys.  Just don't want to end up in the hospital with acute pancreatitis, but I don't know how a colonoscopy/endoscopy is going to predict that!

 

Take care of yourself!

Grace

[Ariel]

Hi @savinggrace

I'm thinking of you and feeling awed by your courage. 

Wishing you well, sending hugs and healing vibes <3

[savinggrace]

Same for you, Ariel. 💕 Thanks for the steady stream of encouragement. 
 

Grace

[Ariel]

@savinggrace

Hello dear Grace,

How are you going? 

I am trudging along... 

Recently had what felt like a few tiny victories, gut-wise, with cautious food re-introduction experiments. I thought of you. 

Funny how one can feel triumphant at having managed a few Brussels sprouts without incurring intestinal punishment. 

Something like that can make me feel high on success! (Doing my best to keep the hubris in check.)

Digestion and sleep are my bold, if not final, frontiers. 

Thinking of you, sending hugs and healing vibes <3

A.

[savinggrace]

Oh, Ariel. Thanks for thinking of me. 
 

i so understand the small victories…sleeping a 3-4 hour stretch (heavenly) and/or eating something nutritious and not feeling worse. It’s hard for me, sometimes, when the next time doesn’t go so well, but I keep trying to go forward. I have found, with food, that progress is not at all linear. I cannot connect the dots on why I can tolerate something one day, and not the next time. I try to be careful not to eat that new food again for a few more days to help figure out what is causing what. Mostly though, I am rotating through a limited number of foods regularly and trying something new when my gut is a bit happier. (If that makes sense)

 

As far as sleep goes, I have struggled my whole life to establish a circadian rhythm (pre-psych meds as well) and there seems to be no rhyme or reason for good/bad nights mostly. My brain is so stubborn and it is in charge, no matter how hard I try to out-wit it!

 

Hope today is one of the better ones for you. 
 

Grace 💕

[DataGuy]

How are you doing @savinggrace? Hope you are enjoying the transition from summer to fall : )

[savinggrace]

Hi Data Guy,

 

So nice of you to check in on me. 
 

At the 11th hour, I decided to have the colonoscopy/endoscopy. I had started having trouble swallowing and it was scaring me. It happened at least ten times in two weeks. I now realize it could have been anxiety, but I have Barrett’s esophagus that hadn’t been checked in 3 years, and my GI insisted that the only way to explore it was the endoscopy so I relented at the last minute…literally. 
 

I think I came through it okay. They used proportions, though, and I suspect my brain is still adjusting to that brief exposure. I slept a lot in the first few days after the procedure (I suspect my GABA receptors liked that stuff!) but now I am barely sleeping. I sleep about an hour at a time. I feel like this is my brain trying to reestablish homeostasis (as unstable as that already was). My worry is that I will not recover from this temporary “uprose” of sorts. I am trying to tell myself that I will get back to pre-procedure normal soon. 

Of course, they found nothing with the pathology. The Barrett’s is not progressing. I will not be having either of these procedures again. 

The very good news, though, is that my gut was not negatively affected at all though it has been just two weeks. In fact I have less pain and much better motility from the “clean out” maybe?  I have put on 5 pounds in two weeks. Perhaps I am absorbing more nutrients?  I don’t know. I am eating a bit more variety but not many more calories so it doesn’t really make sense. I was concerned that my vagus nerve would be affected by the propofol and slow things down even more, but that didn’t happen…at least not yet. 
 

I hesitate to say I came out unscathed because of my lack of sleep but my gut pain is somewhat improved. The prep was horrendously bad and I have had colonoscopies before. Maybe my nervous system is also still reacting to the nasty chemicals I had to drink for the prep. 
 

So, despite the excellent thoughts you provoked prior to having the procedure, I nearly cancelled and then changed my mind. I think if I had refused my doctors just may choose to shut down on me. All of them thought it was high time to be checked out. (Colon cancer in family and Barrett’s)

I can only refuse so much treatment before they all shut down. I have excudoctors right now, who actually listen and seem to care and do not push drugs on me. My gut (literally) told me I needed to cooperate this time in order to have anyone to turn to in time of real need.  
 

I do not regret the questions you raised. I had good dialogue with all my docs about it (except for my GI who entertained no other option). In the end, I am glad I got it over with. I don’t know if 2 weeks is enough time to assess whether any long-lasting harm has occurred. However, I am 68 and plan to NEVER have these procedures again! 
 

I hope your better days are surpassing the difficult ones. Thanks again for checking in. 
 

Grace
 

 

 

 

[DataGuy]

@savinggrace wow that is great news! I hope the "gut gains" continue and the sleep gets better 🙂. At least it must be easier to deal with the lack of sleep knowing you have gained a bit of weight. That was always my big worry when I wasn't sleeping, that it would make the weight loss worse. 

 

I believe trouble swallowing can be an adverse effect of psych meds. I know it seems like they can cause every problem under the sun, and it is definitely important to get other possible causes checked out.  I saw someone post a review about it but can't seem to find it right now. Will try to dig it up. Here is another study I found: https://www.nature.com/articles/s41598-021-99858-w#:~:text=It has been speculated that,the brainstem regulation of swallowing.

"A relevant OD (oropharyngeal dysphagia) association was found, even after adjusting for CNS diseases, with antipsychotics, benzodiazepines, anti-Parkinson drugs, antidepressants, and antiepileptics. Further risk of OD was found with beta-blockers, alpha-blockers, opioids, antiemetics, antivertiginosa or antihistamines, metoclopramide, domperidone, anticholinergics, loop diuretics, urologics, and ophthalmics."

 

But hard to know what brought on the difficult swallowing in your case. Always difficult to attribute to the drugs when a problem suddenly appears and you have been taking them (and trying to get off) for so long. But I do think adverse events can arise spontaneously even after long term use and little change of dose, which is why research like this is necessary. 

Edited September 29, 2022 by DataGuy

[savinggrace]

Hi Data Guy,

I just reread what I wrote yesterday. I assume you figured out I meant propofol was used for anesthesia. 

 My weight remains higher and my gut pain less. However I am getting increasingly anxious that the stimulation of my brain with propofol has induced some extreme withdrawal. I am not sleeping more than an hour at a time and dealing with shocks all night. This has gone on for seven nights in a row and the procedure was two weeks ago. I have read here, more than a few times, that a single dose of something has set people back for months, if not more. I am frightened. I have so much body pain, and I sleep so poorly already. This is terribly upsetting and one of the reasons I avoid just about every medical intervention offered. I have had propofol a few times before without this effect. I just don’t know how I can tolerate my lack of any restful sleep night after night. I used to get 3-4 hours in a row (on a good night). It has been a lot of nights now not even making it to one hour. It aggravates all my other symptoms. I was about to start tapering a little bit of trileptal again but now I feel even more unstable. 
 

I agree about the trouble swallowing. I think my brain definitely plays games with me as it started just a few weeks prior to the colonoscopy. It made me unsure about skipping it. I haven’t had it since the procedure. I also definitely have a “lump in my throat” feeling when over-anxious or upset. This swallowing thing seemed to be an exaggeration of the lump in the throat feeling, in hindsight. 

 

I kind of need some hope that this, too, shall pass…got any?  I would be happy to hear from anyone on this situation. 
 

Thanks for your thoughts and time. 
 

Grace
 

 

 

 

 

[DataGuy]

Hi @savinggrace,

 

Ugh, sorry you feel so bad. Yes, lack of sleep tends to make everything seem worse. Any sort of pain or unpleasant feelings take on an exaggerated character. I think the important thing is to not panic and avoid doing anything drastic to try and correct the situation. Just let your body deal with the after effects in the best way it knows how, and it will eventually return things to normal as best it can. It is definitely going to be uncomfortable, but pain from the body is a evolutionary adaptation that is meant to teach the organism to protect itself and avoid similar harm in the future. Important not to suppress it. 

 

I think I would avoid tapering for awhile until you return to your baseline (or hopefully, better than your baseline 😉). I do think holding would best get you there, but always hard to be certain. The most important thing is to listen to your body. If tapering makes things worse for you, you should avoid it until you are feeling better and more confident. There is little advantage in toughing things out by tapering when you are suffering from nervous system sensitivity. I made that mistake in my taper and am still regretting it to this day (more than 4 years later). 

 

Hope you are feeling better soon 🙏

 

DG

[Erell]

Hello @savinggrace, 
Like @DataGuy, I can't say what your difficulty in swallowing is due to, but in case it might give you some comfort I wanted to inform you that I know this symptom well since my prozac bridge: I haven't seen many testimonies about this symptom, but you are not alone.

It can be quite scary, and, like you said, it is difficult to determine what is due to anxiety and what is due to a problem with the mobility of our organs. Or both : I can't find this study, but I remember reading articles that suggested that anxiety could "trick" our brains into thinking we don't know how to swallow, and that changes could be induced in our reflexes. And sometimes the adrenaline is so strong that all our muscles seem to be frozen anyway.
In short, you are not alone and, above all, this symptom can improve: it has come back in force on my side these last few days because I am in a big wave, but I had almost forgotten about it these last few months since it had gradually disappeared and I didn't even think about it anymore. So, as for the rest, it seems that this symptom can evolve in a non-linear way, and improve or even disappear… in a waves and windows pattern  

I don't know if this will help you: when my swallowing difficulties are too intense, I forget the notion of "meal" and eat throughout the day, so that I don't starve myself and don't feel anxious about not being able to eat at mealtime.

Sending my support ❤️ 

[savinggrace]

Errol,

 

I am grateful for your thoughts and ideas and for the time you took to write to me. I actually had the thought that the swallowing problem was actually caused by anticipation of the procedure, and made me think twice about cancelling it. I have since been much more aware of getting that “lump in my throat” feeling when I am upset.  It comes on immediately but not always. I am pretty anxious all the time. My brain plays games with me to doubt myself, I think. 
 

Again, thanks for your feedback. 
Grace
 

 

[savinggrace]

I agree Data Guy. Tapering, even a 5% taper of trileptal right now, is out of the question. I am trying so hard to stabilize but my brain/body have other ideas. Just a bit scared. This shocky, extremely fragmented sleep seems to be sticking around and not abating. The body pain is so much worse when I get no restful sleep. I guess second-guessing my truly agonizing decision to have the procedure may have been the wrong choice, though oddly, I am holding onto the 5.5 # weight gain. 
 

You take care and many thanks!

Grace

[savinggrace]

Hello @Malbec37,

 

My genetics tests explained a lot.  I have had several over the years, but most recently I had one that specifically targeted genes needed to metabolize pharmaceuticals.  The test gives you your genotype for various enzymes commonly needed to metabolize common drugs.  (We have thousands of enzymes and genes; the science/research is just on the cutting edge of this information being accessed BEFORE drugs are prescribed)  I sure wish my genetics had been known throughout my life.  One of the enzymes I am a "slow" metabolizer of drugs that need it (one can be poor or slow, intermediate, normal, rapid, and ultra-rapid) metabolizes 50-80%, more or less, of all drugs, which explains why I get so sick from very small doses of many many drugs.  Actually this is a very complex subject, and one that is likely to cause too many worries for too many people, but if you have a specific question I am glad to share what I understand in a PM.  I have learned it all by studying and it has taken years for me to understand but my results are not surprising at all and explain why poly-pharmacy was absolutely out of the question for me...and yet I remain stuck in the quagmire trying to sort out how to get out.  BTW, most doctors are clueless about this stuff; even pharmacists are not heeding the information if one is fortunate enough to know their genetics and ask the right questions.

 

Genetics testing is tricky because just because one has a mutation, it does not mean it will express itself.  I have found out all my genetics results AFTER the fact, and they are, and have been, expressing themselves all along.  I knew I was different but my doctors have never acknowledged that people metabolize drugs differently.  They always deny my side effects.

 

Grace

 

[DataGuy]

On 9/30/2022 at 10:46 AM, savinggrace said:

I agree Data Guy. Tapering, even a 5% taper of trileptal right now, is out of the question. I am trying so hard to stabilize but my brain/body have other ideas. Just a bit scared. This shocky, extremely fragmented sleep seems to be sticking around and not abating. The body pain is so much worse when I get no restful sleep. I guess second-guessing my truly agonizing decision to have the procedure may have been the wrong choice, though oddly, I am holding onto the 5.5 # weight gain. 
 

You take care and many thanks!

Grace

 

Always great to hear updates from you, @savinggrace. Sorry to hear about the sleep and body pain. I hope it has improved a bit that you have held on to the weight gain.

 

I am working about 60% of a work week now and it is pretty exhausting, especially when I don't sleep well (which is most of the time), so I've been trying to limit my time online. Are you doing any better in recovering from the procedure?

 

Always tough to know what the right choice is when you are in uncharted territory, so don't stress about it too much. Wishing you the best 🙏

 

DG

[savinggrace]

Hi Data Guy,

 

Please keep pacing yourself.  Your 60% is likely as far as you should even attempt to go.  When I have a better day, and exceed my set point of productivity, I inevitably pay for it.  It is a difficult thing to stick to, though, because I often feel that I should be productive when I feel I can be.

 

It's always nice to hear from you though.  I am happy to report that I have held onto the 5.5# that I gained post-colonoscopy.  I wonder if the massive "clean out" for the prep helped my absorption.  My gut motility seems to have improved as well...don't get me wrong...I am not eating everything now.  I developed too many sensitivities to foods now.  I am, however, eating a bit more, and a slightly bigger variety of food.  So, though traumatizing, the procedure seems to be behind me now.  The sleep setback (and shocks) I had was or wasn't related to the propofol.  Who knows?  I remain clueless most of the time as to connecting the dots.

 

My pain level is very high all of the time now.  My inability to take anything, even tylenol, obviously aggravates my situation enormously.  I can't help but wonder how much worse it can get?  My malnutrition is at the bottom of all this, but I become unglued if I take the supplements, or even some of the foods I need (like dairy) so I don't expect any of this to get better.

 

I literally live one day, sometimes one hour/minute at a time.

 

Wishing you healing and expressing much gratitude for your time and effort to support me.  Please take care of yourself and put your healing first.

 

Grace

[savinggrace]

Okay, so as 2023 arrives I find myself at a place of complete and utter despair. (meaning my lowest point ever)  For the first time since I started tapering (about 15 years ago when I realized my drugs were my problem) I considered up-dosing my benzo last night.  I didn't but it is the first time I considered it.

 

My goal is, and has been, to try and stabilize and taper when I could.  That has come to a standstill.  These drugs have destroyed my physical health.  I am in excruciating pain day and night.  I have severe osteoporosis and arthritis of all my bones and spine.  I am 5'2" and weigh 85 pounds. I can see all my bones.  I am sensitive to the tiniest change in anything...food, environment, social interactions, etc.  I have many chronic conditions that I am not treating...anorexia (as defined by an inability to eat at times, not a desire to be thin), chronic pancreatitis, chronic sinusitis, SIBO, IBS, gastroparesis, Barrett's esophagus,  vitamin deficiencies including the calcium and Vitamin D I need for my bones  low vitamin C and B vitamins.  I am sleeping 1-2 hours at a time at most, which adds up to 4-5 fragmented hours of sleep on a better night. Now I am having severe symptoms of sleep apnea.  This is unbearable. (sleep study pending but guessing that the diagnosis will be valium-induced apnea)

 

Over the past 20 years I have barely lived, hoping to get to a better place, but it never happened. I have toughed out excruciating pain more times than I can count.  I haven't taken even a tylenol since 2014.  In 2021 I got a double ear infection that I had to treat.  The amoxicillin got rid of the ear infection but gave me 6-8 months of POTS syndrome symptoms.  (I now realize that is what has always happened with antibiotics but now I tolerate no antibiotic w/o immediate breathing, blood pressure and heart problems)  A serious illness needing serious drugs may likely kill me.

 

I took a big chance and got a new psychiatrist about 6-8 months ago.  She recognized how sick I am immediately.  She actually is a gem.  Sure, she wants me off the drugs, too, but she recognizes just how much I have tolerated in my effort to unsuccessfully taper any more than I have.  She sees me EVERY week for 30 minutes. (this is not what she usually does, but she doesn't let one week go by without connecting with me)  Her goal from the start was to stabilize me.  She kept saying I need time. I agree. She listens, and sees what I am going through and keeps saying "we need to stabilize your nervous system" before we go forward.

 

I am seeing a new therapist every week now ( but have always seen one) to try and process all the trauma that my psych identified (not that I wasn't aware).  So far, I just seem to be getting worse.  I went to an extremely gently and sensitive person for something akin to cranio-sacral massage (best I can describe what he does).  It de-stabilized my joints/spine despite barely feeling the treatments.  I tried 6 months of accupuncture.  I had not response.  I walk every single day for nearly an hour, despite the pain and fatigue because it hurts to lie in bed or on the couch all day. I cry sometimes I am in so much pain.  I have no muscle.  My spine is too fragile for strengthening exercises.  All I use is ice/heat for excruciating pain.

 

I have no relationships left.  My husband of 47 years has been by my side this whole time.  He is losing his patience, not to mention his lack of quality of life.  If he leaves me, I will not be able to survive on my own.

 

This is only the tip of the iceberg.   I would like to make it clear that since joining SA, I can honestly say I never updosed or changed any drugs. I have stuck to all the basic tenets taught here (and tried to help others when I could though my energy and ability to do so has waned.) I tried to accept the tiniest cuts possible as progress.  I did have to get some B12 shots as I was in danger of a heart attack/stroke my levels were so low.  I now think I have to stop those.  (I got my levels up in range but I suspect they are "competing" with my drugs by de-toxing them too rapidly)  I have had all the COVID vaccines and can't help but wonder if they contributed to what seems to be an accelerating downward spiral of my nervous system de-stabilization.

 

Something has to change.  I am not stabilzing.  I am so ill.  I doubt that I will even live long enough to taper much at all and let my nervous system recover.
 

. I spent New Year's eve researching rehab and detox facilities.  I know this is insane and irrational.  I know what will happen to me there.  I have spent 20 years in control of my own taper.  I am 68.  After tossing and turning all last night, I wondered if it is time to give my system a break and updose my valium.  This thought has never even been up for consideration for 20 years, though it has been offered to me many times.  My current psych is not advocating any other drug or change right now...just stabilization...but since I was NEVER stable, ever, on these drugs, is that a reasonable goal? After all this time, I think not.

 

I am so sorry for this long post.  I  DO KNOW that perhaps SA is not equipped for people like me.  That said, this is where I learned that "turning myself over to the medical authorities" would more than likely do more harm.   I have no desire to live another day.  I have NO IDEA how to proceed and it is clear that my psychiatrist doesn't either.  She is going for harm reduction more than anything else because my physical and mental health are so very fragile.  I know how serious my case is because she works with addicts and spends most of her time getting her patients off their drugs but she is seeing all the angles here and it is clear she doesn't see a path forward for me either. (after 8 months)  The only thing that changed in these 8 months is a did B12 shots (which was medically very necessary because I waited too long), I had a vaccine and a colonoscopy.  Other than that and one round of antibiotics, I changed nothing since I joined SA other than tapering small amounts when I could.

 

I feel like there is only one way out...and have for a very long time.

 

If anyone has read this, and has any thoughts at all, please share them.  I assure you that I have been as tough as any that I have met here.  Genetically, I should NEVER have been put on any of these drugs, but I was, and I am, and there seems to be no path...

 

Over the years, I have tried to be a positive presence here when I could be.  I hope that makes up, even a little bit, for the extent of my out-pouring of despair here.

 

My signature is up to date.  I take my valium in 2 doses about 6 hours apart (for sleeping purposes) and I take my trileptal and remeron at night.

 

I tried looking through the forums to find out what SA advises for people like me...but couldn't find anything...perhaps because every path is full of hazards.

 

Happy New Year.  Grace

[DataGuy]

Happy New Year, @savinggrace. I'm sorry to hear things have worsened. I know you are doing all you can and it feels very bleak, but you have explained things very clearly in your post and I think you also offered reasons for the deterioration. 

 

I think it starts with the antibiotic in 2021. You had quite a profound reaction and neurotoxicity from antibiotics, as with psychotropics, can be quite severe and long lasting. I think there is the impression that neurotoxicity is just a buzzword that people throw around, especially people who are critical of psychiatry, but it is very real and can have profound implications for health. It's very possible you are still recovering from this. You can see in this study that antibiotics demonstrate neurotoxicity across a wide range of classes, including the penicillins like amoxacillin. I'll quote from the paper: 

"Penicillins are known to cause a wide spectrum of neurotoxic manifestations including encephalopathy, behavioural changes, myoclonus, seizures as well as NCSE (Table 1). A history of CNS disease has been described as a risk factor for encephalopathy associated with beta-lactam use."

The effects of neurotoxicity can be severe and long-lasting, and they can even be fatal, something that I don't think many people appreciate. There are case reports of neurotoxicity-induced mortality in the medical literature. For example, see this paper. 

This paper on Clarithromycin-induced neurotoxicity suggests patients with "psychiatric comorbidities" are at greatest risk for these reactions, and I think we can guess why that is the case. "A total of 38 patients with clarithromycin-induced neurotoxicity have been reported. The average age of patients was 51.3 years (range: 19–87 years) with females comprising 52.6% of patients. Psychiatric illness was the most common comorbidity, while only two patients had renal failure. Clarithromycin had been prescribed for respiratory infections in most patients, and only two patients were receiving more than 1000 mg/day of antibiotic. The symptoms started 1 day to 10 days after starting clarithromycin (mean: 5 days). A total of 71% of patients were under treatment with concomitant medication, and eight patients were undergoing treatment with psychoactive drugs."

 

That is the first explanation. The second and more immediate one is likely the propofol-induced sedation for the colonoscopy. This can also have a fairly substantial and lasting effect on health and quality of life. Although research on the neurotoxic effects of anesthesia is still in the early phases, you can read in this review that the effects can be significant and in some cases, life-changing, especially with extremes of age and various risk factors. 

 

I think the good news is that propofol is a relatively short-acting anesthetic, so although it can cause lasting harm, the short half-life should help to cap the damage. Because your nervous system is in such a highly sensitive state, it's very possible you could still be feeling the effects of this, even though it has been months since the procedure. It's not that uncommon for post-operative adverse effects, like cognitive dysfunction, to last for months (have a reference for this if needed). 

 

So although things may seem bleak, I think the worsening of your condition is understandable given the sensitivity of your system and the exposures to treatment you've had. I remember your reaction post-colonoscopy was quite severe and lasting, and I suspect it is has continued to be a problem, even if you thought the effects had dissipated.

 

Does this sound like it may be a plausible explanation? If it is, I think it would be best to continue to hold your medications, and, if you can, refrain from any supplements, drugs or treatments. I know more waiting is not exactly an enticing prospect, but at this point it is probably the wisest course. When people suffering from withdrawal syndrome have adverse reactions to drugs like antibiotics or other psychotropics, they do typically recover back to their wd normal state, although recovery time is variable. 

 

Again, I know this doesn't sound great, but I hope it offers an explanation for why things might not be as grim as they seem. I know you are tired of waiting for stabilization, but I think if you look back, you'll see there will always be some reason why things didn't stabilize. Tapering into difficult withdrawal symptoms might be one of them. Adverse reactions to supplements and other drugs may be another. Tapering too quickly, stress from everyday life etc. But I should probably ask you: when was the last time you had a long break from tapering without any other treatments or supplements, and what was the result? 

 

I'm sorry the new year finds you suffering so much, Grace. I hope with a little bit of time, things can improve and become more tolerable. I'm happy you reached out for help. I'd meant to check in but always have a long list of things to do which I never seem to make much of a dent in. And obviously the Christmas season has been crazy 😵‍💫. Still trying to recover my routine after that whirlwind : )

 

Hope you feel better, and don't hesitate to reach out again or ask follow-up questions (or correct any misinterpretations I may have made). Happy holidays 🎁🎉,

 

DG

Edited January 2, 2023 by DataGuy

[savinggrace]

Agreed, Data Guy although until you wrote this I had completely dismissed the idea that the amoxicillin in late 2021 had up-ended me so badly.  I keep a journal of my diet, supplements, activities, symptoms, etc. every single day.  I am going to go back and see if there was a significant over-all change going forward from that time from which I never stabilized.  The POTS symptoms lasted a long time but dissipated so I thought I was over it.  I live in constant fear of absolutely needing an antibiotic again.  I have SIBO and a chronic sinus infection that I simply do not treat, ever, other than w/ dietary and natural measures.  (saline irrigation)  When I was writing out what I had done in the last year (B12 shots, vaccinations and colonoscopy) I kind of had an "aha" moment.  It was eye-opening.  These four things are more intervention than I have done in 15 years. The B12 shots were necessary as my levels were approaching zero and B12 is necessary for the nervous system.  That said, I am going to (try) and not take any for as long as I can again.   I started taking  B12 injections (low dose; self injection) closer together as I thought they were helping.  I now think they may have lowered my blood levels of my medications significantly as B12 is a potent de-toxifier. (which is why I got so deficient and haven't taken any other vitamins that my body is screaming for) As far as the colonoscopy goes, I thought I was past that but maybe not?  I didn't seem to get significantly worse after it (and I gained 5 pounds and ate a little better) but that has regressed again.  Also I can't help but wonder what the COVID vaccines have done to my nervous system.  I got them all.  So although on a daily basis I don't change things I have indeed made some significant changes over the past year and a half.  Most people sail through them.  I haven't tried to taper anything for 8 or 9 months now.  I am grateful my psych doc is sticking with me and not forcing anything down me. 

 

So...I cross my fingers and hope I don't fall and break a bone or worse or get an infection that must be treated.  I have no muscle mass despite eating a significant amount of protein.  I have malabsorption syndrome but my gut and nervous systems won't handle the enzymes and other treatments necessary to make my gut healthier.  I am struggling to keep my blood sugar stabilized.  Sometimes 3 (large) grapes will spike my blood sugar so I watch my carbs/sugar like a hawk.  I don't digest fat well, but I have to eat something....

 

I hear you, DG.  Keep going the distance.  Don't change anything.  Excruciating constant pain and sleep deprivation and now sleep apnea make me think I can't keep going like this...time will tell.

 

Thank you for sharing your time with me.  I truly appreciate it.  I really do.  I am scared but I have been for a very long time.  The colonoscopy and the vaccines were a choice I didn't have to make but I was under considerable pressure to do so by my GI, psych, and PCP.  I needed to show them that I would cooperate on something (as I typically refuse all interventions.  The B12 seemed absolutely necessary as well.  Otherwise, I have just stayed the course.  I just wonder what my "withdrawal normal" even looks like any more.

 

Thanks again.

Grace

 

 

[DataGuy]

On 1/1/2023 at 9:00 PM, savinggrace said:

 As far as the colonoscopy goes, I thought I was past that but maybe not?  I didn't seem to get significantly worse after it (and I gained 5 pounds and ate a little better) but that has regressed again.  Also I can't help but wonder what the COVID vaccines have done to my nervous system.  I got them all.  So although on a daily basis I don't change things I have indeed made some significant changes over the past year and a half.  Most people sail through them.  I haven't tried to taper anything for 8 or 9 months now.  I am grateful my psych doc is sticking with me and not forcing anything down me. 

 

 

 

Ok. I thought reading your posts after that procedure you seemed like you were doing much worse, not sleeping much, in pain etc. Really seemed like you were having a lot of difficulty. Have you found anything significant going over your notes? 

 

Another thing that struck me is that you said you have never updosed, but that you noticed you were on the same doses of valium and remeron as you were on when you were 115lbs, but were taking 1/3 the trileptal. Do you remember how long ago it was that you were 115lbs? I am just thinking an updose of the trileptal could possibly help, but we would need to establish when it was you were 115, how long it has been and when you last felt stable (or more stable). It's also possible it may not work or make things worse. It's very difficult to predict. The important thing if you tried it would be to start very slow and be patient. 

 

It's a good thing you are writing things down. Very useful to go back and see what was happening and what you were thinking. I wrote everything down for a few years and it was quite useful, although for the most part I never read 90% of what I wrote ever again. But what I did read was there when I needed it. 

 

I'm sorry you're having such a difficult time, Grace. Pretty awful what these drugs do to people. Maybe the worst aspect of it is that almost no one else understands that it is even possible. Hope you have some improvement soon @savinggrace.

 

 

[savinggrace]

Hi DG,

 

Thanks for reading my response and replying in kind.

 

I don't remember when I weighed 115# last but it was at least 6-7 years ago...maybe longer.  That was an abberation though.  I have averaged about 100#, (now 90) for 20 years.  I think my natural set point for my weight should be about 115, but I have no muscle mass.  I sometimes think I am obesely underweight with such low muscle weight.  The height/weight ratio is highly inadequate determining BMI.  My BMI currently stands at 16.5.

 

Is going back on my trileptal dose really worth it to gain a few pounds?  The trileptal is likely responsible for my struggle with B12 and vitamin D deficiency among many other things. The AED's are known for this. Trileptal never noticeably helped me.  I just became dependent on it.  I should have stopped it way back when.  Trileptal is actually, imo, a very dangerous drug as its interactions are pretty strong and frequent with many other drugs.  It uses the CYP450 3A4/5 enzyme which is needed for all 3 of my drugs so it is competing with itself and the valium and remeron for metabolism.  That is my thinking anyway.  The reason I tapered trileptal (from 300 mg) is that I could.  I hit a hard brick wall tapering the benzo and I was/am so anxious to get some of these chemicals out of my body.  Also trileptal is a strong anti-cholinergic and that is very dangerous, especially in the elderly.  (I am 68 now; I guess I qualify for that category)

 

The thing is I know I need to get off the benzo but I am so de-stabilized and suffering so much I see no path forward.  I have not cut for 8 months or so because my psych thinks I am too sensitized and need to stabilize.  I haven't seen any "windows" in years now.  Rock...hard place...

 

I have searched and searched for what SA advises when one needs to taper because of medical issues, and I have so many, but it seems that answer can only be "turning myself over to the system."  I am 100% certain that would end in tragedy; my life is tragic enough.  I only get out of bed for a few hours a day and suffer extreme untreated body pain, malnutrition, and now sleep apnea.

 

I appreciate your suggestion but I really don't think trileptal up-dosing, even a little bit, will do anything but take me backwards.  I see my 3 drugs as one drug, essentially, because when I cut one, it affects the other two.

 

You have given me plenty of time DG and I really appreciate your insight and suggestions.  Is there anyone else out there who really needed to get off but couldn't because they were not well enough over-all, and/or stable enough nervous system-wise, to withstand the grueling process of even the slowest taper?

 

Grace

[DataGuy]

Usually the idea with updosing is just to try and stabilize the nervous system. One step backward, two steps forward. However, if you don't want to try it, that is very understandable. You are likely not missing much, honestly. We'd just be hoping for a small improvement. At least it is something to keep in your back pocket if you feel desperate enough. But, as I noted, it could also make things worse. 

 

There have certainly been other people who could not taper off because they were too sensitive. It is a tough position to be in. I have seen very long holds work to help stabilize things. 

 

Wishing you some relief in the new year 🙏

 

DG

[arbor]

Thank you for sharing @savinggrace.  Your struggle to reclaim your health inspires me.  I send wishes for your improvement and well being.

Arbor

[savinggrace]

Thank you Arbor.  Yes, I am trying to reclaim any remnant of health I am able, but I fear that ship has sailed.  I appreciate your kind thoughts.

 

Grace

[arbor]

Hi @savinggraceI think it's close to impossible to feel much optimism while in w/d.  I'll hold it for you in the meantime. assuming that's ok with you.  Every day I hold the thought of Savinggrace's health improving.

Arbor

[savinggrace]

Hey Arbor,

 

This is a lonely place I find myself in; my days seem to be a futile attempt merely to survive. 
 

Thank you so much for your support. 
 

Grace

[savinggrace]

On 1/13/2023 at 8:33 PM, DataGuy said:

Usually the idea with updosing is just to try and stabilize the nervous system. One step backward, two steps forward. However, if you don't want to try it, that is very understandable. You are likely not missing much, honestly. We'd just be hoping for a small improvement. At least it is something to keep in your back pocket if you feel desperate enough. But, as I noted, it could also make things worse. 

 

There have certainly been other people who could not taper off because they were too sensitive. It is a tough position to be in. I have seen very long holds work to help stabilize things. 

 

Wishing you some relief in the new year 🙏

 

DG

thank you once again, DG.  I consider your input seriously, and appreciate your ideas.  At this point, I think I would compromise too much by up-dosing the trileptal.  I haven't cut anything for a very long time, because as you so aptly pointed out, my nervous system is screaming for stabilization.  I am not holding out any false hope for relief.  As my health declines, I get more and more realistic about it.  At this point, I am just holding onto getting a few hours of real life in a day.

 

Wishing you well, always,

Grace

 

[savinggrace]

Gosh, I need help...

 

The worst has happened.  I can no longer get the brand name valium I have taken for 15 years.  (I have been way too sick with other things to have taper withdrawals; much of my sickness, ironically was probably caused by the valium)  I have paid an unbelievable amount of money to get brand-name all this time as I become completely unhinged with generics.  When I realized that I was having a setback every month for no apparent reason, I started going down the generic/brand name path.  Before anyone tells me they are exactly the same, only with different inactive ingredients, I know that.  I am extremely sensitive to even the smallest changes (.1mg brand name valium).

 

The obtainability and the price of brand-name valium has finally stopped me in my tracks.  The only place that will get it for me from the manufacturer (Waylis now) is charging $14.50 for a 10 mg. pill and I use 1 1/3/night.  I can't afford this any more.  What's worse...I have called 10 pharmacies and none of them will guarantee that they can get me a specific generic diazepam from one month to the other. (which is why I used to get so sick)  I have offered to pay an up-charge for this, but no one will agree to it.  I don't even know if I will adapt to a generic, or which generic would be the best one to try and hunt down.

 

I don't know if talk of manufacturers is allowed here, but I do know that certain manufacturers are considered garbage generics.  I would like to start out trying generic diazepam with the best reputation for efficacy.

 

I don't know if there are any answers out there but I am completely panicking.  I have been paying through the nose to try and stay stable,(with all my drugs) and I no longer can afford this.  (my sanity was worth it, but the price has gone up 3 times in a month....the brand name costs over 100 times the generic! It makes me sick(er) Obviously I would like to save the money, and have spent a good portion of our monthly budget for years, but I can't any more. 

 

i am willing to pay extra for a pharmacy that will shop around for the same manufacturer every refill but so far, I haven't.  If it is allowed, I would like to share the manufacturer here that seems to be the least objectionable to the little bit I can find out on the internet and see if there are any opinions. No pharmacist or pharmacy seems to care at all.  I guess I am an aberration.  It is a crime how much they are gouging people like me...because they can.

 

Thanks for any input.

 

 

[Shep]

@savinggrace Please note I moved your last post off the "Generic Meds" thread to here in your intro/update thread. That way we can discuss your specific situation.

 

When switching from brand name to generic, we recommend crossing over gradually. Do you have enough of the brand name to do a gradual change? That can lessen the blow of having to make this switch. 

 

 

[savinggrace]

6 hours ago, Shep said:

@savinggrace Please note I moved your last post off the "Generic Meds" thread to here in your intro/update thread. That way we can discuss your specific situation.

 

When switching from brand name to generic, we recommend crossing over gradually. Do you have enough of the brand name to do a gradual change? That can lessen the blow of having to make this switch. 

 

 

Shep,  I do have quite a bit left (accumulated over the years, rather in anticipation of this happening). How slowly should I do the crossover?  I have several months of 10 mg. tablets. so I could do it pretty slowly. I am very very unstable as it is; I have just recently restarted tapering trileptal (5%) cut and my doc wants me to cut again because of health reasons. She kept telling me to wait and stabilize but I never did. This crossover will likely be disabling. There was a huge difference when I changed from generic to brand so many years ago. Thanks for any thoughts. We called at least ten pharmacies (big and small) and not one would commit to trying to get the same manufacturer for me, even at an additional cost. Nobody believes how sick I am and was when I had to make this change 13-15 years ago?  I was on klonopin at the time. I went from 2 mg. Generic klonopin to 1.5 brand name  which was approximately 25% difference. When I crossed from klonopin to valium with brand names it wasn’t as difficult. 
 

Grace